First of all...I am so sorry for not replying in a timely manner. E-mail has been difficult for me lately. I just can't remember to check it and then when I do, I get so over-whelmed.
THANK YOU for thinking of me and taking the time to call. Doug said that he spoke to (name omitted) recently. That was so kind of you both to think of us.
I spent 10 days at my mom's house and just got back in time to go to the Dr. appointments that we had scheduled here. Now I'm paying the price...I'm just so beat! I have about 4 hours a day that I feel like doing anything and the rest of the time I just want to sleep...But I'm hoping it is just a result of all the activity...and I will get back on a schedule and feel better.
As for my recent Dr. appointments...They went well. I had prepared myself for the worst and that pleased to walk away feeling more positive than anticipated. Our big consult with a couple Dr. to talk about our options and their opinions and to discuss our thoughts and such on a treatment process was very informative and helpful.
Here is the gist of what the appointments and consults came down to: My condition and the reactions that I have are new to these Doctors and most doctors as CUSHINGS is rare and much of the endocrine system and the hows-whys are a mystery....and as there are so many variables, there is no way to know what exactly caused my initial problems and we may never know. Additionally, there is no "standard" in which to compare to...and any Doctor that says so, is not worth his salt. So...knowing that there is no way to go back and recreate a pattern to know why and when, we have to move forward. We Doctors are fairly certain that it is not Addison's Disease. From the test results they were however able to conclude that I am in fact GROWTH HORMONE deficient. There is a replacement therapy for this, but as an adult, the risks out-weight the benefits. My blood sugar reacted as it should have which takes the concern for diabetes out of the picture. That is GOOD! The problem occurs when you start looking at my cortisol levels. YES...that same little booger that caused the tumor to begin with. I used to produce too much, and now I produce too little. Somewhere along the line, my adrenals are not receiving the correct signal from my pituitary to produce what they should. Maybe because the pituitary was scarred and injured in the surgery and removal of the initial tumor. That means that I am faced with two types of treatment...one that could mask the problems, maybe make me feel better, but could have some detrimental long term side-effects that may, in the end, cause another brain tumor and really not fix anything. The second option is to try and give my body some more time to balance and correct itself. We try to changing up my meds a bit...the same stuff that I'm taking now but a stronger dose to hopefully give me body a chance to do it's own thing....balance itself. Our Doctor is hopeful this will work as my body is showing some reaction, however small in the tests and may mean that it just needs more time to do it's own thing. SO....that is the direction we are going to try....The more intense treatment....our other option, we are putting on the back burner for 3 months.
SO...I am pleased with the understanding and open sincerity with which these Dr. are communicating with us, and I feel that I have a better grip on my reality right now than I have had in quite a while.
That being said, I'm feeling a bit tired and worn already with the change in meds...I'm having the common reaction to the change in meds that we anticipated...It may take my body a couple weeks to adjust, so I've just got to ride out the nausea, vomiting, spins and the crazy intense diarrhea...sorry... that was probably too much info....but CHRIST....it isn't pretty. I'm awake at night and exhausted during the day. Any time I'm awake I'm dizzy, having intense hot and cold flashes followed by the "urge to purge" AND, my ass hurts! :) I guess there is a bit of humor in the whole thing if you consider the picture that must create! :)
So....that is where we stand right now.
We are so thankful for your concern and caring. Going through so much yourself, we appreciate knowing we are in your thoughts and likewise hope that you know you are both in our thoughts and prayers always.
I hope that you are finding moments of peace in your own journey that you can enjoy.
Love and hugs!
~A
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