Littlesisknits Blog

Not Much Happening

2012-01-29T14:35:00.000-08:00

My stomach has settled down for the past 4 days - knock on wood. I ate Chinese with no problems last night.

I finished this novel on my Kindle. It is another Amish story. It was very entertaining and had very little knitting content other than the knitting group they had weekly. This is a good book for the women.

Medical Updates

2012-01-24T07:06:00.000-08:00

Let's get the good parts first. I finished The Mercy, the last book in The Rose Trilogy by Beverly Lewis. I really enjoyed these books, and it is disappointing that there is not another. I give all three of these books 5 stars.

On to doctor's reports...

The ulcer on my heel is healing very nicely. The open area is down to about 1/2 inch. I am to keep up with the dry dressings since they are working so well.

Unfortunately, my x-ray shows no improvement since my last visit. The bone is just not healing. They assure me that we don't need to worry yet. They expected this to be a long road because of my medicines and diabetes. My weight bearing is still 60% on my right leg.

Nephrology says my last labs were great but she doesn't trust just one lab report due to the possibility of an error in the lab. She also restarted my Lasix due to my having so much swelling in my feet and legs. I have labs in 2 weeks to see where we are then.

I'm fighting to stay out of the darkness. Here is what is keeping me somewhat sane.

Lots of Reading

2012-01-21T11:06:00.000-08:00

I have been reading lots the past few days. I am really enjoying reading this trilogy.

I am looking forward to my orthopedic appointment on Monday, hoping that I can get rid of my walker. I flipped it over and it hit my foot this morning making a nice bruise.

No Bentley today. Casey and Jeremiah are both sick with sore throats.

Weather leg?

2012-01-18T11:26:00.000-08:00

I'm not sure if I have put too much weight on my leg today or if we are having some bad weather come in. My brother broke his tibia almost 19 years ago and he can tell when bad weather is coming in by his leg pain. Either way, I filled up my hot water bottle and have my leg propped up.

I saw my cardiologist this morning. Dr. Haddadin feels my pulse and blood pressures are high but not high enough for invasive treatments, so I will be continuing my current medications. He also said he would help with my disability claim in any way that he could.

I didn't manage to get over an hour total of sleep last night, so while I was up anyway I read The Thorn by Beverly Lewis. I had missed this series, and I am glad I can get 2 more when I want them. I got this book from ebookfling.com. Beverly Lewis fans won't be disappointed.

ebookfling.com

2012-01-17T15:41:00.000-08:00

I have been a huge fan of booklending.com, but when I added my Kindle books to ebookfling.com today I already have 10 credits. It is easier to navigate booklending.com, but easier to add books to ebookfling. ebookfling.com also loans Nook books. I will be going to ebookfling.com first from now on.

For Time and Eternity was a booklending.com loan. It is about the wagon trains going west, but this is a Mormon wagon train. At that time polygamy was still practiced by the Mormons, and it shows the viewpoint of the 1st wife. I liked this book.

We had a very nice visit with Bentley and Casey yesterday. After leaving our street, someone on Sunset Drive was driving in the middle of the street and would not move over causing Casey to break the mirror on her Santa Fe. It is so common for people to do that on Sunset. We all need to be more aware. I was guilty of not paying attention myself when I was still driving.

After Casey got home, she was making Quick Vegetable Soup, a family favorite. Bentley got into the potato bag and was having a little snack before she got to him. He moves so fast now that it is hard to keep up with him.

WooHoo!!

2012-01-15T15:50:00.000-08:00

We didn't get our mail out of the box until tonight. My long term disability has been approved again. This makes me feel so much better emotionally. It is terrible to be so sick and have someone on the other side of the country saying you are able to work.

I haven't read much lately but I did finish The Telling by Beverly Lewis. It is the 3rd of a series and I enjoyed reading all 3. My mom loaned me this book.

Thanks again to all who have helped us survive the 2 months that we were without my disability check, and to all the doctors who wrote letters. Without help we would not have made it through this.

Good News

2012-01-07T16:28:00.000-08:00

I had lab work done last week. I got results in the mail today and my kidney function has improved by 20 points since my nephrologist took me off Lasix! I now qualify for some of the drugs we had wanted to try for my IA.

It is so good to have something positive to post for a change ;)

More of the Same

2012-01-07T07:08:00.000-08:00

I re-established with my previous immunologist yesterday since Dr. Krishnaswamy has taken a year leave of absence to care for his aging parents. He changed some of my medication doses, but nothing new. We went through all the drug suggestions and I explained why we did not use them - my poor kidney function.

It was a beautiful day to get out of the house. Sunny and warm all day. Ir is gloomy today but my sunshine is coming to visit. Bentley brightens the day no matter how dreary the weather may be.

Thanks to my parents and my son-in-law and daughter for the financial help. Also so much thanks to my mom who makes me breakfast every weekday morning and also comes up and helps with cleaning. My dad brings my breakfast and lunch to me everyday and drives me where I need to go. Without my parents help, Scott would have to miss more work than he already does.

ASU has a shared leave policy that allows other employees to donate some of their leave to other employees who have family members who are sick.We usually don't know who gave time, but thanks to Angie who donated 100 hours and to Larry for his donation. It is so nice to be able to ask Scott to stay home or to come home when I am having a really bad day.

Scott does everything for me. He changes dressings, helps me bathe, cooks and cleans. Anything I need he does. If I have a bad night he is up with me, and then still goes to work the next day. He does all this even with the severe pain he has. It is true love.

Casey and Jeremiah got me Wishes and Stitches for my birthday. I loved it. There is a lot of talk about knitting, but it is also a great story. I think even a non-knitter would enjoy it.

Cold and Snowy

2012-01-04T16:19:00.000-08:00

Things are looking like January here. There is snow covering the ground and it has been very cold. I really hate winter.

I listened to The Confession by John Grisham on Audible. Excellent book! 5 stars from me. It is about an innocent man on death row just 4 days from his execution. Scott heard a few minutes of the book as he was making dinner and had me download it to his iPod. Scott is not an audio book fan, and he rarely reads fiction. It must be good if he wants to listen LOL

As I listened I knit some. I made covers for my Kindle and Mama's Nook. They are just simple little bags. My secret Christmas knitting was hot water bottle covers for our dads. The hot water will warm their feet but won't burn them like a heating pad.. They are both diabetic and getting a burn is dangerous for them both.

Lots of Reading

2011-12-31T20:11:00.000-08:00

Casey gave me A Life in Stitches for my birthday. I enjoyed the stories of Rachel Herron's knitted items and the stories of what was happening in her life as she knit them. I don't think someone who does not knit passionately would enjoy it.

An Amish Christmas was free for a few days as an ebook. My mom gave me a real Kindle for my birthday, and I am loving it. It is so much easier to read than reading on my iPod. This was a great book, but the price has gone back up now.

I was looking at my mom's Nook today and saw this book on it. I downloaded it on my Kindle from Amazon. It was a free book. It is a very short book. I read it in just a few hours. It is a nice little story.

I did get some medicine that is helping my abdominal pain. It still hurts but not as badly.

2011 was a rough year for me and I am not sorry to see it end. I am hopeful that next year will be better.

Holidays

2011-12-28T15:53:00.000-08:00

We made it through the Christmas holidays without any major events. I have continued to have tummy issues and they really came to a head on the 26th. I could not sleep because my abdominal pain was so bad. I have been having issues since September, but it has been off and on. I am going to see my previous family doctor tomorrow in hopes that she will be able to help me. I am so tired of everything I eat making me sick.

Thanks to friends Pam and Grant for a very nice Christmas gift. A medical bill arrived with it that it will cover.

I really enjoyed reading The Choice. The main character had everything you can imagine happen to her. It was a nice light read.

Mu friend Linda C. sent me Peggy Poe Stern's newest book. Buck from Stagg's Creek. It arrived in the mail yesterday and I finished it today. It is short stories; tall tales. I found it very entertaining.

Thankful Once Again

2011-12-22T16:34:00.000-08:00

Many thanks to my aunts Kathy and Jean, and former co-worker Colleen for sending money to help with my bills. Scott picked up a load at the pharmacy today and we decided to skip a couple that are no longer covered by my insurance. I am not paying $770 for a months supply of anything unless I am 100% going to die without it. This particular medicine keeps me from reacting to things I eat. I will just have to be super careful. Another medicine was $140 and we skipped it also because there are ways to make do without it.

Kristen has been celebrating Christmas today with gifts from our family. We had a pretty good day with the exception of a bout of tummy trouble after eating some pizza at lunch. I've had lots of company today which helps my mood.

I also want to specially thank Dr. Charles Ford for the beautiful letter he wrote to the company denying my long term disability claim. He wrote exactly how it is - how it feels physically and emotionally, and the time it takes to recover from anaphylaxis. I was speaking about that to my primary care physician on Tuesday - it seems they think you can go in the bathroom, pop an epipen and go right back to work. It takes days to recover physically and I have had so many I am not sure if I will ever recover mentally. Very few people understand the terror of seeing someone with a mop bucket in a public place, or seeing an automatic air freshener dispenser on a bathroom wall. It is terrible to be afraid to go in a public place because you don't know who may have on a perfume that may trigger an anaphylaxis. I really appreciate all Dr. Ford has done for me since I met him in 2004. Also thanks to Barry who takes care of making sure Dr. Ford does what he intends. He is so busy that he has to have reminders I am sure.

Little Bentley is drinking from a cup by himself. He loves water, and especially loves prunes. This child has been giving me the strength to continue to fight this horrid disease since before he was born. He would be fine without me, but I sure want to watch him grow and see what he will become.

Running Up and Down the Highway

2011-12-20T08:36:00.000-08:00

I am extremely tired. I had a doctor's appointment yesterday and another today. Since we are approximately 1 1/2 hours from Johnson City, this makes long days. Each doctor's visit takes more money, which sinks me deeper into the hole. With the addition of the last medication it pushed my medication costs to almost $500 per month ( and that is a good month with no extras). My long term disability review is in progress but is waiting for more records. I am still working to get all the paper work needed for my social security disability hearing.

I would love to be at work. All the people coming and going make life so much better. Boredom and loneliness overtake me some days, especially dark and dreary days like today. If I could get well there is so much I want to do.

Enough gloom...

The Concrete Blonde was very entertaining. It is about a police officer who shoots and kills a serial killer and then is sued in civil court by the family. I loved it. It was an audio book from audible.com

My Aunt Jan sent me Miracle and Other Christmas Stories for Kindle. Most of the stories were very good. It definitely brightened my mood. Thanks Jan.

Other than just a tiny bit of secret knitting nothing going on in the craft world. I have lost interest in most things other than reading and TV. I watched a few Christmas movies but real life just does not turn out the way it does in those movies.

I am looking forward to Kristen spending a few days with me. She will be a bright spot in my week. Casey and Bentley won't be back until Christmas. I miss the kids so much. I wish they all could be here all the time.

Thanks to Carol and Angie for supper last night. The taco soup was great!

Please pray for God to show me his will. I would love to return to work somewhere - where ever I am supposed to be, but I need to be well. If I am not getting well, I really need the long term disability check to be restarted. We would not be able to pay bills now if not for the generosity of family and friends. It is really hard for me emotionally to not be contributing to the family income. It isn't fair for me to be dragging everyone into this dark hole of debt with me. I really need some sign that everything is going to be ok. Please ask God just to give me some hope again that everything is going to work out.

Book Recap

2011-12-14T15:23:00.000-08:00

I am a bit behind with my book recommendations. Megan's Way was excellent - a real tear jerker about a mother fighting cancer. 5 star.

My Heart Remembers was also 5 star. It is about a family of orphans sent west after their parents died and the story of their lives.

Trial by Fury is about a Fundamentalist Mormon group and the things they do to protect their way of life. Also 5 star.

All of these books were available for the Kindle App on my iPod Touch. I have also been reading old cookbooks. I am fascinated by instructions on how to cook a sheep's head.

This has been a very depressing time for me. I am fighting to stay ahead of the darkness. I am now able to put a little weight on my leg and walk using my walker, but I now remember that I couldn't walk before I broke my leg due to shortness of breath and chest pain. I want so much to be well, and I am really struggling with what possible purpose I serve when I am as helpless as a small child. I know that there is a purpose but I am really in a low place emotionally.

Thanks to my brother and sister-in-law and to my parents for financial help. I really hate being so dependent physically and financially, but do appreciate all that is done for me so very much.

Bentley visited today and while he is around, no one can be sad.

A Slow Mend

2011-12-08T16:41:00.000-08:00

I can't say that I have recovered from my illness, but I am improving a little each day. I came home on Tuesday. I have been taking Phenergan and Zofran pretty much around the clock for nausea. Tomorrow is my last day of antibiotics so I am hopeful that the nausea will go away when I finish those.

I told Scott today that I am going to be completely well by Spring. My leg will be healed and I refuse to be sick anymore. I decided that surgery reset my heart and my IA. A while later when I checked my blood pressure my pulse was high again - the first time since my surgery. I get it. My illness is not up to me. Please God - I don't need an anaphylaxis to be shown further that I have no control.

Special thanks to my Uncle Dennis and cousin Amy for an early Christmas gift to help with my bills. Also, as always, thanks to my parents, husband and daughter for their unending care and support.

Finally A Diagnosis

2011-12-04T09:05:00.000-08:00

They finally got enough lab reports back to give me a diagnosis of a bacterial infection of the colon. The cultures aren't back to tell exactly what it is but Flagyl works for most so I will be starting on it.

I am back to nothing by mouth since any fluid at all gives me diarrhea. Hopefully after a few doses of Flagyl I will be able to keep fluids in and can go home.

Back in the Hospital

2011-12-02T12:25:00.000-08:00

I was admitted yesterday for dehydration. I have been sick since Thanksgiving but got much worse on Wednesday. I was not able to keep my medications down so I was admitted yesterday.

Doubts

2011-11-26T12:12:00.000-08:00

I have been able to hold on to my faith for a long time through this ordeal, but I am having a day of wondering why. Am I being punished for sins from the past? Have I displeased God so much that I must suffer?

I am using an ointment that my sister-in-law made for me to try and heal my bone faster. She mixed comfrey in jojoba butter. I will try anything to get better faster. Mary Ann's mom used comfrey and healed a broken bone very quickly.

My mom got Lowcountry Summer from Audible.com for me. It is not my favorite Dorthea Benton Frank book but it was good. Her books make me long for Charleston. The main character is a little too snooty for my taste. I never really liked her.

I read a Kindle book also. Nora's Ribbon of Memories is another Stephanie Grace Whitson novel about Nebraska settlers. This one was not as good as the past 2 I have read but was still good. It started a little slow. You can also borrow this book from booklending.com to read on a Kindle or Kindle app on an iPhone or iPod touch. There is also a Kindle app available for PC. I like ebooks. They don't take up space in the house.

I got a letter from my long term disability insurance that my denial is being reviewed. I have had no good news from Social Security. Everyone at these organizations seem to think I am able to work when I can't even bathe myself, cook for myself, or even walk around the outside of my house. I can't drive so I have no way to get to a job if I was able to get ready to go. I am so frustrated. I know it is all part of the game to try and get you to give up, but I still am so angry. I don't know how we are supposed to survive without the funds from long term disability since it was taking that check to pay for my medications. I am planning on trying to taper off some of them and see what happens.

Thankful

2011-11-23T16:32:00.000-08:00

I'm thankful that I have a good leg to stand on, and 2 good arms. I am thankful for my parents who take such good care of me, and my wonderful husband who has gone way beyond in sickness and in health, for richer for poorer. I am so thankful for my beautiful daughters, grandson and son-in-law. It is so good to have a kind, honest man be married to my daughter.

I am thankful for my friends, my extended family including my brother and sister-in-law who also do so much, my nieces, great-nephews, aunts, uncles, cousins and the whole crew. I am very grateful for my father-in-law and mother-in-law who have been so very kind.

My friend Kay sent me this book several weeks ago. I read the first chapter and laid it aside. I picked it back up this week and it was a page turner. I am also thankful for Peggy Poe Stern who gives me so many hours of entertainment. Better Off Dead is a real thriller about a female assassin who is sent to Newland, NC on an assignment. I finished the book in less than 24 hours even with naps. I am anxiously awaiting the sequel.

My nephrology appointment wasn't very enlightening. I did have many blood and urine tests ordered. Dr. Kfoury says she cannot tell me much until my parathyroid scan and these lab results are back. My body was not cooperative today and I ended up with 11 needle sticks to get the required blood. I had been on a roll of getting everything with 1 stick but that seems to have ended.

Scott is hard at work injecting and rubbing the turkey for tomorrow. We have deep fried turkey every year and it is delicious. I am looking forward to a decadent meal.

Warning: disturbing pictures

2011-11-19T11:20:00.000-08:00

I wanted to warn those who might be bothered before posting pictures of my leg. I will start with my post-op splint. It is a benign photo.

This was put on in the operating room. I wore this from 11-1 - 11-16.

I got a boot similar to the one I wore with all my stress fractures in my feet but it is a souped up model when they took this cast off. Casey took these photos when we took the boot off to wash my leg on 11-18. This one shows some of the bruising and swelling along with the incision sites at my ankle and knee. About halfway up my leg you see a large lump. That is the area where the fracture occurred.

This photo shows the necrotic area on my heel.

As usual for me, we are fighting with insurance to approve the parathyroid scan, and we are still waiting to hear from the wound care clinic. I have sent in appeal letters to BCBS for the forst night of my hospital stay and for my long term disability insurance.

The incision at my ankle is draining still, and I had to apply some heavy tape to both incisions at my knee because the wounds were starting to pull open.

Lots of prayer still needed as we continue on this journey of God's will.

More Bad News

2011-11-16T17:47:00.000-08:00

I had 2 doctor's appointments today. There is very little optimism in this post.

My immunologist ordered some tests last week and we have found that I now have hyperparathyroidism. The parathyroid glands control calcium levels in the body. Mine is secreating too much hormone which is causing calcium to be pulled out of my bones. The problem may be caused by my renal failure or it might be a problem on it's own. I will be having a scan to get more information about what is going on.

My orthopedic appointment came next. The x-ray of my leg showed very little healing of my bone and my incisions are not completely healed. We also discovered a Stage IV decubitus ulcer (bed sore) on my heel. Stage IV is when the tissue has turned black. The skin has died. I am going to be going to the wound care clinic to have it treated. The problem with ulcers at this stage is that sometimes when they trim out the dead area it can go all the way to the bone. Please pray that this is not the case with me. My diabetes and the steroids make it hard for me to heal.

I got a removable splint on my leg so I can wash! This is a plus. :). I also was able to use a real toilet today at the orthopedic office instead of a potty. You can't imagine what a treat it is to be able to flush. LOL

Things could always be worse so I am thankful for what I have.

Great Ice Packs

2011-11-13T11:44:00.000-08:00

My Physical Therapy Assistant made me the coolest ice pack. She put corn syrup in a gallon size ziplock bag, then put that inside another gallon size ziplock for extra security. When you freeze it, it remains flexible so you can mold it to your body. Thanks Joellen. Joellen and Tom, my PT, have been so great to me. They are kind, patient and super nice in addition to having helped me so much.

My big problem is with my long term disability insurance. I have been cut off because their consultant does not agree with my doctor's that I am unable to work. They don't think my problems prevent me from working. It makes me feel like they think I am a lazy bum. I am asking for a review of my claim. Hopefully a new reviewer will see things differently. Please pray for this situation.

I have been spending my time trying to concentrate on anything but my problems. I am listening to books, reading, and watching TV. I am knitting a little but shaking so much that I can't really do much with that. Scott moved my desktop downstairs today so that when I get in my wheelchair I can go over and get online. It also gives me access to the printer, which is very useful when writing appeal letters to disability.

Overall, I am angry and hurt. I shouldn't let things get to me but they do. I have faith that God will take care of me but it is human to wonder how it will happen and to worry. Letting go has never been easy for me. I was always a control freak but have learned to let go of lots of things in the past year and a half.

Trials

2011-11-11T17:08:00.000-08:00

I received some really bad news today. I don't want to share it yet, but am asking you to pray for resolution to the problem and I am trusting God to care for myself and Scott. After the storm has passed I will share with you all the details.

While I was in the hospital my cousin Pam sent me a gift of a Kindle book, Karyn's Memory Box by Stephanie Grace Whitson. She is a new favorite author. This is a book about a pioneer woman who came to America from Germany and traveled to Nebraska by train to marry a man she had never met. It was inspiring and just plain good entertainment. There is nothing like a good book to keep your mind off your troubles. I appreciate your thinking of me so much Pam.

The other thing that works on me like a tonic is my little grandson. He visited yesterday, and is coming back tomorrow. I love watching him roll over and get so angry when his little body doesn't do what he wants. I can relate to that so well now as I struggle to build strength in my arms to keep weight off my leg, learn to transfer myself from chair to chair and learn to drive my wheelchair. I always say things can always be worse and I never have to look far to see someone in much worse shape than me.

Here is a Bentley picture to enjoy...

Amazingly Bentley looks like himself. He is a complete mixture of Jeremiah and Casey. Some days you will think he looks like one or the other, but he really looks like Bentley. I know all grandparents think that their grandchild is the bomb, but isn't my little Bentley special?

Thank You Blue Ridge ENT!

2011-11-10T18:18:00.000-08:00

I received a sizable check (at least to me) today in the mail from the employees at Blue Ridge Ear, Nose and Throat. They had a fundraiser Tupperware order for me.

I am so amazed that they still think of me, and that they think so highly of me. I cried when I got the check and the note.

Thanks to all for remembering me and loving me, and especially to Amy AKA Slick for heading up the order.

You guys still amaze me. I miss you so much!

A Long Hard Journey

2011-11-08T11:32:00.000-08:00

Lots has happened since I have blogged. Louann and I went to the beach. The weather was perfect. We ate good food, laughed and enjoyed the time by the ocean. I had one anaphylaxis but we dealt with it and were in control. All was well until the trip home.

We stopped to eat lunch and when I was getting back in the van, my foot slipped off the running board and hit the pavement. I was being careful and did not fall but felt my leg snap. Louann helped me get the rest of the way in the van and we went to an emergency room. We were in Columbia, SC; still about 4 hours from home.

I got checked in and got some pain medications and x-rays to confirm that my right tibia was broken (shin bone). The doctor gave me enough pain medication to get me loaded back in the van (thanks to Louann and a very nice nurse). Louann got my leg stabilized in the back seat and away she drove. We stopped on the way and got my pain medications filled and she got me home in record time, even though she was coming down with a severe respiratory infection and was losing her voice and coughing.

When we got back to my house my family was here to help get me inside. It was a very scary and painful process but we did it. We got me bedded down on the couch and I stayed there until Monday when I got loaded in the truck to go to orthopedics. Scott was a trouper pulling bed pan duty and doing total care. Louann loaned us her wheelchair which saved us.

The loading and unloading at orthopedics was also a trial. My leg was splinted but I could feel the bones move. The doctor decided to admit me and do surgery on Tuesday, November 1, since I was in pain, my stress level was so high and could cause me to go in to anaphylaxis, and since it was over a 1 hour drive home. BCBS has determined that they will not pay since it was not medically necessary. I wish they could have lived in my body during the loading and unloading to see if it was necessary, or in the body of my husband and father trying to move my morbidly obese body. Since I have broken a major bone, my diagnosis has been downgraded from osteopenia to true osteoporosis.

On Tuesday I had surgery to place a rod inside my tibia to stabilize and strengthen the bone. All went very well. I came home on Friday. I am not allowed to put any weight on my right leg, so I am wheelchair bound for 6-8 weeks. I am having physical therapy at home, doing exercises, and am basically at the mercy of those around me. Thankfully I am well cared for even if I am unworthy of the love I receive.

I am truly amazed once again at the kindness and generosity of those around me. The care my husband and family gives me is the most amazing gift. In all my years of nursing I have rarely witnessed love like I have. My best friend has grieved thinking she could have prevented my accident while I grieve wishing I could have prevented her illness. My neighbors have provided food. Nurses and internal medicine residents gave me so much encouragement and support. Engineering helped think up ways to make my life easier. Physical therapy is teaching me independence and helping me overcome my fear. I was given a gift of a wheelchair. My husband has worked day and night building ramps and platforms to make our house more accessible by wheelchair. I could go on and on...

I may be confined to a chair and in pain, but I am one of the luckiest people I know. I always have said my illness is for a purpose, and good will come from it, but I didn't know that part of this accident would be to show me how much I am loved and that there are good and kind people in this world. We were never promised a pain free, easy life. Our journeys are going to have bumps because this is not heaven. Some bumps are hard to handle, but I will overcome this. It could have been much worse, and I am still able to use my arms and left leg.

Physical therapy thinks boredom may become an issue for me. I have my knitting and spinning when I am able, and I have books. I have finished 2 since I have been home from the hospital. Sarah's Patchwork really hit home for me. It has issues of dealing with physical disabilities and how those issues can be blessings in disguise. It is also a western pioneer woman book - one of my favorite genres at the moment. There is a touch of romance but it is mainly inspirational. I read this on my Kindle app on my iPod touch.

The second book I finished was The Choice by Nicholas Sparks. I am usually a huge fan of his but was disappointed with this book. I count on a certain type of ending in his books and this one was a surprise. I only rate this a 3 star. I listened to this one from Audible. I imagine most Nicholas Sparks fans would enjoy this one.

I finished a pair of socks before we left for the beach and have not completed any other knitting projects. It is hard to knit while taking pain medications. I tend to nod off easily too.

I do ask for prayers for strength and for pain relief. As always, I ask for God's will in my life. God will heal me in his time and in his way. He is still working on me, and we all know I need lots of work.

My Grandmother's Knitting

2011-10-22T04:36:00.000-07:00

As far as I know, neither of my Grandmothers knitted. I am referencing a book. This was book 25 of the year. It is a book of short stories about famous knitwear designers and thier families. There are a few patterns at the end of the book but it is mostly for reading. I enjoyed the stories.

I am up early waiting to head out on our adventure. Louann is leaving her house at 9 AM. She lives about an hour away. "My bags are packed...I'm ready to go..." I'm not leaving on a jet plane, but "in a Chevy van, and that's all right with me." oh no! The silliness has already started.

I am a bit sleep deprived. Yesterday I had to take my emergency prednisone dose. I have been tapering my prednisone by 1 mg every 2 weeks. On Wednesday I dropped to 22 mg per day. I had been feeling itchy pretty often, and yesterday I got the burning rash all over my face and neck. I'm not sure ketotifen is going to be the miracle for me that it has been for so many others. I have been told that it takes 3 months for some people, and I give all drugs a 3 month trial. I ordered 2 more months worth yesterday at an out of pocket cost to me of $135. If it isn't working better by then I will stop.

Book 24 - Bad Blood

2011-10-19T15:22:00.000-07:00

Oh wow! What a page turner (or ear bud burner LOL) I listened to this as an audio book. I read John Sandford faithfully in the 90s, getting each new novel as soon as it was released. It had been quite some time since I had gotten into a book this much. I was texting Louann as I listened to the first chapter saying she had to listen to this one.

This is not a prissy girl novel. It is about a religious sect and some very bad things they practice, murder, rape, kidnapping...a crime novel. I picture Virgil Flowers as Sam Elliott, even if the book does describe him as a blond in his 30s. My imagination!

Bentley came to visit today wearing a sweater I made for him before he was born. He looked great in it and Casey found pants that match very well. He was very good today up until the last 30 minutes. I won't get to see him again until we get home from the beach. Below is another sweater I knitted for Bentley.

This is the pumpkin hat I made for him.

And one shot taken by Scott on the parkway Sunday. I love this one.

Sixteen Brides

2011-10-17T13:46:00.000-07:00

What a delightful book! It was another easy read, but full of history of the frontier West. This was another book from booklending.com.

Yesterday Scott took me for a short drive on the Blue Ridge Parkway. We spent so much time there before I got sick and we miss it so much. No hiking for me now. I barely put my legs out of the car at overlooks. The leaves were beautiful but the trip took it's toll on me. I have barely been out of my chair today.

Mama is cleaning my oven. All that you can say is you know someone loves you when they clean your oven. Daddy had been repairing my rail fence coming up the driveway. Fence building is another thing you don't do for just anyone. :) My husband cooks and cleans, my brother gardens, my sister-in-law cans produce for me, my daughter cleans and brings my grandson to visit, my step-daughter pushes me in a wheelchair, my best friend is driving me to the beach... all things above and beyond anything expected. If I learned anything from being sick it is that I am loved.

I got news that my kidney function has worsened and I am scheduled with nephrologist next month. I was terribly upset for several days but have come to realize this is just another path. I will deal with whatever I need to deal with and continue on as best I as I can. Each day is an adventure, never knowing what will happen or how I will feel. My job on earth today may have only been to listen. Hopefully it was enough for the one who needed to talk.

I revised my "bucket list" last winter to things I would actually be able to do. No more dreams of Europe, the Pacific Northwest or learning to bowl. Yesterday marked another thing off - to go back to the parkway. This weekend if we make it to the beach I can mark off see the ocean one more time. This is not a sad thing. I am prepared for the worst as I hope for the best. Once you walk in the darkness of the fear of leaving earth, and you overcome the fear, you are free to truly enjoy each day. Instead of a deep dark fear of "what if the epipen doesn't work?" I can now just enjoy each good day for what it is. You can appreciate the incredible flavor of a home grown tomato, savor the sound of your grandson who just learned to squeal, delight in the color of an autumn leaf; so many things just to sit and enjoy.

Unanswered Prayers?

2011-10-14T04:26:00.000-07:00

A minister commented to Scott yesterday that I wasn't well yet because not enough people were praying for me. I think most of the people praying for me are praying for the wrong thing. God has a purpose for my illness. Asking him to heal me before my purpose is fulfilled is futile. We may not see the purpose in this but there is one.

Pray for God's will in my life. Pray for me to have strength to endure what is necessary to fulfill God's purpose.

Remember that all healing is not always getting well in the physical body, but through death of the physical body.

Enough preaching.

I finished book 22. Hot Flash is a book I read on my Kindle App that I borrowed through booklending.com.
It was a funny romance; very light, easy reading.

Our little Bentley has learned to squeal and does so very loudly. He also enjoys practicing his new skill. LOL. He is happiest in the kitchen with his mom. He loves smelling spices. Could he be a future chef???

Side Effects

2011-10-12T11:45:00.000-07:00

Ketotifen has side effects. I am so tired and sleepy that I can barely move. This drug gives me a chance at getting off prednisone so I will endure any side effects I get. My stomach is staying settled as long as I am very careful with my diet.

I finished the 21st book of the year. Along Came A Spider by James Patterson is a great book with murders and kidnapping. I listened to the audiobook. It takes me forever because I keep going to sleep.

I love a good tearjerker movie. Please suggest some good ones available on Netflix.

Finished 1 Sock

2011-10-10T11:55:00.000-07:00

Louann and I had girls weekend while Scott went camping. Don't get excited - for us a wild time is sitting on the couch knitting. Friday afternoon we went to Duffy's Amish store and bought some baking supplies for my bread machine and a few treats.

Friday night we had Black Bean soup with Onion Soup Bread. We watched Food, Inc and knitted the night away. Casey and Bentley came over and spent the day on Saturday. We were so tired from playing with Bentley that we just ate the leftover soup and went back to TV. We started watching a TV series neither of us had seen before, Three Rivers. We enjoyed the show and watched 3 episodes.

We slept in Sunday morning and the knitted some more. Sunday night I finished up 1 of my socks.

I also popped a loaf if French Sandwich bread in the bread machine. It was excellent. On Friday I made Gingerbread which none of us liked. It did not have enough gingerbread flavor. It did make a nice French toast, but I won't be making it again.

I am now on my full dose of ketotifen and have not had stomach issues since Saturday. I am still being very careful with my diet. I am very tired and sleepy but I'm not sure if it is the drug or the weekend.

Ketotifen

2011-10-08T07:21:00.000-07:00

My ketotifen arrived in the mail yesterday afternoon. I took 1 mg at bedtime last night and have taken 1 mg this morning. Some people who are on it advised me to taper the dose up rather than immediately starting on 2 mg three times a day. Most say it takes about 3 weeks to see any real results. So far no changes other than having more of an appetite. I am continuing to have stomach issues so we have ruled out zaroxolyn as the cause. I am continuing with my food diary and have identified a couple of potential problems but I am not certain enough to say anything for certain yet.

Bread Machine Heaven

2011-10-06T11:33:00.000-07:00

My new bread machine is the bomb. It takes me a long time to get everything measured and in the machine but it is well worth it. I put in my liquids, rest, put in my dry ingredients, rest, put in my yeast, rest, then put the pan in the machine and get everything going. I have had so much fun looking for new recipes.

So far I have made Traditional White bread, French bread, Cinnamon Raisin bread, and Italian Herb bread. I found that a 1 pound loaf is more than enough - Scott isn't a big bread eater. Breads do tend to raise blood sugars so I am going to have to have a little self control HA! I am not making any bread today - I have half the Italian Herb loaf left. Casey is coming over Saturday so I can make a couple of loaves to share. Louann is also coming up to spend the weekend so we will have something delightful while she is here.

I am having to cut most of the available bread recipes down myself and it is leading to experimentation to get the dough right. We are at a high altitude and that also causes me to need a touch extra liquid. I ended up adding 1 ounce of extra water to the Italian Herb.

I continue to have stomach issues. My mom thought it might be due to the Zarolxolyn I started taking after my last cardiology visit. I have stopped it temporarily to see what happens, but with none since Saturday I am still having issues. It does make me feel bad - dizziness, fatigue, salt cravings, thirst - but these are much better than having elephant legs and toes that look like sausages. Most people don't realize how much swelling hurts. It hurts to walk - hurts for anything to touch it. Misery. Unless the nausea, vomiting, diarrhea issues totally resolve by Saturday I am going back on my Zaroxolyn.

I have started a comprehensive food diary. The old allergy nurse is coming back out and I am determined to find the cause of my GI distress. I did fine yesterday until eating dinner last night - sirloin steak marinated with Montreal Steak Seasoning, olive oil, Worcestershire sauce and vinegar, baked potato with butter and Italian Herb Bread. I believe it was the vinegar or an herb that caused the problem. We will see. I also get nasal drainage and congestion when I get these GI symptoms so I think it may be a food allergy.

The problem that makes life hardest is the heart issues. Things that are so simple for someone else cause me to gasp for air and feel faint. Activity raises my heart rate, which causes my blood to move to fast to pick up adequate oxygen in the lungs, which makes me gasp for air and feel dizzy and faint. I also get severe muscle cramps which are caused by the prednisone deteriorating my muscles.

We are trying to lower my prednisone by 1 mg every 2 weeks. I started 23 mg per day yesterday and have already had to take an extra 10 mg today because of rashes and systemic itching. I had never been able to drop below 25 mg until last time when I tolerated 24 mg for 2 weeks. If the rashes and itching continue I will increase back up to 24 mg. Any decrease is better than none.

I am waiting for ketotifen to arrive from India. It is a first generation antihistamine with leukotriene inhibiting properties (like Singulair). Many people with IA have had great success with this drug that is unavailable in the US. It is very expensive for me because insurance pays nothing on drugs not approved by the FDA. It will be well worth the cost if I am able to significantly decrease my prednisone by taking it. Side effects will also be a problem - fatigue, weight gain, drowsiness. Not too bad in comparison with prednisone, but they do affect my life.

I have body image issues with the weight gain and Cushing's syndrome features caused by the prednisone now. I avoid looking in mirrors unless it is an absolute have to situation. Seeing pictures of myself makes me cry. I don't want for people to see how awful I look. No one recognizes me unless they know whoever I am with - most people see one of my parents and then realize it is me. This disease has taken away almost everything. My memory is now terrible, I am unable to work or even take care of myself or my home, I am unable to drive, and I'm not even able to do most of my hobbies. The ones I do have been drastically limited by my physical condition. And guess what else I get...bifocals! Even old age is catching up with me through my vision. I know that is not really a big deal but it is the straw that almost broke the camel's back. When Dr. Eberhart said that there were no changes in my eyes from the diabetes or prednisone it was wonderful until she said all that was wrong with them was being almost 47. Ugh! I may be half dead but I don't want to be old too! LOL

Truthfully - I am a grandmother so getting old is less painful because of my little Bentley. That little boy brings such joy to my life. I love his sweet little voice as he learns new sounds and squeals. I love his smile and his mean looks. Everyday I pray that the current thinking is correct and there is nothing hereditary about IA. If my child or grandchild gets this awful disease too it would be too much to bear. I will gladly carry this burden alone.

Secret Revealed

2011-10-02T05:42:00.000-07:00

This has been my secret knitting for the past 3 months. This sweater was my anniversary gift for Scott. We celebrated 11 years on the 28th. It is the Cobblestone Sweater pattern by Jared Flood knit in Cascade Ecological Wool. I am so proud of the fit. This picture is prewashing and blocking. I am having difficulty getting the sweater back to wash it LOL

My gift from Scott was a bread machine. Since I am trying to go chemical free in my diet to see if it will help my IA, we were going to have to make our own breads. I have made a traditional white and country french so far and we are loving it.

Book 21 was I Wish I Would've. It is a very dark and twisty book about so called "Christians". The author distinguishes "church-goers" from "Christians". This book has very graphic rape scenes and is not for everyone. It was a fantastic story, but if easily offended by sexual content it is not for you. It is available in paperback and for Kindle. I got it from booklending.com as a loan.

Little Bentley is thriving. He is rolling over and playing with toys. He found his feet while he was here and we were playing. It was so exciting to get to witness a "first".

As for my health...I am having a lot of tummy issues. I am having nausea, vomiting and diarrhea almost every time I eat. I have a new drug that is not approved in the US on the way from India. It is called ketotifen. It is a first generation antihistamine with leukotriene inhibiting properties. Many on the IA support group have had wonderful results with this drug. I hope it will help my stomach issues as well as it has many others.

I am also possibly going to try going on methotrexate. This would be an experimental use of the drug and if successful could help others as well. I am waiting on results of my liver ultrasound to see if my liver is in good enough condition to try this. I was diagnosed with a fatty liver from a CT scan that I had before my gallbladder was removed in 2001. Hopefully my drug regime has not caused more damage.

My anaphylaxis episodes have slowed a bit since I was started on Neurontin for my diabetic neuropathy in my feet. Another person on the IA board had similar results after starting it so one of the ladies on the group has started doing some research on it as well.

I Am Moved

2011-09-21T10:33:00.000-07:00

I have had a terrible time expressing how I feel even when I pour my heart out and cry as I write. Today I want to include 2 posts from another blogger in my post with her permission. She has come a long way in her 30 months fighting the unknown darkness. She doesn't use her epipen frequently like I do and isn't on 25+ medications, but she is following a diet from Hades.

I thank the others in my situation who share feelings, triumphs and failures. It makes me feel like I am not fighting the unseen enemy alone. Here are the entries from Evelyn's blog.

The Day I Met Death

The sensational news of the 33 miners stuck for 2 months plus in a hot, humid tunnel 2,050 feet underground in Chile captivated the attention of the world. And for the first 17 days they were cut off for from the world above them. No communication whatsoever. And nobody above ground knew whether these 33 men were alive or dead. The amazing part is that they survived for 17 days with death breathing down their necks. Their determination and sheer will to survive is astounding. This experience will stay with them forever. Their lives will be transformed. I hope that they will progress and not regress. To give up in life after overcoming death would be such a waste.

It has been 30 months now since I met Death. And these 30 months have been life-changing for me. It has been nothing but difficult and challenging, but the journey of self-discovery, of seeing things in a whole new perspective or learning to live again has been necessary. It has taught me how to make lemonade out of the lemons that life has thrown at me.

At the mere mention of the word 'death', many would cringe, touch wood, change the subject abruptly or even say, 'CHOY!' But it is 'death' that I am going to talk about today. By encountering 'death', I was rudely awakened from my slumber and learned to live all over again. And honestly looking back at the years I have lived, I was never alive. I was like the living dead. A person with a living body, but with a dead soul. Are you one of those living dead? Just barely scraping through each day of your life. Dragging your life through each day waiting for the next to end. Or living a life with no passion or purpose or joy.

March 2nd 2009 was just like any other day for me. Waking up, going about my normal routine: looking after my child, preparing meals and normal house chores. The first encounter happened during lunchtime. After chewing the peanuts from the chicken and peanut soup for the umpteenth time, a very strong foreboding feeling washed over me. I knew something was terribly wrong but didn't know what it was as this has never happened to me. I immediately went to my mother and told her that if I collapsed, my Epi-Pen was just in the cabinet. The foreboding feeling left and I didn't give it much thought after that.

Dinnertime came and I drank the same soup again! This time the reaction manifested physically. My lips swelled to the size that it would put Angelina Jolie to shame! And by the time I reached the hospital, my blood pressure had plunged, my throat and tongue had swelled to the point I had difficulty talking. I was given steroids and anti-histamine and was admitted for two days. Two days of continuos steroids and anti-histamines. I was discharged on Wednesday morning and was rushed to the ER again on Wednesday night. I kept reacting, to what I didn't know at that time. This time the ER doctor sent me home saying that 'I looked fine and was fine' even after we told them of what happened on Monday. I was very lucky that we did not meet this doctor in the wee hours of Saturday morning.

On Saturday at 1.30am, the worst allergy reaction struck. I was very stoned and groggy from all the medication, but a voice in my heart told me not to sleep. I think if I had slept, I would have died in my sleep. I felt my heart failing, my whole system shutting down and going into shock and I was blacking out. I woke my husband up and he jabbed me with the Epi-Pen and once again we rushed to the ER. This time I knew that I might not return at all. I was slipping into unconsciousness in the car and then I wasn't in my body anymore. I was moving into this dimly lit tunnel and Death was embracing me. I was in Death's arms and it was leading me to go deeper into the tunnel. The coldness that Death is can never be measured with all the eons of winters on this earth combined. As I moved into the tunnel with Death, I heard my husband’s voice calling me from a distance, calling my name, asking me to go back and that our son needs me. And in an instance, I was back in my body.

By the time we arrived at the ER, my veins had collapsed and they had to prick anywhere and everywhere to get a vein. I was lucky that the ER doctor that night had also experienced an anaphylactic attack and thus understood what allergy was and the seriousness of an allergy attack. When they finally found a vein and when the steroids coursed through my veins, I felt such relief. I could breathe. I could feel my heart returning to normal. And I knew that I was safe, for now.

I was admitted again, pumped up with medications and I was pricked by the daytime vampires, night time vampires and afternoon vampires constantly. Blood for this test, that test and every test that is imaginable. Up till today I still bear some scars of the needle marks. They remind me of how much I've been through and the things that I've learned throughout this journey.

The following months were hell. Someone had to be with me all the time. People who have had anaphylactic shocks were susceptible to having recurrent attacks. And when that happens, we could just collapse. And with no one around to administer the Epi-Pen, it would be fatal.

All the test results came back negative. That is good news AND bad news. The good news was that there was nothing wrong that they could find with me. Bad news was, what was it that happened to me then? What triggered the attacks? More trips to doctors, hospitals and tests and still NO answer. The only answer was in the years of experience of Dr.Yadav, Malaysia's only immunologist allergist. Even his tests came back negative. But because of his years of experience and the vast knowledge that he had, he believed strongly that I was salicylate sensitive. Salicylate is a component in aspirin. Salicylate is practically in everything. It is in food flavouring, sauces, food colouring, additives, spices, herbs, food preservatives, and even in fruits and vegetables. Salicylate is used in shampoos, soaps, paint, creams, toothpastes, detergents, mouthwash, lotions and etc. You get my drift, they are in EVERYTHING! How was I supposed to live a 'normal' life or even stay alive when everything had salicylate? My diet was reduced to fresh food: chicken, fish and a selected few fruits and vegetables. And the only thing that I could cook them with was salt, sugar and sunflower oil. No outside and processed food AT ALL! For months I was just eating the same food, day-in and day-out. Even the smell of belacan, durian, petai, detergents, shampoos, soaps or even hair-creams would trigger an allergy reaction. Because of the fear of anaphylactic shock, I had to go for a colonoscopy anesthetic-free. The doctors said I was too high-a-risk. When I'm in pain, I have no painkillers, NSAIDS, or even Panadol. Doctors tell me the same lines all the time, 'You're a doctor's worst nightmare because you're allergic to EVERYTHING!’ ‘Try not to fall sick.’ ‘I don't know what medicine to give to you.' And if I had to try a new medicine, as there are no more options, I would have to be admitted and be placed on high-alert, in case I react to the medication.

I became very depressed. I was very frustrated, angry and became a recluse. I am very, very blessed to have a strong and loving family. Without them I would not have survived those difficult days. There were days so bad that the neighbor's detergent could trigger a reaction so bad that all I could do was curl on the bed and just pray for all of it to end. Smells that triggered migraines from the depths of Hades and severe burning sensation on my tongue as though it was sprayed with acid and then dipped in salt, experimentation with new foods that caused loose bowels until I thought even my entrails would be expunged permanently, attacks so bad that my husband and I actually went to the hospital to wait just in case I dropped dead.

I was fed-up with everything. I was on anti-histamines everyday. And when the attacks came, I would have to double or triple the dose. And I was so stoned from all these anti-histamines. I couldn't even function as a person, as a wife, as a mother or a daughter. I decided to take charge of my life. I didn't cheat death to end up with a life like this. Of course it was difficult at first. I had to experiment with new foods bit by bit. If I reacted to the new food, I had to go back to the 'salicylate-free' diet and when I am out of it, I'll try again. I had to learn to cook, to make food in new ways. I had to learn to make my own chemical-free bread, cookies, biscuits, cakes, and basically everything that I put in my mouth. I had to flee many times in shopping malls when someone's perfume suffocated my air space. I had to forgo many outings and gatherings. And whenever I go out, I have to cook my own food and bring it out. I had to keep my house 'chemical free'. I hate it when people give me looks of sympathy, or said, 'WAH, everything also cannot eat, so poor thing! What kind of life is that?'

It was during these 30 months that I've learned to be resilient, to know which battles are worth fighting for, which ones to let go. I've learned the important things in life are in our hearts not in things. I've learned to live a life free of fear. What is to fear? I have met Death. I've learned the meaning of love. I've learned joy. I've learned to never give up. I've learned to appreciate. I have rediscovered my passion in life again. My vision of life and what life is can never be the same.

It took me 30 months to reach where I am today. Of course some days are 'Moderato', some 'Adagio', some 'Allegro'. I have days where I throw hissy fits. I have days where my mood is of a woman with PMS and menopause combined. There are days where I keep walking into a brick wall. There are days where I feel like I’m clawing my way up a steep, icy mountain with my bare hands. But I take a day at a time. One hurdle at a time. In this period of 30 months, I have had relapses. I have had long periods of time where I did not react to anything. Today I can eat so many more types of food (and reaction-free) compared to 30 months ago. I can even eat foods with a small amount of salicylate. Of course I have yet to try eating 'outside food'. That is my next goal.

To the people who are reading this, don't wait till Death comes knocking at your door before you realise the life that you've been living has been a farce, a facade. Live your life with passion. Get your priorities right. Ask yourself, 'Why are you alive? What is it that you want out of your life? What do you plan to achieve in your life? Are you working towards your dreams? Are you happy and contented with who and what you are?' Live your life before it’s too late.

‘Life is something that everyone should try at least once.’ – Henry J. Tillman

‘There is no wealth but life.’ –John Ruskin

The Journey Thus Far

I wrote this while I was going through a very, very tough period during the month of August. I would like to share this with you here.

29 months. That’s roughly 870 days. A total of 20,880 hours. Which is equivalent to 1, 252, 800 minutes or 75, 168, 000 seconds. Time which is enough to have 3 babies and yet have an extra 2 months. In 29 months, a baby would have learned to eat, smile, turn-over, crawl, walk, run, talk, hum, sing and do a multitude of tasks. For me, 29 months has been a journey of waking up everyday wondering whether it would be my last, whether some chemical would trigger another episode from hell, whether my body would overload and go into overdrive or silence in my head, bowels and senses. 29 months of taking one day at a time. 29 months of pushing my body daily to overcome this condition. 29 months of roller coaster rides. 29 months of wondering why I was spared from death to face so many challenges everyday.

These 29 months can be likened to being enrolled in the school of hard knocks. It’s like standing, getting slammed by a bullet train, getting up again and standing up and trying to be strong again. And then the cycle repeats itself. It’s like the scene from Matrix where Neo fought with Agent Smith in the underground train station. One can never know when or the direction of the next blow or kick is coming from or what ‘form’ or ‘person’ Agent Smith will take. Or when the attacks are going to cease or escalate. It’s a continuous fight everyday. I just can’t wait for the day where I am strong enough that when the attacks come, all I have to do is to just raise my palm and the bullets will stop in mid-air and drop to the ground. And all the attacks of Agent Smith will be futile and I can overcome and destroy ‘my Agent Smith’.

In these 29 months, I have learned how to survive in a chemical world when it was chemicals that almost killed me. I have fought and lost a lot of battles. I have gone through a lot pain, frustrations, anger, denial, defeat and depression. I have asked myself countless times, ‘Am I a failure?’ ‘What kind of life am I living?’ ‘What’s the point of cheating death and living in pain?’ And then one day it struck me. Who said that people like me who struggle with life are failures? And then I thought of the people who fight for their lives daily like me but who are worse off than me. People with incurable diseases. The girl who is allergic to water. Or the boy who is allergic to air and who has to live in a bubble for the rest of his life. And the girl who goes into anaphylactic shock when exposed to cold or cool temperature. These are people who live victoriously even in their imperfect circumstances. These are the people who persevere to be a shining light in this world even though their lives are engulfed in darkness many times.

People in general tend to applaud for the people who overcome their hurdles triumphantly. We tend to not give credit to those who are still in the midst of fighting their battles. I beg to differ. I think people who are in the midst of fighting their battles, who persevere even when they are down trodden, who refuse to let the darkness blind them are to be applauded as winners. They are the champions my friends. Why? It’s because they refuse to back down from the fight. They refuse to wallow in self-pity. They go on day to day ‘living’ their lives. And by living, it’s not living by waking up, going through the motions of the daily routines and then going to bed and repeating the whole cycle the next day and the day after that. They live their lives everyday not knowing whether there will be a tomorrow. And they make an impact with their lives EVERYDAY. They shine like a beacon. They affect others to live their lives to the fullest. They encourage, motivate and help others to ‘LIVE’ when they themselves struggle with the simplest thing in life.

Michael J. Fox is one of the winners whom I applaud. He was such a talented and brilliant actor. And to be struck with Parkinson’s disease at such a young age and at the peak of his career must have been a terrible blow for him. But yet today, he thanks Parkinson’s for saving his life, as it was a turn-around-point for him. His life was spiraling down with his drinking addiction. And when he was diagnosed with Parkinson’s he drank even harder and fell into depression and it affected his marriage and his relationship with his eldest son. He said that it was during a lucid moment that he realized that his life was in his own hands and thus turned himself around. He said, ‘‘In fact, Parkinson’s has made me a better person. A better husband, father and overall human being. Life delivered me a catastrophe, but I found a richness of soul. I owe it to Parkinson’s, no doubt about that.”[1] And today he continuously contributes to the research of Parkinson’s and continues to encourage fellow patients even though his disease has progressed. And to me, this man is a winner.

Another person whom I applaud is Christopher Reeves. Yes, the original Superman who wore his undies on the outside. Paralyzed after a riding accident, the man who once ‘flew’ high up in the sky became a quadriplegic. The accident had separated his head from his spine. He fell into depression, contemplated with suicide, and went through operations to re-attach his spine to his head, and painful rehabilitation. Though he could not walk ever again, he was a winner because he spent his remaining years of his life helping and encouraging patients who were in the same situation as him. Though he never walked again, he regained back some motor function, and was able to sense hot and cold temperatures on his body. And that was impossible for someone in his situation. He also battled allergies and asthma since childhood. And he reacted severely to the many medications that he had to take after the accident. In Kessler, he tried a drug named Sygen, which was theorized to help reduce damage to the spinal cord. The drug caused him to go into anaphylactic shock and his heart stopped. He believed he had an out-of-body experience and remembered saying, "I'm sorry, but I have to go now", during the event. In his autobiography, he wrote, "and then I left my body. I was up on the ceiling...I looked down and saw my body stretched out on the bed, not moving, while everybody—there were 15 or 20 people, the doctors, the EMTs, the nurses—was working on me. The noise and commotion grew quieter as though someone were gradually turning down the volume." After receiving a large dose of epinephrine, he woke up and was able to stabilize later that night.[2] Though he died at the age of 52 and did not walk again, he was a winner because of the decision to live life at its fullest even in his despairing and depressing condition.

For me, though I’ve been hit, smacked, smashed, knocked down continuously in this month of August, I hope that I will rise above my challenges and setbacks and be a winner even in my losses.

We Are The Champions – Queen

I've paid my dues

Time after time

I've done my sentence

But committed no crime

And bad mistakes

I've made a few

I've had my share of sand kicked in my face

But I've come through

We are the champions, my friends

And we'll keep on fighting ‘till the end

We are the champions

We are the champions

No time for losers

'Cause we are the champions of the world

I've taken my bows

And my curtain calls

You brought me fame and fortune and everything that goes with it

I thank you all

But it's been no bed of roses

No pleasure cruise

I consider it a challenge before the whole human race

And I ain't gonna lose

We are the champions, my friends

And we'll keep on fighting till the end

We are the champions

We are the champions

No time for losers

'Cause we are the champions of the world

--------------------------------------------------------------------------------

1] http://www.dailymail.co.uk/tvshowbiz/article-1326832/Michael-J-Fox-Parkinsons-saved-life-better-man.html#ixzz1UpIwuSnZ

[2] http://en.wikipedia.org/wiki/Christopher_Reeve

Thank you Evelyn for allowing me to share your words and your world with my friends and family. I hope it helps them understand my world just a little more.

Book 20 of 2011

2011-09-14T05:00:00.000-07:00

I got this as a free audio book from Audible quite a while back. It was ok - not something I would normally chose for myself. It is about a teenage boy who chooses to die instead of his brother and becomes what we call here a death angel. This is another book I would not have been happy had I paid for it. It might appeal to a teenager.

Book 19

2011-09-13T15:50:00.000-07:00

I got this book as a free Kindle book download, but when I just looked it is now $11. I enjoyed reading the book. It was a super easy read and only took me about 5 hours to read. If I had paid $11 for it I would have been very unhappy. You can borrow it for free from booklending.com I would recommend it as a free read but not to pay for it.
As usual, if I say I am doing better I doom myself. I had a pretty strong anaphylaxic episode last night. Ahh - life goes on.

Stone Cold

2011-09-11T14:53:00.000-07:00

I just finished this thrilling espionage novel on audiobook. Wow - it kept me interested to the very last minute. A great book for the guys - and some of the women.

I have been feeling better and getting a little stronger. My anaphylactic episodes have been less frequent which in turn helps decrease the side effects from the drugs. I still have many bad days but more good days than in the past.

I am working hard on a secret knitting project that I will reveal next month. :)

Labor Day

2011-09-05T14:56:00.000-07:00

Poor Scott has spent his day cleaning. I feel so guilty that he has to do this, but am thankful that he is willing and able to push through his pain to get something done. A trip out to the garden box left me out of breath and suffering from chest pain, but it was so good to step out in to the rain.

I spent the rainy day reading the 17th book of the year. I borrowed it from www.booklending.com and read it on the Kindle app on my Ipod Touch. I love stories about the Amish, and this one was a very good book for me at this time in my life. The main character is recovering from serious injuries. It is good for me to read anything about someone who gets well.

This book is too romantic for most of the men, but I would recommend it to anyone who enjoys a little romance. It is not overly religious since the main character is "English". Booklending.com is a great way to read some new books without the price. This one is over $10 for the Kindle edition. Since we are on a tight budget I really enjoy being able to borrow.

Perhaps a little knitting tonight during TV time.

Embraced by the Light

2011-09-04T18:04:00.000-07:00

This was Book 16 for this year. I read this years ago.

During one of my dark times, I was questioning why I had to go through this illness. Why did Scott have to suffer the way he does. Why, why, why. Then after hours of making my husband listen to me cry and rant, I remembered this book and how Betty was shown in heaven that we choose our lives on earth and even our illnesses because they are bringing us spiritual growth. My copy of the book was long gone ~ leant to many people over the years and I don't even remember who the last one was, so I ordered myself a new copy.

It was even more enlightening than it was years ago. I have experienced so many more things since then and understand so much more. Many things were things that I already practiced - praying for God's will regarding sickness, not trying to scare people into accepting Christ, etc.

I would recommend everyone read this book, or reread it if you haven't for many years. It may not be favorable to some people's belief of trying to scare people to Christ through a fear of hell, but overall I think most people can see the light in it.

At the least, this book has made a tremendous change in my outlook. Knowing that I may have chosen this illness for some greater purpose makes it so much easier to bear. This disease may kill me, but if it does there has to be something being achieved from it.

My aunt told me today to keep my head high and keep fighting. That is what I am going to do!

Very Special People

2011-08-31T15:44:00.000-07:00

There have been some special people who have touched my heart this week. A very special lady brought a delicious dinner for Scott and I to enjoy, someone got unlimited text messages so I could talk to them as much as I want, and my parents who continue to do so very much for me.

I do hate to never have anything wonderful to report, but life continues as it is ~ more of the same.

I did finish Book 15 of 2011 - Home to Big Stone Gap. I plowed through this one after our visit on Saturday.

Hopefully I will be visiting Casey and Bentley tomorrow. It has been a week and a half since I have seen them. From pictures it appears that Bentley's hair is back in thick and black, which makes Casey very happy. She wanted for him to have hair like his dad.

Here is some of my knitting on my favorite model.

His little hat is still a touch too big but it was a fun knit with scrap yarn. The pattern is Kyle's Kap (CH-1) by Bev Galeskas

Guest Blogger

2011-08-28T08:50:00.000-07:00

Scott has written an account of yesterday's outting to Big Stone Gap, VA. This trip left me pretty much helpless. Scott had to help me out of the car and in to the house. Yes, sitting in a car all day can completely exhaust me and left me cramping in muscles I did not realize that I had. LOL

It turned out to be a beautiful day, and opportunities to go on these trips are very rare. I am glad we were able to go.

Here is Scott...

TRIP TO BIG STONE:

TODAY IS 8/27/2011:

I had been planning a trip to Big Stone Gap, VA for some time. Today it finally was able to happen.

Those who attended were my darling wife Cindy, my father Elmer Ray, and my step-mother Dorothy Roberts.

We were hesitant about our journey due to hurricane Irene which was just off the mainland coast as of this morning. However, I was determined to proceed. We were just worried about rain and high wind. I’m not some idiot who does not understand about a hurricane or tropical storm. I realize we are hundreds of miles inland lol!

Cindy had been up since 3am so she was not really up to a road trip, but being the wonderful woman she is, she was up and ready to go 2 hours before me. We had a laugh about that later when we arrived at dad’s house.

Even though this outing was less than 200 miles round trip, it still was a very big even to all of us. You must understand that Cindy was diagnosed with I.A. and my father has chronic COPD. They are both diabetic.

We began our journey from dad and Dottie’s house to Big Stone Gap, VA. I had become very intrigued about my family heritage for many years, as so many people do. When I had got to my great grandfather I hit a brick wall, and could get no more solid information. You would have to know the Roberts side of my family to really understand where I’m coming from.

The drive up was very pleasant and although it was race weekend we did not encounter any heavy traffic. When we got to the train trussle between Duffield, VA and Big Stone Gap, VA, we stopped to stretch our legs and take some photos. This was really cool since this piece of railroad history has carried everything from coal, lumber, and countless other items in and out of this section of our country for centuries. I also found myself wondering about the numerous people who had crossed that gap going and coming for whatever reason. Our trip took us 2 hours at most one way. That also included a late lunch. In the railroads day it took the most of a day and probably the biggest part of the evening to get from Big Stone to Unicoi. Not forgetting Cindy and I drove from our home in Mountain City, TN which is an additional 36 miles give or take. We truly have came a very long way technologically speaking ,but we still refuse to get along with each other in our own towns,cities,all across the country and the rest of the world. Hey, isn’t that what someone named Jesus tried to teach us about? Sorry I started rambling on there for a moment, I do that from time to time.

So after arriving in Big Stone, Dad took us by the house where my great grandfather had lived for some time. He also showed us a building at the end of his property which my great- grandfather donated for a church, which is now a union meeting hall. This is something else I am very proud of, being a union man myself. So yes, I’m going to ramble a bit more. I’m very proud my beloved great grandfather had no objection to letting the land and building, which he donated and also helped build as a church, once it outgrew its purpose, become something for the working man. Like it or not this country was stronger when organized labor was instated .You could do a honest days work and be paid what your skill or trade was worth no matter if you lived in New York City or Big Stone Gap VA. In my opinion, there will be a SPECIAL PLACE IN HELL for the ones who helped break up the unions of this country and thank God there are still some of us around.

After arriving at Powell Valley Cemetery, I took a very good suggestion from Cindy, and thankfully there was someone working in the office who told me the location of my great grandfather’s grave. With just a little searching, there it was. I saw it even though I had been there as a child. I felt a little more complete seeing it now. I hope to return to his graveside again with my two beautiful daughters and my wonderful grandson, but if not here is a record of it. I’m sorry it took me so long great-grandpaw, but we made it.

I write this for my beloved wife, Cindy, my father, Elmer Ray, his loving wife Dorothy and for my great-grandfather, Sam W Roberts.

I love you all and thanks for the trip. I will cherish it always

Scott Roberts

Scott also visited his Uncle Smiley Smith's grave. Smiley was married to Loretta, Elmer's sister.

I thank Dottie for being so kind to me. She made coffee for me to take on the trip and helped me so much.

I did find one something to laugh about as usual. Check out the butt on this tree! LOL

Sorry!

2011-08-05T16:07:00.000-07:00

I apologize to those who depend on the blog for updates. The denial put me in to a bit of a depression that has been hard to shake. My long term disability insurance has hired a company to help me with my Social Security Disability appeals. I have requested the hearing with the Administrative Law Judge but got a notice from Social Security that it can be up to 24 months before the hearing. My long term disability insurance ends in 14 months, so I need your prayers.

I did not have a fracture in my foot. It was neuritis caused by trauma to the nerve. I have 2 numb toes still. I also injured a toenail on Wednesday so I am on antibiotics to prevent an infection. I am still such a klutz.

I continue to have the same problems but have managed to go 2 weeks without going into anaphylaxis - knock on wood! I still get terribly weak and tired with activity and my heart races. I keep getting fatter and fatter. I cannot stand to look in the mirror or see pictures of myself. I am inside this fat blob but you can't tell that it is me anymore.

Bentley is growing and doing very well. He is making cute little sounds and is very strong. He is starting to hold his head up. He has very expressive eyebrows like his mom.

I am able to knit very little. Cramping in my hands and just plain weakness and fatigue keep me from doing much of anything. I can sit in my recliner, but cannot sit without something to support my head for more than a few minutes. Standing and walking are pretty much the same. I never really appreciated health until I didn't have it anymore.

Denied!

2011-07-13T15:26:00.000-07:00

I got a denial letter from Social Security today on my disability appeal. They say that even though I cannot do any of my previous jobs that there are jobs I can do. Can you send me a list of those jobs please????? I am going to request a hearing with the administrative law judge.

This was expected, but it makes me very angry! So many people I know who are already getting disability are able to do much more than I am. I can't even take care of myself and my home! I can't hold my grandson for long without pain. I can't cook for myself, I can't drive, I can't walk through a store. What job do they think I can do??? Is there someone who pays people for sitting and watching TV??? I take so many medications that it is too complicated for me to even prefill my medication boxes for myself. I really want for someone to tell me what job there is that I can do. I will gladly take it. I'm sure that if there is a job that I can do there are 20 million people trying to get it.

Now on to something that makes me happy:

Bentley is growing and changing. He is such a joy. Just looking at him makes me smile.

I finished book 14 - Evergreen: A Christmas Tale by Richard Taylor. It is a free Kindle book. It is a short one but I liked it very much.

Mama brought me a peach pie today. I think I will eat the whole thing to drown my sorrows.

Book 13

2011-07-10T07:36:00.000-07:00

This book is a light, easy read. Pure entertainment.

While kicked back reading I have had my feet up on a big stack of pillows. With the elevation and the increased Lasix dose, I have found my feet again. They have wrinkled, baggy skin but they are close to a normal size. There is still excess fluid on the top but they have shrunk so much I can't stop looking at them. Scott says I have shrunk all over. Yeah!

My side pain is much better than it was. It hurts to get up and down, bend, cough or sneeze. I can now use my arm at least. Heat helps the most, so I am spending lots of time with my heating pad.

Don't Ever Say Things Can't Get Worse

2011-07-07T06:47:00.000-07:00

Monday night I had an episode of choking on reflux during the night. I woke up choking and coughed very hard for several minutes. In the process I managed to pull the muscles between my ribs and possibly crack a rib. It is so painful! It hurts to move.

The even sadder news is that there isn't really anything that will fix this except time. I can apply heat and ice and take anti=inflammatory drugs.

While seeing the doctor I did get my Lasix dose increased to try and get some of the swelling out of my feet. Running to the bathroom has been a thrill - NOT!

The end result is that I am even more helpless than I have been. It is so hard to get up and down that I am very dependent on someone to help. Kristen is here for a couple of days and she is an angel when it comes to helping me. She makes sure I have something to drink. \

The end of the pity party post.

Bentley Michael Harris

2011-07-02T13:59:00.000-07:00

Bentley arrived on June 23rd at 11:52AM. He weighed 7 lb 7 oz and was 20 inches long. As soon as I held him he became the love of my life.

Bentley is doing well. He is a breast fed baby and spends most of his time eating or sleeping. I got to spend one night with him before getting sick and having to come home.

I am getting a little stronger. It is easier to get up and down and I can go a little farther than I could. It is very slow progress, and I know it won't take much to knock me back to where I was. I am enjoying every moment that I am able to do more. I have a cast boot on my left foot right now from a little accident with a tool box. LOL I hope to get out of it before Labor Day.

Things are staying pretty much the same for us overall. There is rumor of a big cutback at ASU but we are hopeful that Scott's position will not be effected. Once again we are living on faith. Generous gifts have gotten us through the past year and we are trying to remember that and not worry.

Scott and I are spending the holiday weekend alone. It has been many years since it was just us for the 4th. Scott is cooking ribs that were a gift a good while back that we kept in the freezer. They are always excellent. We got a watermelon too. We are enjoying sitting on the porch listening to oldies on the radio.

Everyone have a safe holiday!

I Still Get Scared

2011-06-16T18:29:00.000-07:00

I have been going into anaphylaxis averaging once a week for almost a year solid, and I still sometimes get scared. I know as long as I have my medications I won't die, but when I can barely get air through my swollen throat it is still scary. Yesterday was my worst attack since last summer, and I must admit I was afraid I was going to pass out before I got my epipen injected. I also had to use a second dose which is unusual, and at that point I was scared enough to call for help. Luckily I was stable by the time Daddy arrived so I avoided the ER and another huge medical bill to make payments on.

I haven't been feeling well - doing very little other than watching television and a little knitting. I haven't been able to sleep very much - about 4 hours with sleep aids prescribed by Dr. Krish. My current TV shows of choice are The Waltons, Season 3, Ally McBeal, Season 2, Brothers and Sisters, Season 3, The Sopranos, Season 1, Chopped, and Iron Chef. Thank God for Netflix Instant and friends and family who loan me DVDs. Most nights I am up all night and go to bed when Scott leaves for work.

Still no word on my Social Security Disability appeal. I am so thankful that Dr. Ford carried Long Term Disability Insurance on me. If we didn't have that I am afraid we would be homeless by now.

Casey is dilated to 2 cm and is 80% effaced. Hopefully she will have a short labor once the real thing starts. Her due date is Sunday. We are all anxious to meet the little man. I am going to try and spend 2 weeks with them when they come home from the hospital just loving on him. I am going to share a room with the baby so I am afraid I won't be able to stop looking at him to sleep. I didn't know how strong a grandmother's love was until now.

Still Here

2011-06-01T15:26:00.000-07:00

There hasn't been much new going on in my life. My illness are continuing as before so there is no need to bore anyone with the details.

Casey is doing well. The baby is head down and ready to go. 18 more days by the calculated due date and 20 by the ultrasound due date. She was dilated a fingertip last week and goes in to be checked tomorrow.

Jesus Didn't Say Judge Your Neighbor

2011-05-22T10:12:00.000-07:00

Why are so many of us who call ourselves Christians not showing Christ's love to others? Do we really think if Jesus were on earth today he would show up at the local church on Sunday morning wearing a designer suit? That isn't what Jesus was about. He stayed with the undesirables - the poor, the sick, the sinful. He did not avoid people whose behavior did not please him - he embraced them and loved them. So many times we feel we can judge others, but that is not what we were instructed to do. We are to love without judgement. I pray God will help me do that. I will do my best to do more to help those in need and to love those rejected by most "Christians". I will do all I can now but pray for an opportunity to do more. God has a purpose for all, and he can use me even as I am.

Health update - Until Dr Haddadin returns from his trip to Jordan he does not want to try changing anything. He asked me to tough it out for 2 more months taking the medication I am on. My condition may not be able to be improved. I am still having high pulses, but they are not so high that they need to be treated urgently unless I am physically active. The medication keeps me at an acceptable rate at rest.

Scott and I have a friend who is in a horrid situation. He has Stage IV lymphoma and is undergoing chemotherapy. He, like myself, lost his job due to being unable to work. His wife's position was eliminated due to budget cuts, so they are paying COBRA Insurance and are living on almost no income. Please pray for God to provide for them and to comfort them. My last message from them was that they were praying for me. I feel so unworthy.

2011-05-20T13:37:00.001-07:00

How Am I?

2011-05-07T15:28:00.000-07:00

That seems to be a common question. For most of my life I believed that it was just a coined phrase and that no one really wanted to know. Everyone always answers "fine". If you don't really want to know, stop reading here - the next paragraph will answer how I am . I guess I am in one of those moods to let it all out.

5 weeks ago my glomerular filtration rate was 43. Last week it was 34. That puts me 4 points away from stage 4. I had more labs drawn Thursday that I don't have results on yet, and I am currently doing a 24 hour urine collection for creatinine and protein.

My heart rate is running high 90s - low 100s at rest. In the past Dr. Haddadin has said that is too fast. I don't know what he will decide to do - he may insist I try a new medication. I feel better overall on what I am taking, but will defer to him to decide what is best in 2 more weeks.

How do I feel? - I get sharp pains in my head that only last for a minute or so. I get severe muscle cramps all over my body but they are less frequent than when I was taking Multaq. At times I shake all over. When I stand up I sometimes get very unsteady, and sometimes everything goes black. Walking to the bathroom makes my heart race. My body is so tired but my brain won't shut off to let me sleep. At times I am very nauseated. My nose swells shut at times. I itch all over. I get rashes. My eyes water constantly. My feet look like balloons - so does my face, and I have a Buddha belly from the prednisone.

As for anaphylaxis, the last one was Wednesday night around midnight. I did ok after using my Epipen, extra Benadryl and prednisone.

My internal medicine doctor signed paperwork for me to get a handicap parking placard. Now if on the rare occasion that I decide I want to go in a store or restaurant I won't have to be hauled so far across parking lots in a wheelchair. It will make it much easier for who ever is driving me. Kristen is the best wheelchair motor so far. She is so patient. It is very rare that I leave the house anyway because I am so afraid of getting exposed to something and going into anaphylaxis in a public place. It is bad enough at home, but it really freaks people out when they don't understand what is happening.

Scott is having a really hard time with his back. He was unable to make it to work 2 days last week.

I miss being independent. I miss going to work. I miss my friends. I really hate that I can no longer go jump in the car and take off for where ever I want to go. As much as I hated housework, I would love to be able to just mop the floor or clean the bathroom.

So - what do I do to keep from going insane? Not much at the moment - watching TV mainly. Facebook. Ravelry. Dreaming of my grandson. Petting my dog. Watching birds and squirrels outside my house. Knitting a little bit. I try to sit outside a little bit each day but I get really congested. It is amazing that I can get congested with the amount of medications I take, but they seem to make no difference to my seasonal allergies.

Now please don't think that I don't know that I am very fortunate. There are so many people who are in much worse situations -- people who are so much sicker. I have a great family to take care of me and some people have no one. I am blessed.

Next week I am going to go to stay with Casey for a couple of days. It will be nice to get to spend time with her and JW. "We" are going to decorate the baby's room - that means Casey and JW are and I am going to watch. Casey has promised me a special dinner of stuffed peppers. Yum!

Tomorrow my little brother is cooking lunch for all of us. I am looking forward to having some of his ham. He is an excellent cook.

Happy Mother's Day to all.

Unwell

2011-05-04T10:41:00.000-07:00

It seems that there is no miracle with diltiazem. Enough to make my heart slow down makes my blood pressure too low. Low blood pressure feels awful - dizzy and weak. It feels like you are trying to walk through thick mud.

I finished Book 12 - an audiobook - The Collectors by David Baldacci.

It is a pretty good book. The characters are rare book collectors who get into some trouble with espionage.

Feeling Better

2011-04-30T18:18:00.000-07:00

The nausea is gone. Diarrhea is gone. Muscle cramping has decreased. YEAH!

But I had forgotten how easy it was to get my heart rate high enough to cause chest pain on diltiazem. So even though I feel good just sitting around, it is extremely difficult to do anything without getting short of breath and chest pain. It is great to feel good when I am sitting though. :)

A very sad post was on the IA support group board today. A 14 year old girl was diagnosed. She was asking how to deal with the fear of dying. I really don't know how to answer a question like that to a 14 year old. I know that everything feels so much more intense at that age. She is at the point I was about a year ago, and it was devastating to me. Dr. Ford helped me so much - he told me how I was going to feel when I was still in denial. This poor girl goes to a school in Illinois where they don't even have a nurse. She has to administer her own Epipen and call her mother. I don't know many teenagers who could administer their own Epipen. Keep this girl in your prayers - her name is Amber.

A Day with the Docs

2011-04-28T13:38:00.000-07:00

Good one first - Casey's checkup went great. The little guy was moving around like crazy and doing well.

For me - nothing good.

Immunology - I had read about another immunosuppressive drug that had been tried on 6 steroid depended IA patients, with 3 being able to come off steroids completely. It was a study done in 2003. Unfortunately Dr. Krish does not feel; 1) that I am stable enough to try anything experimental, 2) that it will work for me, 3)that the side effects are worth the benefit. He added Allegra to my meds and I am to stop trying to further reduce my steroid dose.

Cardiology - Due to the side effects, I am off Multaq. I am going back on diltiazem. You may wonder why I am going back on a medication that didn't work the first time. 1) My blood pressure did better on it. 2) I felt better overall on it than any other med we have tried for the tachycardia. We doubled my Lasix dose because of my continued swelling and also doubled my potassium dose. - What next? Pray that for some reason the diltiazem miraculously works this time. Other options - possibly trying other antiarrythmic drugs, but side effects may be a problem. Amiodarone is still an option if I am just not doing well enough on diltiazem.

Overall this means I can expect really no significant changes other than hopefully having less rashes with the addition of Allegra and less swelling with the increased diuretics. Dr. Haddadin says that I may have built a tolerance to loop diuretics because I have been on them for many years. If increasing doses of Lasix doesn't work then he is going to try Demadex.

We made it through the storms with no damage to our trees. It is amazing to drive through Doe Valley. Trees are down everywhere.

One Year

2011-04-23T06:50:00.000-07:00

Today is the one year anniversary of my first hospitalization for anaphylaxis. Things sure have gone down hill from there. I think I could deal with the anaphylaxis if I could just get to a point that I was able to do things for myself again. It is discouraging that a whole year has gone by and I am further from being well than I was then.

Book 11 of 2011 is St. Dale. It was a very entertaining book but if you know nothing about NASCAR I don't think it would be very interesting. It is set in the Southeast with visits to many local racetracks. This was a loan from my sister-in-law who is a huge fan of Sharyn McCrumb.

Bad Days

2011-04-21T12:16:00.000-07:00

Days of nausea and fatigue - when will this end!

I'm too sick to do anything but read, so I finished Book 10 - Served Cold. This was a page turner. I put it down only to go to the bathroom and eat. This was a gift from my friend Kay, who knows Peggy's books are my favorites. I only wish they lasted longer.

Nothing New

2011-04-19T14:38:00.000-07:00

Just a quick update to let you know nothing has changed. No better. No worse.

I finished book 9 - Chicken Soup for the Soul All in the Family. Some of the stories made me laugh out loud. Thanks Linda Clark for the gift!

The Enemy We Can't Fight

2011-04-09T09:39:00.000-07:00

My brother described my illness as the enemy we can't fight. That is the most accurate description I have heard.

Today is a day when my fingers are drawing into my hands in odd and freaky contortions. My whole body is cramping. I feel my heart beating in my face, and see the pulse of my heart as a shadow in my vision. This is a day when I am trapped. I can't do anything. My hands are shaking. Brushing my hair left me short of breath.

On days like today, all I have is my friends and family. Knowing that you care gives me what I need to get through days like this and hope for a better day tomorrow.

April Fool

2011-04-02T14:55:00.000-07:00

My body played another April Fool on me last night causing me to have to use Epinephrine again around midnight. I wish it were a joke, but it is true.

What does this mean? Is it the medication change? Am I allergic to Multaq? Who knows?

We did get some fantastic news today. Epipen now comes in generic! We saved $25! That is over half a tank of gas in the Toyota!

The End of a Long Stretch

2011-04-01T16:34:00.000-07:00

I had gone 23 days without having to use an Epipen! I had rashes and itching but was able to stop them with extra prednisone and Benadryl until today. This was the longest I had gone since I started having anaphylaxis last April. I am hopeful that this is a coincidence, but I am worried that it is from having to change one of my preventative medications to start the Multaq. I tried going off that medication in the past with poor results.

I saw orthopedics yesterday and got an injection of steroids into my hip joint, and it is feeling some better already. I have bursitis. I have had it several times before and getting the injections usually do the trick within a couple of days.

Casey had an ultrasound yesterday and the baby was sucking his thumb. All us going well with the pregnancy.

I want to thank all of those who sent cards and visited me last month. It is so nice to hear from people. Thanks also to those who contributed money - without help we would be in a serious situation. We appreciate all of the kindness so much.

High Hopes

2011-03-30T18:20:00.001-07:00

Today I start on an antiarrythmia drug, Multaq, for my heart. This is a slightly safer form of amiodarone that I talked about 2 weeks ago. This drug can be started at home. It may take about a week to work. If it works and I don't get bad side effects I should be feeling better next week.

The downside is that I am going to have to go off one of the medicines I take for anaphylaxis prevention.

Here is to hoping for the best!

Election Day

2011-03-26T10:37:00.000-07:00

It is election day in Mountain City. My uncle Willis Walker intended to run for mayor. He was a good and honest man, and he would have had my vote. I didn't always agree with him - actually it was maybe half - but I do know he was honest and he did what he thought was best. Today I voted for the candidates I knew he would want me to support. I voted for the candidate who is honest and fair.

Today is an achy day - it might be the weather - it might be the disease or the drugs - I don't really care what causes it or why anymore - it sucks. There are so many things I should be doing but just getting into the high school to vote wore me completely out. There is nothing I wouldn't do to be better.

Kristen asked me to read a book - Number the Stars by Lora Loway. I was blown away by how good this young reader book is. It is about two families during World War II in Copenhagen. It is really amazing. It was my 9th book for 2011.

The Rodney Dangerfield of Rare Diseases

2011-03-24T17:38:00.000-07:00

I just love this blog post written by Candace on the IA support group. It is so true! http://iainfoctr.com/blog/2011/02/27/the-rodney-dangerfield-of-rare-disea

Our disease does things to our bodies that we can't explain. The drugs we take to stay alive destroy our bodies. How many people who know me had ever heard of this disease before I was diagnosed. I worked in health care for over 20 years and I certainly hadn't heard of it, and many of my doctors have admitted that they had not either. Outside of the support group, very few people comprehend how miserable we may feel on a certain day, and that there is no rhyme or reason as to why it is worse one day than another. Misery loves company. I am so thankful for the support group.

Casey and Jeremiah were married on Sunday in a private ceremony. "Jdub" is a trooper. The second time I met him he was visiting me in a hospital room, bringing me carry out from Outback. He knows the way to Mama's heart. LOL We welcome him to the family with open arms. Casey wasn't the only one who fell for him fast. He is just like my own child.

For me medically, things are about the same. With the changes in my medicines I had some rough days until we got the doses adjusted. I am now back to my baseline normal. My feet are swollen but at least I don't have pitting edema up to my knees and my heart rate is back down to around 100 at rest. I have been feeling really bad - tired, aching, chest pain - normal for me but a little worse than average. Next week I go back to cardiology and to orthopedics. I am also having a DEXA scan to see if my osteopenia is getting worse. We expect that it is since I have been on prednisone for nearly a year and off hormones for that long. I really don't know that anything can be done if it is worse - we know I can't go off steroids.

Tomorrow will be a day out of the house for me. I have fasting labs, then we are going to see Casey, pick up Kristen, and then home for Scott to spend the weekend smoking pork barbecue. My mom is making red slaw to go with the pork. I sure hope my cardiologist doesn't read my blog - I am going to have a fat and cholesterol binge. I am also going to have some cake made by my sister-in-law. I don't know if she adds some secret ingredient, but her cakes are the best.

A Very Difficult Day

2011-03-16T15:26:00.000-07:00

There are things that I have not been sharing. Scary things.

I have been having episodes of "waking up" having no idea how or when I got somewhere or why I am doing what I am doing. Last Saturday I was in the kitchen counting silverware! ???? I also have times when I try to write but what ends up on paper looks like a 2 year old scribbling. I type texts but the are jumbled letters that make no sense. We were reassured today that I do not have Alzheimer's Disease even though I have been convinced that this is January. Dr. Krishnaswamy thinks these things are related to my migraine headaches and partially to my dear friend prednisone. I must write a poem someday in honor (or horror) of dear prednisone - the drug that keeps me alive but sometimes make me question if I still want to be.

I shake pretty much constantly now. The prednisone is weakening all my muscles. My father-in-law had already told me that since he has been taking it much longer than I, but I chose to ignore him. I have developed that special hearing that patients get - you only hear what you want to hear.

As for cardiology - I have had a long cry. My legs and feet are swollen so badly. Skin is peeling off them in sheets. My heart still races, I still get short of breath, and everything is just getting worse instead of better. Dr. Haddadin has decided to try a different drug in the calcium channel blocker class just to see if a different one might work a little bit better. If this drug doesn't work, things look grim. The last drug we are going to try is amiodarone. It has serious side effects and will be the last resort before invasive measures. I asked Dr. Haddadin if this drug wasn't worse than the ablation and pacemaker placement but he thinks it is not. Here is a link to the side effects. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000870/ He said if I were 86 he would not hesitate to use this drug but it is not a drug you give to someone who is 46.

So life goes on and God sends blessings. I came home to find the most beautiful card in the mail with a gift that I know was given from the heart. I won't disclose the names of the couple who sent it, but they are true angels. It seems every time I am ready to give up God sends someone like them to give me the will to fight. This particular family has been such a blessing in my life.

Tomorrow, if I am up to doing it, I will start on my Social Security Disability appeal. The Idiopathic Anaphylaxis support group has been a huge help with making me feel like I am not alone in this. Someone pointed out that they may not even know what IA is. I am going to send every article I can print about the disease along with all the medical documentation. I have to write a hardship letter asking to be allowed to see a doctor because of the possibility of getting exposed to a trigger if I have to go to a hearing. You can also request a private hearing if I understand correctly. Most everyone on the support group was approved on the 2nd or 3rd appeal.

I am trying to remember that tomorrow is St. Patrick's Day and that way I should know that it is March. If not, don't be surprised to get a Valentine from me next month. - You have to keep laughing. :)

Discouraged

2011-03-13T10:25:00.000-07:00

This has been a hard week for me emotionally. I got a denial letter from Social Security disability. I expected it but it made me feel hurt and angry.

I don't fit into a typical category. Everyone in the IA support group had told me exactly what to expect, and some of them got the exact same comment on their letters. My reactions are not frequent or severe enough to make me unable to work. Today I am able to chuckle about that just a little.

There is nothing to do now but get up and fight. Dr. Krishnaswamy has offered to help me in any way he can so we are going to have to get everything lined up in medical records. I have been advised to have friends and relatives write letters about how IA has affected my life and send them to SSA. (Social Security) I am going to start taking pictures of my reactions and my swollen feet. I am going to send examples of my illegible handwriting because I shake too much to write. I am going to send everything I can to show how life as I knew it was taken away.

I have to go to an orthopedic to get an injection in my hip to help with the pain. How I miss Dr. Mike Kimbro! I know he is doing good work in Peru but it was so nice having him here and being able just to take care of things like that.

As allergy season gets into full swing, I have been told to expect more problems. Tree season is my worst allergy season and it is starting up with a bang. When my immune system gets triggered by anything it makes me more likely to go into anaphylaxis.

I am enjoying the sun being out. I am looking forward to the warmer weather and being able to sit outside some. These walls get boring, but boring is safe. Going anywhere outside my home is scary. Someone can walk by me with perfume on and I have to use inhalers. I have become a prisoner of my house and automobiles. The porch will be a nice addition to my safe spots.

The thing I miss most this week is traveling. Scott and I usually made a trip to the coast in March each year. Last year Scott couldn't go so Louann and I went to the beach. That little fix of warm sunshine helped get me through until the nice weather arrived here. I cherish the good memories from those trips. and if I had known how my life would change, I would have went and did more. Take time to have fun while you can. You don't know what tomorrow will bring!

Father-in-law Update

2011-03-06T18:20:00.000-08:00

Elmer's hemoglobin is up 3 points after 3 units of blood. His creatinine level is coming down and they plan to let him go home tomorrow.

I had an episode of high blood sugar and pulse last night but am doing ok now.

Snow arrived today to turn us back into a winter wonderland. Yuck!

Blessed

2011-03-05T10:58:00.000-08:00

My father-in-law gave us quite a scare. He was taken to the hospital by ambulance on Thursday night with a blood sugar of 30. He was admitted and has had 3 units of blood so far, and is feeling better. We are so thankful that he is getting well.

I have recovered from the flu. After getting the PICC removed I have stopped having the strange reactions that were occurring with the flushes. The blood cultures were negative so we assume the reactions were autoimmune in some way triggered by the flush. Dr. Krishnaswamy says the PICC may have to go back in but we will keep it out as long as possible.

My pulses are running some lower on average. This is great. The bad part is that my blood pressure keeps bouncing from high to rock bottom. The changes in blood pressure make me dizzy and weak. It is hard to keep it at the tight level.

I am still averaging about 1 anaphylaxis per week. We have raised my prednisone dose back up some but I have stopped Plaquenil. We could see no change with it and it has too many bad side effects to take it unless it shows real benefits. I am seeing Immunology every 2 weeks now because I am considered unstable.

My cousin asked me to explain what all the medications I take do - I am still trying to figure out how to explain it. I worked in allergy for 6 years and went to many classes on the immune system. It is very complex and hard to understand. In order to explain what is wrong you really need to understand how the normal immune system works. Some of my medicines suppress antibodies. Some block histamines from attaching to cells. Some block leukotrienes from attaching to cells. Some stabilize mast cells. I also have medicine to slow my heart rate, lower the amount of acid produced by my stomach, cause my body to hold in calcium, remove fluid, and reduce inflammation. It might be easier to say what I don't take. There is very little information on Idiopathic Anaphylaxis, even in medical textbooks. Some of my doctors had never heard of it until I was diagnosed.

Scott continues to have severe back pain. He can no longer feel his feet. It has been a couple of years since he had an MRI to check the status of his tumor. For those who don't know, he has spinal lipomatosis. It is a fatty tumor growing inside his spinal column which compresses the nerves causing pain, numbness and weakness. As the tumor grows, the symptoms get worse.

I really don't like writing all these negative things, so on to some positive...

My little grandson is right on target with everything. The picture is his 21 1/2 week ultrasound. Casey and I have decided he looks like my dad. He kicks all the time, and if you poke his mommy's belly he will kick you. Casey got moved into a new place with more room for all the baby supplies. We are quite baby obsessed.

Kristen likes going to school at Tri-cities Christian, but is still leaning toward home school for next year. She is rapidly turning into a teenager.
Knitting is flying off the needles - mainly baby items. This is mostly because Louann and I are knitting together again. We aren't physically together but text or message each other while we are knitting. We miss spending time together so much. We haven't both been well enough to see each other since October. I haven't been able to spin because of hip pain, but am planning on getting my wheel back out and trying to learn to treadle with my left foot. It is strange that my feet seem to be like my hands - I am very right handed and right footed LOL

Overall, things are much better for us than for many other people. No matter how bad it gets we always see some other family in much worse shape. We continue to ask for God's will in our lives and the grace to accept whatever that may be.

Never Ending Drama

2011-02-21T14:16:00.000-08:00

I have been getting violently ill for the past couple of weeks every time my PICC line was flushed. Last night we went back to the original manufacture of the prefilled flush syringes, warmed the saline, and I even took a huge dose of Benadryl before the flush. It happened again ~

I emailed my Immunologist about it and he said the PICC line had to go - and I had to get blood cultures.

This is a mixed good and bad. I go back to getting multiple sticks every time I need a blood draw or an IV. It will be good if getting the PICC out makes me feel better. The adhesive from the dressing kept my skin irritated, and it will make bathing easier having it gone. It was also expensive to maintain the PICC, but I had been getting left over supplies from others who had been able to have their PICCs or central lines removed. I am going to hang on to the supplies for a few weeks to make sure I don't have to get another line put in.

My last cardiology visit was more of the same. I am to do some "At home" cardiac rehab since my insurance won't pay for me to go to a real one. There is nothing else they can do to try and slow my heart rate with medications, so if the rehab and trying to lose weight doesn't work I will be sent back to the Electrophysiologist (a heart doc who works with the electrical part of the heart). HMMM ~ you would think that having an electrician husband he could just fix it. :)

Blood culture preliminary reports will be back in about 24 hours, with finals in 3 days. I really hope there is nothing weird growing in there!

I seem to be in a book slump. I haven't been feeling well enough to get into anything for a couple of weeks.

Finally Feeling Better

2011-02-20T03:31:00.000-08:00

After finishing the Tamiflu I had a relapse. Yesterday I started feeling like my normal self again.

The sun was so pretty I wanted to get out of the house. We drove to Boone and had lunch. I was so worn out we just came back home and I went to bed. I really enjoyed getting out though. So far the rest of the family has avoided the flu.

This early Sunday morning my thoughts are with my friend, Linda Clark, whose husband and father are both critically ill. I cannot imagine being in her shoes today. Please remember them in your prayers.

Between the fatigue from yesterday and the stress of worrying about my friend, I woke up with an itchy rash but it thankfully doesn't seem to be progressing. This is just a part of life now. I am accepting the way things are a little more each day.

Fighting the Flu

2011-02-11T07:59:00.000-08:00

Wednesday night the flu hit hard and fast. Thanks to Tamiflu I am feeling some better, but still aching and generally not well. I wasn't even around anyone with the flu. I went to the hospital on Tuesday for an MRI, so I must have picked up the germ there. This is a tough reminder of how little immunity I have.

Here is my little grandson's profile. This is at 21 1/2 weeks. Everything looked good on the ultrasounds.

99 Years Without Parole

2011-02-07T16:42:00.000-08:00

I'm stuck in this malfunctioning prison of a body. My hope for remission is getting dim. I know it happens, but this continuing cycle is bringing me down. I have been very careful but it seems that a little stress and a sleepless night sent me back into anaphylaxis today.

This is a bad day. I do remember the post a few days ago that I am to refer back to but it just doesn't help much at this moment. I'm tired of being strong and positive. I'm just plain tired.

When I worked in long term care, I felt so bad for people trapped in bodies that didn't work. I was in my 20s, and I didn't have a clue how bad it could be. I am no where near what those people deal with on a daily basis, but I have a much better understanding now than I did then. Can you imagine being trapped in a body that will no longer move? Imagine being completely coherent but unable to communicate. Yes, there are plenty of people who are worse than me. I can write to you. I can talk. I can walk. I can feed myself.

My sincerest wish is for everyone to be ready in case something goes wrong. I have an advance care plan and a power of attorney for health care. We all should. Think about what you want if you can no longer control your own body. Be sure it is written down and legal. It will keep me from worrying that you are trapped in a prison without parole. Forms are available at any hospital.

My Driveway is Thawed!

2011-02-03T10:00:00.000-08:00

Book 8 for 2011 - Lucid Intervals by Stuart Woods. This book was ok - not the greatest. I was a big Stuart Woods fan in the early 90s. I'm not sure if my tastes have changed or if the book was just not as good as some of his earlier ones. As with all his books, it is a little trashy, but not to the extreme.

The warmer days finally thawed out the driveway. More snow is possibly on the way so it may not last long. It is nice to see something besides white outside. My grass is actually green.

I had a rough day yesterday with lots of stomach issues. I couldn't take my medicine until late because I had to have fasting labs and I really think that was the problem. I have been having lots of shaking but my blood sugars haven't been low. More mysteries.

God Does Answer Prayers

2011-01-31T09:14:00.000-08:00

Scott's paycheck went in the bank and wasn't enough to cover the bills. At 4:30 this morning I was praying for God to send enough money some way to get us through to the next paycheck. At 10:30 I checked my email and found that the check for one of my retirement funds that I was cashing out is in the mail! Once again, consider the lilies. Thank you Lord.

Casey is 20 weeks - half way to baby. She looks so healthy and happy. As you can see, we still have plenty of snow at my house. The driveway is covered with about a 1 inch sheet of ice. It is more slippery than ever. We are hoping we will get some rain to speed up the melting.

I had such a great time with the girls this weekend. They really are the most fun a person can have. Kristen may possibly leave the Christian school and start homeschooling. I really enjoyed learning with Casey when she was homeschooling. I did not enjoy having to be the bad guy who made sure she did her work.

Anaphylaxis has been under pretty good control for the past few days, but the racing heart and hip pain continue. I finally broke down and called my internist this morning to see what can be done with the hip. It is getting very hard to walk. It is extremely painful. I am waiting on the nurse to call back - Dr. Patel wants an MRI but the insurance may not allow it. It seems that prednisone is especially hard on the ball part of the hip joint, and since I have been on Prednisone for 9 months it could have done a lot of damage to that bone. I was already compromised before all the steroids due to osteopenia.

As I already said earlier, God answers prayers. It isn't time for me to be well or God would have already healed me. I get discouraged, and I know all of you who pray for me sometimes get discouraged too. We all have to remember that I am where God wants for me to be and he will not give me more than I can bear. On days when I am having a pity party, please refer me back to this post. :)

Waiting

2011-01-25T15:23:00.000-08:00

I know there is a divine purpose for my life, but today is one of those days when I just want to get on with it. Some days are a struggle, and this is a big one. It is one thing to know there is a reason, but it is very hard to keep faith daily that living this way is bringing good to someone. I don't see any way that I am blessing anyone like this.

I am continuing to have severe hip pain. I keep putting off calling my doctor because he has already told me he wants an MRI. That may seem a simple request, but to me it means the total exhaustion of preparing for and making a trip to the hospital for the test, not mentioning the expense. I plan on toughing it out for a few more days if I can by alternating heat and cold and increasing my arthritis meds.

My heart is also back to beating inappropriately. Today is a pity party day.

I did finish a receiving blanket for the grandson. I haven't been doing much because I am back on a sleeping jag. At least if I can go to sleep my hip doesn't hurt.

I finished book 7 of 2011 - Big Cherry Holler. It is a nice light read - what my friend Kay calls fluff. It is set in Big Stone Gap, VA. I read this one as a actually paper and ink book; a loan from my mom.

I have really enjoyed talking to friends the past couple of days - thanks Louann and Jane for making my days brighter.

Thanks also to all of those who continue to send cards to brighten my days. Knowing someone cares is a comfort.

Short Lived Improvement

2011-01-24T14:53:00.000-08:00

The lower pulses didn't last for long. I got so tired yesterday getting ready to go to my parent's house. It takes very little for me to be totally exhausted. Since then my pulse has been racing again.

My driveway is still thick with ice and more snow is on the way. This year is the longest stretch of a completely iced driveway I have had in the 16 years I have lived here. In 1999 it was frozen for the entire month of January.

Feeling a Touch Better

2011-01-23T09:06:00.000-08:00

After the horrid day of repeating anaphylaxis, I am starting to feel little better. My pulse is a little slower. Hopefully my heart has reset itself.

I finished book number 6 of 2011 - In the Company of Others by Jan Karon. It is the latest Father Tim novel. I enjoyed it very much, but would suggest beginning at the first of the series rather than starting with this book if you have never read any of the Mitford series. I love that local places are mentioned often in the books, since Mitford is actually Blowing Rock, NC.

I have finished an outfit for the grandson. A knitted onesie with a matching hat and socks.

I haven't been able to do much spinning due to pain in my hips, knees and feet, but when I can I am spinning up some alpaca fleece for a hat and gloves for Scott. He has certainly needed warm knits this winter. Alpaca is the warmest fiber I have found. Much too hot for me.

A Rough Stretch

2011-01-21T13:42:00.001-08:00

Three Epipens in 24 hours! This is not my idea of a good day!

Quiet Day

2011-01-19T13:41:00.000-08:00

I finished book 5 - it is a knitting book but has lots of knitting history in addition to patterns from 1600s - 1800s. It is very interesting - to me anyway :).

All is quiet here on the hill. The street has thawed but the driveway is still ice. It is a very grey day.

My heart continues to beat, as Dr. Haddadin puts it. When I laugh at him and tell him it is supposed to beat he tells me it is inappropriate. I am inappropriate. Basically as long as I stay very still I have a normal heartbeat, but any activity speeds it to an inappropriate level. I do just a little work, sort a load of laundry, empty dishwasher, etc and then have to lie down until my heart settles. It is an annoyance. A year ago I bounced around doing anything I pleased. If only I had known this would happen there are so many things I would have done.

My IA has been stable for the past few days. I have had itching and flushing but no major issues. I am thankful for this at least.

Five more months until the grandson is due. I am so anxious for his arrival. Five months isn't usually very long but in this instance it seems like forever.

Finishing Things

2011-01-16T10:27:00.000-08:00

I finished book 4 of 2011. It had a great twist at the end.

I finished the knitting on my big blue sweater. Once it dries I just have to weave in the ends and sew on the buttons.

I am continuing to have a very rapid heartbeat. I get out of breath and shaky very quickly - not sure what is going on, but hoping it goes away soon.

Living in a Snow Globe

2011-01-12T16:18:00.000-08:00

I'm tired of living in this snow globe. My entire 8 hours out of the house today was out in a bigger snow globe. Yuck - I am so ready for summer. Listen to me being a normal person complaining about the weather. In reality the weather is very unimportant in my life.

From where I left off yesterday - I had another anaphylaxis yesterday afternoon. I did ok and recovered fairly quickly.

My immunology appointment was unimpressive, at least to me. We bumped my prednisone dose back up and he added a sleep aid for when I am on the high doses to hopefully help with my exhaustion from sleepless nights. Dr. Krish was concerned that I am averaging 1 anaphylaxis per week, which is up quite a bit from before the holiday season. We are going to taper the prednisone down very, very slowly if possible.

While we were eating lunch, I got a whiff of perfume. Some lady had been seated behind me with perfume or scented lotion. Almost immediately I was coughing and congested - Daddy thought I was choking. Thankfully cough and congestion was as far as it progressed. I am still hoarse from it, and when the Cardiology resident listened to my lungs he thought I was a smoker. I honestly cannot understand why people insist on wearing that stuff. It will be quite some time before I am brave enough to venture into a public place again.

My cardiology appointment was also unimpressive to me. My heart rate continues to be high along with high blood pressures and frequent Nitroglycerin doses. Dr. Haddadin says this is damaging my heart. He once again increased my calcium channel blocker dosage - this time to the absolute maximum daily dose. If this does not work, we have to look at other options (not medication). I cannot use any other medication because of my IA, so that means I may have to have the ablation of the sinus node and placement of a pacemaker. I am praying that the medicine works, but if not, Scott and I do have a friend who had the procedure done and does very well. He is also much younger than me.

One last rant - why does a resident ask me what causes IDIOPATHIC anaphylaxis???? A resident should know the definition of idiopathic. GEEZ!

I am listening to The Black Echo by Michael Connelly. It is a murder mystery. The characters were tunnel rats in Vietnam. I am enjoying it very much.

On the knitting needles - a blue cardigan for me, a pair of blue lace socks, also for me, and a green baby blanket for the grand baby.

Hoping for a sunny tomorrow!

Winter Blues

2011-01-11T09:22:00.000-08:00

I haven't left this little hill since New Year's Eve. Only 4-wheel drive vehicles can get up my hill, so I am pretty isolated right now. Tomorrow I have appointments with my doctors, so I will be getting out of the house. It seems a little sad to look forward to a doctor's appointment just to get out of the house.

With the prospect of leaving the house I return to my fear of exposure to a trigger for my anaphylaxis. You never know when you are out of your controlled environment when you may get accidentally exposed. People have no idea how easily they can make someone very sick. Another patient wearing perfume or scented lotions may send me into anaphylaxis.

Last night I was very tired from pushing myself to do more during the day. I have been told to try and build my stamina, and I have made slight improvement. I can now empty the dishwasher all at once without resting. That is my max at this point, but is certainly better than resting twice during an emptying. I actually made a pot of soup, spent time writing checks for payments on my many medical bills, and did a couple of loads of laundry also yesterday. The fatigue did sent me into anaphylaxis again, so once again I took a step backward. I am very weak and tired today - usually post anaphylaxis stuff.

I continue to be so very thankful for my wonderful family. Without them I would not survive.

I also want to thank the parents of the Mastin twins, who are helping me with some of my PICC line supplies. Every small thing means so much. They lost their Great-grandfather Junior Martin this week. Please remember their family in your thoughts and prayers.

Snowy Day

2011-01-07T14:21:00.000-08:00

Snowy days are pretty, but they are not my favorite. Snow complicates everyone elses lives.

This week has been pretty much my normal ups and downs - nothing out of the ordinary to report.

I finished book 3 of 2011 - The Pillars of the Earth by Ken Follett. It was a great audiobook. I liked it so much that we are watching the miniseries on Netflix.

OOPS!

2011-01-03T06:00:00.000-08:00

Yesterday was a good day. Casey and Kristen were here. We had 4 foot subs for lunch. I finished book #2 of 2011 - The Granny Diaries by Adair Lara.

UNTIL...

I got accidentally exposed to a scented body lotion last night.

From that point on it has been rough. Congestion, mucus, cough, flushing, nausea, reflux, and all the other wonderful things that make up Idiopathic Anaphylaxis (IA). It is so frustrating that someone making a small mistake can send my body into such a frenzy. I feel so bad when something like this happens. It is terrible for everyone to have to be so careful, and I feel so helpless because my body does these things.

Needless to say I was up all night. I still feel like my internal organs are shaking, and I still have mucus in my chest. I really just want to curl up into a ball and cry. I get angry with my body - I hate not being in control.

Scott stayed home with me today since I still don't feel stable. Not only does IA disrupt our lives, but also the lives of his coworkers. Today is pity party day - I'm going to go put on my big girl panties and get over it.

The First Day

2011-01-01T16:09:00.000-08:00

At some point in my life I was told that whatever you do on the first day of the year is what you will do al l year long. I have made a point of knitting, spinning and scrapbooking today - just in case it is true.

My birthday party tired me out, but I'm doing pretty well. I finished my first book of 2011 - Blind Faith by Peggy Poe Stern. It was a birthday gift from my friend Kay. I started it right before midnight last night and finshed by 3PM. It was a terrific read! If you are interested you can purchase a copy at http://peggypoestern.tripod.com/ I have loved all of her books except the ghost story book. I guess they just aren't my cup of tea.

Out with the Old

2010-12-31T14:37:00.000-08:00

The end of 2010 is not a sad thing for me. This has been the worst year of my life.

It hasn't been all bad, and I have learned so much, but I am ready for a new beginning.

Goals for 2011:

Read or listen to more books.

Try to do a little more every day to regain my strength.

Have some fun every day.

That isn't too much - hopefully I can accomplish this small list.

Happy New Year!

A Snowy Birthday

2010-12-27T12:32:00.000-08:00

I finally see some blue sky outside after 2 days of snow. There is 8-10 inches of snow here and my driveway is a mess, so we have postponed my birthday party.

As for my ongoing drama - I dropped a block of cheese on my foot yesterday and I think it is broken. It is a lovely shade of blue across the metatarsals, swollen, and aching. I made through Christmas without a cast boot this year at least - I had one on the past 2 years. Dr. Hare is back in the office tomorrow so she will get me fixed up.

Other than the foot thing, I am enjoying a peaceful birthday. Scott brought me some biscotti with real sugar in it. I love biscotti! It is ok to cheat on your birthday - right??? Off to fix a cup of herbal tea and enjoy.

Sights and Scents of Christmas

2010-12-25T07:56:00.000-08:00

I sit in my recliner watching the snow fall outside, with the smell of turkey deep frying outside drifting indoors. It is such a heavenly scent and sight. My little dog Carmen is curled up on top of the sofa where heat comes up from the vent. All is peaceful and quiet.

I can't imagine God giving us a more beautiful day. Soon we will be off to my brother's house for an afternoon of gluttony and merriment. I can't wait to see what heavenly treats my sister-in-law has made this year.

Three of my uncles are spending thier first Christmas in Heaven today. I have sweet memories of them and envy the birthday celebration that they are having. Rest in Peace C.L. Edwards, Harold Matheson, and Willis Walker. You are missed.

Merry Christmas

2010-12-24T07:48:00.000-08:00

Each day I hope to be well, but so far it just hasn't happened. I push myself to do more, and I have gained a baby step, but not any significant progress. Nitroglycerin is now a better friend than Epipen.

Even on my high prednisone dose I have had a couple of rashes but at least there was no swelling to block my airways.

Despite my illness, I am very blessed. So few people have a loving and kind family who is willing to give so much of themselves. I could not have survived without the help of my family and friends. Every thing that each of you has done means so much. Things may seem small to you, but when it is a major undertaking to do anything, even the smallest thing is such a blessing.

I wish to be well for Christmas, but if it cannot be I know that God has a reason for my illness. I have learned to trust him for all my needs.

Wishing all of you a very happy Christmas.

It's a Boy!

2010-12-16T15:38:00.000-08:00

My little grandson turned his butt up and spread his legs! He is just shy of 3 inches long. In one picture he is holding up his left fist. He is already beautiful! He also has his Mimi's big belly. I will post the ultrasound pictures as soon as I get a copy.

This baby gave me a reason to live. I was ready to stop fighting until I found out about him. Now I fight to get better so I can rock him, bathe him, and hopefully play in the mud with him someday.

Doctors Visits:

Cardiology - Pulse is still too fast. He increased my medication to maximum dose. I am to push myself with exercise to see if I can build any stamina. (Already doing that!) ;(

Immunology - Dr Krish is leaving the country. Stress tends to bring on anaphylaxis in patients like me, so my prednisone is now at an all time high dose through the holidays, especially with the stress of knowing he is in India. I can be in contact with him by email, but it is still stressful knowing he is gone. My kidney function is too bad for any of the other drugs, so we have to use prednisone and Plaquenil. After the holidays and Dr. Krish is back in country we will try to bump my prednisone back down to where I am currently. He says Plaquenil will take 3 months to build up to a point that we can safely try to drop the prednisone further.

Dr. Krish stocked me up with emergency antibiotics and Tamiflu, and my Internal Medicine doctors are aware, so if I get into urgent trouble they can help. I did get my flu shot, but Dr. Krish says it will only be about 30% effective for me.

I am also being referred to Nephrology to see if they can improve my kidney function. This is different from my Urologist. Nephrology deals with the filtering system - urology deals with the drain system. Hopefully they can do something to improve my function or at least stop it from getting worse.

All Christmas knitting has come to a halt - sorry to those who will be cheated. I'm off to cast on something for our little boy!

So Much for Feeling Good

2010-12-13T10:57:00.000-08:00

Yuck! I woke up this morning with a stuffy runny nose, watering eyes and scratchy throat. I don't know if it is a cold or an allergy attack bit it is no fun.

We have about 8 inches of snow on the ground with more coming down. I'm spending the day with warm drinks and watching Food Network.

Pretty Good Weekend

2010-12-12T16:36:00.000-08:00

As long as I keep myself parked in a chair, I can forget that I am sick. As soon as I move my heart races again. I'm not complaining. I can sit and knit. I sat in the truck and went across the two mountains to visit Casey. Being able to feel well sitting around is a big improvement.

Other than one episode of a rash, there has been no anaphylaxis in 10 days! Hopefully things are finally changing in a positive way.

Snow is pouring down outside. I just talked to my brother who was going to put chains on the fire engine so he could go in the snow if someone has a fire.

We got to tour Casey's soon to be new home. The area is beautiful and will be a paradise in the summer. The house is very roomy, with a nice big kitchen. Scott and I loved it. It was warm and cozy with plenty of room for the growing family. There is a big yard with a small creek beside the house, and it joins the National Forest.

Casey's tummy looks like she has a cabbage under her shirt - not a big one but she does look pregnant. She is changing - she is really starting to sound like someone's mother talking. :)

More of the Same

2010-12-09T13:36:00.000-08:00

I did better for a few days with the medication changes but I am back to having a racing heart even sitting still. I am thankful for the nitroglycerin tablets which take the chest pain away, but I still get very short of breath and weak.

Unfortunately I have no good news. My kidney function has gotten a touch worse and is being watched closely. I don't feel very well.

Santa's workshop is not making very much progress. I think this elf may need to be fired. I am hopeful that I will have enough good days before Christmas to finish a couple of very special gifts but I know the recipients will understand if I cannot get them done. This is a busy time for me normally, making cards, treats and knitted gifts. I am truly thankful for all the great years when I could work all day and craft half the night. This is a year of change.

Before and Now

2010-12-05T10:57:00.000-08:00

The first picture is a few weeks before the first anaphylaxis on 4-23-10. The second is Thanksgiving Day. The medications are taking a toll with the horrible side effects. The only option other than the drugs are death, so it is an easy choice to stay on the drugs.

Today I am so swollen that I cannot get shoes on my feet at all. I have no energy and no appetite. The Gastrocrom that I started on Friday is helping some, but it takes time to build up. The same is true with Plaquenil.

There is about 2 1/2 inches of snow on the ground with flurries still falling. It is a good day to just sit and watch the snow.

Saturday with My Baby Girl

2010-12-04T23:48:00.000-08:00

Casey came over and spent the day yesterday. She is glowing. She took me to the hospital to get labs and then home for the day. It was nice just to spend the day chatting.

21 Medications

2010-12-03T15:32:00.000-08:00

Today my 21st prescription medicine was called in to the pharmacy. That does not count my PICC line supplies. I really should be full from just medicines without having to eat food.

Last night I had another anaphylaxis - this one quite a bit worse than routine with some new symptoms. A bit scary!

I have a had a pretty good day today. I have been up most of the day. I have made a few cards and did several loads of laundry. I love a good day! They are so rare that they are precious gifts. I wonder if I can manage 2 in a row??

Two Steps Back

2010-12-02T16:24:00.000-08:00

Remember the old saying - take 1 step forward and 2 steps back. I feel that is what I am doing. Today was my Immunology appointment.

I wanted to try to get in the Xolair clinical trials for Idiopathic Anaphylaxis but I have to be totally off prednisone to be considered. Dr. Krish feels that I am prednisone dependent and probably will never get below 20 mg per day. He is adding Plaquenil to my drug regime and hopes this will help me lower my prednisone dose a little bit more. I am also going to start taking Gastrocrom for the gastrointestinal symptoms that I get with anaphylaxis.

Remember the dreaded doxepin that everyone that I thought was the cause of my tachycardia???? Remember that no one would listen to me when I said it was not the problem??? I start back on it tonight. LOL When will doctors ever learn to LISTEN to the patient. I was on doxepin for months before the tachycardia started! Doxepin is classified as an antidepressant, but it has H1 and H2 blocking properties, anticholenergic properties (for my tummy) and helps me sleep better. I really felt no big side effects from it other than drowsiness, and it isn't a lot better off it because I was still taking huge doses of Benadryl around the clock. If it works, don't fix it. The only down side to doxepin that I have is that it does increase my appetite. Dr. Krish said I was too fat today. NO JOKE - I have a mirror! I have averaged gaining 1 pound per day this week and I have not been eating very much.

Plaquenil is known to cause problems with the eyes, but since I checked out very well with the Opthalmologist a few months ago we are going to give it a try. It has less side effects than some of the more commonly used drugs to control IA.

Our long term goal is to get me to no more than 1 anaphylaxis per month. Does anyone know someone who would hire a person who might go into anaphylaxis once a month???? If I were an employer I would not. You cannot be very dependable with the dark cloud of IA following you around. Tomorrow I will call my Long term disability case worker and run that by her.

I am having a PVT with LV DLCO with and without on Tuesday. That is a fancy PFT with an inhaled contrast. They are looking for some lung problem that will explain why I can't breath. Cardiology thinks I have pulmonary hypertension. I have a message to call them also, probably to be scheduled for a right heart cath or a Swan-Ganz catheter. It is put in through a vein in my thigh or neck and ran through my heart into the artery going to my lungs. They can measure my blood pressure there to see if that is the problem. My internal med doc told me yesterday that they might be doing that test it is the best test to determine if pulmonary hypertension is the problem.

As for everyday life, such as it is, I haven't felt like doing anything this week. No knitting, not even TV. Cuddling up with Carmen is about all I can handle this week. It is odd but I actually feel better mentally since Dr. Krish is not so upbeat and positive. I am a total honesty kind of girl. If this is as good as it gets, tell me. I will deal with it and adapt. When people tell me I am going to fully recover and I feel so bad I can only take 3 dishes out of the dishwasher at one time before resting, I feel frustrated and angry with myself. Please just give me plain simple truth! If it gets better than expected HURRAY! If not then it is no surprise and my life will go on as "normal" for me. I've seen this happen to patients during my 21 years of nursing. People with incurable cancers think they are going to get well because doctors don't give them plain and simple truth. My favorite memory of a truthful doctor is Buddy Clayton. He is a Family Practice doctor who now works in Urgent Care. I worked with him for several years. Most patients loved him, some hated him. If his patient was on the downward path he just sat down and asked if they were right with God. If they said no, he told them they had better get that way because they were going to meet him soon. If they said yes, he said good. That is what I want! Tell me!

Oops I did it again!

2010-12-01T18:29:00.000-08:00

19 days with no anaphylaxis, but IT"S BACK!

I saw my Internal Medicine doc today and told him I wanted my flu and pneumonia shots because I was finally down to a low enough dose of steroid to get them. He wanted me to wait and have Immunology give it tomorrow. UGH!

At least they can't say the flu shot caused the problem. Such is the life of a person with Idiopathic Anaphylaxis.

Yesterday my coworkers from Blue Ridge Ear, Nose and Throat sent me the most beautiful card with the kindest wishes and a hand full of cash to pay on my bills. They are the most incredible group of people I have ever met in my life. Not everyone fits there - I don't why - but when you stay for more than a year it becomes just like your family. I felt that way long before I was there a year, but it does take some people a touch longer to mesh. They are my brothers and sisters - we are a family, a church and there for each other. I thought that would go away when I had been gone for a few months, but they reminded me that I am still part of them. I love them all so much.

I had another big adventure today. Scott and I went to Food City. He pushed me in a wheelchair of course, but I did get to go to the grocery store. I am so easily amused.

As for how I am doing - the shortness of breath is getting worse. It takes even less activity than before to set it off. A trip to the bathroom is about the max before shortness of breath sets in. The docs are going to pull out my echocardiogram films and review them again. They are now suspecting pulmonary hypertension in addition to the other problems. I looked it up and the symptoms fit. We will wait and see.

In 2 weeks we find out if we are having 1 or 2 grand babies. There are twins on both sides so it is a possibility. Casey's belly is growing fast. We are having lots of fun making up names - all are vetoed by the parents. LOL

Officially an Old Woman

2010-11-29T20:06:00.000-08:00

Today I thought of my Granny as Daddy pushed me in a wheelchair through the produce section of Walmart. When Granny was having radiation for her cancer, she became so weak that Aunt Joyce got a wheelchair for her to make it easier to get her where she needed to go. I would sit in Granny's wheelchair and roll around in it. Granny said if I ever had to sit in one it would not be so fun! Once again Granny knew what was true.

This was the first time I let my pride go and rode in a chair except for at the hospital. It isn't fair when your parents have to push your chair. It is not the natural order of things. I cry as I type knowing how low I have gotten.

Today was my cardiology visit, and ... another old woman sign... nitroglycerin pills. I expect to wake up some morning soon with gray hair! My friend Kay says my hair is as pretty as ever, so at least I have one thing going right. Of course my cardiologist truly believes he can fix all that is wrong and turn me back into the old Cindy Lou. Every doctor I see believes that, and I hope that one of them is right.

I sit and look at gardening supply catalogs and dream of what I will grow next year if I am well. I dream of going to work every morning. I dream of sitting on a beach watching the sun rise. I even dream of being able to cook a meal. Maybe someday...

Littlesisknits Blog

Not Much Happening

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ebookfling.com

WooHoo!!

Good News

More of the Same

Cold and Snowy

Lots of Reading

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Thankful Once Again

Running Up and Down the Highway

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A Slow Mend

Finally A Diagnosis

Back in the Hospital

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Warning: disturbing pictures

More Bad News

Great Ice Packs

Trials

Thank You Blue Ridge ENT!

A Long Hard Journey

My Grandmother's Knitting

Book 24 - Bad Blood

Sixteen Brides

Unanswered Prayers?

Side Effects

Finished 1 Sock

Ketotifen

Bread Machine Heaven

Secret Revealed

I Am Moved

Book 20 of 2011

Book 19

Stone Cold

Labor Day

Embraced by the Light

Very Special People

Guest Blogger

Sorry!

Denied!

Book 13

Don't Ever Say Things Can't Get Worse

Bentley Michael Harris

I Still Get Scared

Still Here

Jesus Didn't Say Judge Your Neighbor

How Am I?

Unwell

Feeling Better

A Day with the Docs

One Year

Bad Days

Nothing New

The Enemy We Can't Fight

April Fool

The End of a Long Stretch

High Hopes

Election Day

The Rodney Dangerfield of Rare Diseases

A Very Difficult Day

Discouraged

Father-in-law Update

Blessed

Never Ending Drama

Finally Feeling Better

Fighting the Flu

99 Years Without Parole

My Driveway is Thawed!

God Does Answer Prayers

Waiting

Short Lived Improvement

Feeling a Touch Better

A Rough Stretch

Quiet Day