Hello Dear Friends!
I know that I’ve been neglectful in staying in contact and I apologize, but as per the norm, and as it is with everyone, things are always busy.
Honestly, I have procrastinated in writing this email for a couple of reasons. First of all, it wears me out and depresses me just to think about it. Second, and what weighs most on my mind is that I know hearing of my health issues is getting OLD! Trust me…I’m at the point myself of not being able to face much of anything right now without tears and an immense amount of frustration.
Some of you may know that I have been in and out of the ER, Dr.s offices and having all sorts of tests (some rather brutal) done for the past month. Others of you may not even be aware of that, but that is because we haven’t really shared that info with too many people. Again, we understand how busy everyone is and that you all have your own “stuff” going on to cope with.
My Endo had been struggling with trying to figure out WHY things aren’t fixing themselves and balancing out as they should. They have been very thorough. I even got FOOD allergy testing done recently. That being a bright spot in the latest results, we found out I am not allergic to any major food group and had no negative reactions to many of the others we tested for! THANK GOODNESS! Food allergies are so hard and I have plenty of other flora and fauna allergies to deal with!
The most recent testing that I had done was designed to induce seizures, immune system, and endocrine system failures in a controlled environment under the very watchful eyes of a gaggle of nurses and 2 physicians. I was not crazy about the idea, but this type of testing it much more accurate than simple blood work and the panels that we have been doing.
The results of these tests were not favorable. Bear with me here as I try to explain. First of all, and our bright light in the whole thing –
My sugars - they maintained fairly well…good and level. That is great news as we can eliminate Diabetes from our immediate concerns.
However, the results associated with my endocrine and immune system, growth hormone, as well as my pituitary and adrenal function were not so cheery. This is an overload of info, so maybe I’ll explain this bit by bit….
Growth hormone – this was not responsive meaning that my body is not secreting any on its own. This is not something that can be supplemented. The risks out weight the benefits for adults. This helps explain why after working out at the gym, or after physical activity, when others would feel energized…I am falling asleep.
The tests results also showed that I am severely Adrenal Insufficient. This is our major problem. Adrenal Insufficiency is pretty scary, especially at the level in which I am functioning. My body was producing too much cortisol before my surgery and now has flip-flopped and is not producing enough. This means that my body is unable to cope with any and all stresses….Physical – such as muscle fatigue from yard work, working out at the gym, getting over hearted, or even just over-exerting myself in any normal form. Chemical – this refers to any form of stress related to my immune system and viruses, allergies, colds, anything that could cause your immune system to step it up a notch to ensure you feel ok. Mental – this of course is your standard stress that comes from dealing with situations, people or events that cause us our average stresses in life.
What exactly does this mean? It means that my body is not sending the signal from the pituitary to the adrenal glands to “rev up” my adrenalin and cortisol production needed to protect my body and keep all my body systems going. Because of this deficiency, when my body asks for help as a result of any stress, it gets nothing and my body systems and functions simply – SHUT OFF. We had an example of this just this Monday morning when after dealing with a stressful situation on the phone, my blood pressure dropped to 128/48 in a matter of minutes causing some alarm at the Dr.s office. The thing that is concerning to us is that I “felt” fine, even when prompted by the Dr….I told them I only felt a bit tired. Obviously, this can happen very quickly. I could be ok one moment and in Adrenal shock the next, and then….dead.
I was a bit taken back by that and shocked to say the least. BUT….ever thinking and looking for the positive, I jumped right in and said, “OK….but we can give my body something to help it and prevent Adrenal Shock, right?” The answer is yes. The treatment for this is to supplement synthetic cortisol in your body. That statement brought about a long pause....for the Dr and me as well.
Bad news is - I can’t have cortisol supplementation as I have Cushings Disease. Supplementing cortisol into my body is giving it the “uber” food that it needs to build more tumors.
So, we are in limbo right now. The more Doug and I find out about the endo system the more we are coming to realize that the medical profession is really just as confused as we are. My Dr. stated very honestly, “There are just so many variables.” The Dr.s at UNMC are diligently looking into alternatives and we are doing our research as well. We have a consult scheduled in a couple weeks. This gives them some time to look into some things. In the meantime, we are doing the same and asking that if you know anyone who might have some tid-bits or ideas to share….please don’t hesitate to let us know. We are trying to educate ourselves, making notes, writing ideas, questions, and are open to any suggestions, ideas, or thoughts.
I know it is a lot to wrap your head around. I’ve been struggling with it myself. I’ve been very focused on better health and the idea that things would get better and that this would all go away. I don’t fault the Dr.s for telling us that, but coming to the realization that this is not going away and that we are continuing on this journey….well, it is a bitter pill for me to swallow right now.
Please don’t take offence to the fact that I wrote just one email to include you all. I just can’t get myself together enough to be able to tell the story over and over again…I don’t think that I could do it and stay composed. AND, Doug and I both agreed that we are just so unsure about sharing this with people because we don’t want to add to the loads that everyone is already dealing with in their own lives…BUT…I didn’t want you left out either as your support and friendships have meant so much to me.
I don’t know really how to close this note as it was of somber content. So, thanks for being in my life and for caring.
Autumn
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