This weekend was a year from pituitary surgery. And I have to say that the past couple of years have been interesting to say the least. You know, you have been reading and following my story. Last year I had no freedom and was confined to my hospital room and by my disease. While I had visitors from family and friends I was still not in control of a single thing in my life. I hope today you reflected on your life and were thankful that you have such freedoms to live…I almost lost mine and am fighting to get it back.
Anyway, at this time last year I was lying in bed or sitting on the toilet every 15 minutes losing gallons of water while they figured out what was wrong with me. I could not even pee in privacy and remember them asking why I could not have a bowel movement…umm, ‘cuz you are sitting 5 inches from me and watching! So, I watched fireworks with nurses in my room and cried because I knew all my friends were out at BBQ's and celebrating freedom while I felt that mine was being taken away by this disease. It was a sad day for me last year.
This year was not that much different than last since the disease was still confining me to a life that is not my own. But, a week and a half ago I stopped taking most of my pills (bp, diabetes, etc.) since I think they were making me feel even more ill and so far so good. Hey, my energy “healer” said if I felt an aversion to something - don’t do it or take the pills/exercise. To do what felt right to me. I have been doing this for almost two weeks now with serious meditation on healing and strengthening my body and mind. And listen, I have been eating crap and good stuff with weird cravings but somehow I feel better. This weekend I also went shopping and bought lots of nutritious food to help me finish the healing process and hopefully stop all of my drugs completely so I can return to work full time! I have stopped most of them except my headache, pain and diabetes insipidus meds – I have cut back on all of them except the DI spray and seem to need a bit more of that due to summer heat. Hopefully not being sick to my stomach everyday will allow the nutrients to start building back up in my body and make me whole again so I can live my life and have the freedoms so many forget if they have never been seriously ill…we are not talking about the flu here! How could I have expected iron, calcium and all the other pills which are hard for normal people to take to work for someone who has been through what I have.
So for now I will continue to listen to my body and if it needs medication I will take it and if not I will do whatever it tells me until my healing is complete. I can tell when I haven’t listened because I do start feeling “funny” again. Anyway, we are still awaiting my blood tests.
I could not help but be a little sad and emotional this weekend remembering last year and the possible threat of a return. While I do not have my full life back I do have many more freedoms than I did 365 days ago. But if this disease wants me again it is going to have one heck of a fight! Last year I was so scared and on July 9th I wrote “So I’ve had my pituitary surgery and am likely going to face another one somewhere in my future.” Strange that back then I knew something was wrong and I was not healing but remained a prisoner of Cushing’s.
In my journal I continued to discuss all of the headaches and pain which signaled my return to the hospital only a day or so later where I had my severe problems with sodium and potassium sending me into a borderline coma. The coughing up of blood from my head. Which, by the way, I was not supposed to be coughing because it causes an increase of pressure in my head and could have possibly popped my incision. I also wrote that at times I don’t even know my name…funny that it still happens and I am supposedly cured. Over the weekend I told my boyfriend that I notice a distinct change in my language and speech patterns that was not there before as well as memory. I hope they are a result of the fluctuation in hormones and medications due to the healing process.
Well I guess a year ago I was in a much worse place and am happy to be here this July 4th celebrating my freedom. Something I think many of you take for granted; and I don’t mean in the political/democratic sense. I mean the freedom to run and play and work and LIVE! And, if I have anything to say or do about it; I will never have that horrible surgery and disease again! For now I will focus all my energy on healing and getting my life back. Once my life is back I plan to start a foundation to help others with rare disease. I feel it is my duty to assist people who have experienced such horror and adjust to a new life – one that is not the same as they left it before they got sick. You are never the same after something like this emotionally or physically and need to make adjustments to be able to live in harmony with those and the world around you. Especially since people are not going to change to help me. And there are times when I feel that it is unfair for me to be the one to change but I realize that the world does not revolve around me but I can change the world by trying to help others through my experience and give them new perspectives on life and living.
But for now, I have to be a bit selfish and focus on my meditation and healing exercises so I will NOT have that surgery again! I will heal myself as much as possible and not rely on drugs to function. No, I am not, nor was I an addict, but I really could not function without them…breathe, eat, sleep, anything. With determination and knowledge I am beating back the need for medication – the power of the mind to heal is an amazing thing and I wish that others could see and embrace the influence over our bodies which we all hold. Hopefully next year I can tell you I only need an Advil and some DDAVP (so I don’t lose all the water in my body) – that is the one thing I am not sure will go away but at least I can learn to live with it.
So for those of you who have never had an experience like this remember my story and that of others like me so you can appreciate days like today. And, for those of you like me, try to be thankful for what you do have and we can work together to get ourselves through the hurdles life throws at us.
Back to celebrating the small freedoms I have regained…and working on getting the rest back!
You can see the shirt is a lil baggy so when I psuh my hand on my stomach similar to the photos last year in the same pose I am a ton skinnier...the skirt and top were both too small last year and are big and baggy now - I refuse to buy new clothes for a couple of reasons: 1 - I won't stay this way if I have something to say about it - my man finds me pretty anyway; and 2 - I can't afford much besides the rent...regardless if you don't see some change you are crazy! I do have to say that it is still hard to see these pics because I feel so much better I thought I was looking more like my old self - but these make me cry and realize I have a long way to go and am only halfway there...another 35 and I'll be at my orginal weight...God knows how TLC plans to make this look like a super model!
