Saturday, October 22, 2011

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.

Wednesday, October 19, 2011

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.

Monday, October 17, 2011

Sixteen Brides

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

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.

Friday, October 14, 2011

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
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???

Wednesday, October 12, 2011

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.

Monday, October 10, 2011

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.

Saturday, October 8, 2011


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.

Thursday, October 6, 2011

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.

Sunday, October 2, 2011

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 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.