I hope that no one is taking my blog as me vying for attention. No, this is my journey dealing with this disease and also to note the lack of knowledge of this disease in the medical community. Not for naught, but because we need more funding for research to find not only a cure, but also better treatments that do not cause so much harm to our bodies outside of the damage that the disease causes.
The most important thing that I wanted to share with my fellow Warriors is to fight for your life. Don’t think that you don’t have a voice. It’s your life. You know your body better than anyone. It took me to get a second and a third opinion to get action. Results were that my medical care was very inconsistent from all of my specialist’s.
The Sarcoidosis specialists requested that I receive a cardiac catheterization to find out why my BPs are unregulated. My cardiologist shot it down.
I shared with you before that I experienced two congested heart failures and several TCI’s and finally a Lacunar Stroke to say, WTH are they doing to me because it’s not working. Experiencing blood pressure’s in the 200/100s range for over three years and taking five BP medicines to no avail. Basically having a key to the hospital staying five nights or more at a time is overwhelming not only to me but also my family.
Okay, here we go. Update on my battle with Chronic Sarcoidosis. I have been recently diagnosed with Neurosarcoidosis, Cardiacsarcoidosis with damage done to my kidneys from lengthly stress from my heart related to medications. I was experiencing this burning, yet very painful burning in my extremities. Also, double vision, numbness and blackouts. See, that’s a lot. Ive experienced blackouts and numbness in my extremities before, but never to the point of just collapsing and needing assistance 24/7. I am confined to my home while I take high doses of Prednisone (no immune system) and the fact that I am very weak. Yeah, I miss my family’s visits, but they are just a phone call away. (Thanks technology 😉)
I had requested early in when I first experienced the CHF (congestive heart failure) that I have a PET scan, which is one of the best ways outside of a biopsy, to find where the active Sarcoidosis is in the body (more info @stopsarcoidosis.org). Every doctor both inside the hospital and out shot the idea down. Well finally my new doctor who is THE Sarcoidosis specialist who reviewed my case ordered one. YES!!! It was as I expected and now I have to hope that the treatments work. I don’t want to die… Especially to medical error. So now is the waiting game to see how this goes.
Remember that you know your body better than anyone. If you feel that the treatment you are receiving is not adequate, don’t be afraid to take action.
Peace and blessings to you always and forever more,