I have officially gotten my appointment for the National Institute of Health and will be going there the 1st of October and staying through the 6th. Since I have such a while to go before actually arriving they want me to be on some medicine to raise my estrogen in the mean time, though preferably not oral. They want to avoid the meds going through the liver as much as possible. So, my doctor first tried the patch (Vivelle Dot) and I put it on and happily loved the fact that I didn’t have to remember a pill every day. So, about three hours later, I was no longer loving the item. Apparently I was allergic to the adhesive that attaches the patch to the skin. The fun result below….nice pretty red patch/burn from the tape.
So then, my doctor decided to try a “spray” type of medicine that is applied daily. The application was easy enough but the results much the same as the patch. A nice rash! Grrr
This week I go back to the hospital for a few more tests (existing hormone levels etc.) and hopefully a new type of medicine. The most awful part is not the rashes. I honestly tried my hand at having the ones on my arms for a little over a week in hopes that my body would eventually immunize itself from the skin condition because it feels so much better to have that hormone in my system. For those of you “normal” people that produce all the right amounts of everything, being without these substances is so difficult. They control everything…..sleep, eating habits, mood, digestion, EVERYTHING! Whenever my levels drop I do not sleep. At all. I am tired, I just don’t fall asleep. I also gain weight which is awful especially for a person who works out as much as I do. For heaven’s sake, I never sit down at work! 
My bones hurt without the hormone and will become fragile. The naseau and hot flashes are no carnival ride either. 
So, as you can tell as scary as it is to be on all that medicine, it is so worth it to me. I think there are pros and cons to both. Without it my quality of living is terrible…my bones fall apart and my heart walls weaken…and with it I have increased risk of blood clots and cancer. I am just hoping the good will out weigh the bad and I can stay on top of things by eating, working out, and of course regular trips to my favorite doctors.
I am praying that the medical staff this week will be able to figure out something that will work until I can get up to DC. I am very fortunate to have a really great team of doctors here in Columbia that are willing to learn as much as they can to treat this condition without having any other patients like me. My direct doctor has been so great I am considering sending her flowers at work. She takes phone calls after hours, tries to give me samples if she can, and has gone above and beyond the call of duty! :) I am very appreciative of the samples because the first two we tried cost me 30 bucks a pop. :( I am excited about the chance to go to NIH and have a team of experts meet with me and give me all the knowledge they can.
P.S. To answer a friend’s question about what they recommend I take daily:
- Estrogen (administration to be determined)
- Prometrium (a natural medicine to help prevent endometrial cancer in women who still have a uterus and is only taken the last 14 days of the month)
- Zyrtec – to offset any allergies to any of the medicines (obviously doesn’t work for skin!)
- Calcium – lots of it!
- Vitamin D – got to have it to absorb the calcium
- Lysine – amino acid that needs to be higher
- Multi-vitamin – I prefer the gummies….mmm so good.
The following I don’t do always but just when necessary as they recommend:
- Black cohosh as needed – helps with systemic problems such as hot flashes
- Ginger chews/tablets – helps with the nausea
- Melatonin – only as needed but helps one stay asleep after getting asleep
Here are some things that I am supposed to do that I have got to GET BETTER about doing. Perhaps some of my loyal readers can help me become accountable!
- Lift weights – at least 3 times a week (I am averaging once a week
:( (the weights help strengthen my ever fragile bones and prevent breaking)
- Yoga/Meditation – The yoga part serves two purposes – adding flexibility to joints that need it. As it is difficult for me even to sit criss-cross these days because my hips hurt. The yoga will also help my balance and bone strength. The other part of yoga helps with stress relief and well being.
- Eat less processed foods – This one I try really hard to be successful at but Lord knows it is so expensive to eat “whole foods” all the time. I am trying though! I have changed the ones the doctors say have the most impact on===milk, produce with skins that I eat, and limit white grains.
Please know that while all this seems a bit overwhelming on some days and I can get a bit down or frustrated….such as this week when no one can seem to find an answer and this post was written….Most days are actually just fine. They are not always great, but they are much better than some people have. I am always trying to find the “positives” in the situations and just remember despite my diagnosis it could always be worse. I am thankful that I have a supportive family (especially my husband since he is the one who has to deal with me the most and probably deserves an award most days), my hobbies (as they distract me from moping and feeling sorry for myself), and my friends ( I have really REALLY great people in my life) and all of these things make all the rest endurable!
