I should really be sleeping, especially when you consider the fact that Daylight Savings Time is going on so I will be losing an hour of sleep already. But there are so many things weighing on my mind and my heart. I have been extremely frustrated for the past few days for a variety of reasons, none of which are related to each other mostly besides the fact that stress helps NOTHING when it comes to Mito symptoms, or any other issues for that matter.
I can't hold it together any more. I haven't let myself break down about anything lately. Everything is usually held back now. Generally I'm an emotional person, albeit timid and private. First in January I was in the hospital and it was looking bad. I was in ICU for the first day and a half of my stay and then transferred to a stepdown unit.The seizures have continued, they are not as severe as that terrible night, but they still happen. Now with the kidney stones...seriously I'd almost rather seize. EEEEEEKKKK painful. They do say that at times kidney stones are worse than childbirth. Well, if that's clue I have that in the bag when/if the time comes! Lithotripsy was done on Friday night and another stent put in. I was discharged from the hospital on Saturday and the stent was removed on Thursday. Further testing needs to be done in order to determine what causes my kidney stones (I pass them a lot without knowing....this time I knew because it was huge and messing stuff up) as well as what can be done to treat them. I see Dr. Latefi in June.
Mitochondrial disease is a bear of an illness. It doesn't just take away your energy, it sucks everything out of you. People who don't deal with that can't understand what it's like. Mito steals the lives of its victims and does not discriminate based on age, religion, race, or gender. For me, sometimes I realize that I have become a person that I no longer like or recognize. I have been trying to do everything I can not to let this happen, but I am only human and sometimes that is what happens when you are chronically ill. At any rate, my fatigue and pain levels have been quite high. Without a clear diagnosis, I have very little hope of any type of symptom relief, nor will I qualify for ANY clinical trials for patients with Mitochondrial disease. Clinical trials give some semblance of hope, at least. I know some people have seen improvements with the current study, I forget what it's called.
It's the worst feeling in the world when your family just has to sit and watch you suffer, being almost completely unable to help you. It's a kind of desperation no one should know. But, it's part of most diseases, and Mito for sure.
My focus has been terrible lately also and my grades are showing it! I need to pass nursing school so I can start to get on with my life! I'm hoping my doctor and possibly my instructor will have some ideas. It wouldn't make sense to stop this late in the game.
There's so much more I want to write about...there's a lot going on in my life that I haven't written about on here yet. But I am so tired. And close to tears.
I will say this, PLEASE pray for my Grandpa Donald, (great grandpa actually) he is in kidney failure in the midst of a battle with Parkinson's disease and he is in his final days with us on this earth. I really don't think it's going to be very long. This is a very difficult and emotional time for my family. We just want him at peace. My grandma is also there after she had a major stroke two years ago in July. However, she knows what is going on with grandpa. She's actually very observant and picks up on things like that VERY easily. Please, pray for peace for all of the family and friends, as well as these two wonderful members of my family. These losses NEVER get easier.
No comments:
Post a Comment