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.
1 comment:
We just have to keep faith that it will get better. Every day you make it through is a triumph, just keep pushing as best you can.
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