I really hate Sarcoidosis! This dis-ease has taken through many trials and tribulations over the last sixteen years. From being diagnosed in my lungs via a bronchioscopy and being scared to death each time I visited the doctor’s office thereafter. Every doctor asked if I was told how long I was told I was going to live to “you bet you should’ve never smoked.” The thing is, I never did. Next while participating in a clinical trial for a drug call Remicade back in 2001 at the University of Pennsylvania Hospital; Sarcoidosis attacked my sinuses. This resulted in three sinus surgeries and the loss of two of my senses; taste and smell. Later it has attacked my blood, bones, skin and eyes in no chronological order. Now, after an 11 day stint in the hospital after being admitted with congested heart failure and pneumonia, my blood pressures are hard to regulate. Went in with the first reading of 200/115. Scary as you know what. I was also told the my potassium and magnesium levels were dangerously depleted and I had to be admitted if I didn’t want to die. My family took it very hard and stayed with me after being admitted until 3 a.m. We cried, prayed and strategized because that’s what we do. I absolutely love my husband and children. So now what’s being said is that they believe that the Sarcoidosis is attacking my heart which is causing the irregularities in my blood pressures. I am on so many different meds for my blood pressure. One in particular, Hydralazine, causes severe headaches sometimes after I take it. So this brings me back to the title, after the scare of congested heart failure I am fighting for my life with a vengeance now. I want to live a long healthy life. My goal is to eventually get off of these meds and find a way to build my lungs back up to wean off of the continuous Oxygen. So all I ask is for prayers for a healthy recovery please.
As always, peace and blessings to you all. Until next time be healthy, happy and please support Sarcoidosis Awareness by donating via http://stopsarcoidosis.org.
Please take a minute out of your day and call your State Senators and Congressman/Congresswomen to vote against Paul Ryan. We cannot go back to less than optimal care for our chronic illnesses. http://mobile.reuters.com/article/idUSKCN0XP00C
Woke up this morning after a very sleepless night feeling heavy. Muscle and joint pain with spasms caused me to require assistance from my husband to get dressed and downstairs. When asked what was going through my head I stated that I felt as a failure to be a mother, failure to be a wife, failure as a Sarcoidosis Advocate and now failure as an Acti-Lab Ambassador. Why, because my health is deterring me from living as I ought to be. My 50th birthday is this upcoming Friday, June 3rd. Where I wanted to be and where I am now is not as I expected. The problem is should I accept it or should I change it.
Two new masses found on my lungs, a breast cancer scare, Cardiac Sarcoidosis issues, NeuroSarcoidosis issues, Fibromyalgia flare, new doctor, multiple testing, new medication changes, medical insurance issues, etc… This is just been the last three months. This could make a person very stressed and it has. I watch my husband working himself to death just trying to make ends meet. He never asks for help and he never complains, but you can feel his spirit shift. I am scared for him.
The only way that I could help without sitting on the corner with a cup in my hand was to find something that I could do when I could do it. Something that is not so stressful that I would get overwhelmed. So I started my own business and it is, not for not trying my damnedest, getting off to a slow start. I thought that of those that are most important to me, would have been my first clients. Not happening. No, I cannot work in a normal setting due to my illness and knowing this I thought that support would have come fast and everyone would be happy that I am trying and that something has motivated me to strive to continue to fight. I understand that everyone has financial problems and I can relate, which I why I jumped into this venture. There is even opportunities for those that can to join me with trying to make some extra income.
Why am I stressing? I truly don’t know because I trust that God has a plan for me. Sorry for venting.