Lots of Reading

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

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

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

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

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

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

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

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.

More Reading

I haven't been feeling well this week, so reading is my outlet. I finished Embers of Love, a loan from booklending.com. It is about a logging family in Texas in the late 1800s. Things were much different then than now.

Special thanks to my Aunt Jan who sent money to help with my medications. That is by far our biggest monthly expense and we certainly appreciate the help. 

Doubts

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

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

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

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

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

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!

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

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

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

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

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?

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

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

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

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

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

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

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

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

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.