Tuesday, March 15, 2011

The latest....

I haven't written in a while because I've had more bad days than good. In fact, I don't remember the last "good" day I've had. My health has seemed to keep deteriorating. My last visit to the pulmonary doctor didn't go so well. My next visit, which will be the first part of April, will consist of another CT scan and discussing changing my treatment. I'm currently on 30mg of Prednisone a day and it's not seeming to work. So the next step is to start treatments of Methotrexate. Once I started reading about it, I got scared. This is a drug used to treat cancer patients....basically chemotherapy. I've done a LOT of reading about it including blogs from people that have Sarcoid and take it. It does have some very scary side affects. 

Since I wrote last, I have also found an awesome primary care doctor!! She is really a nurse practitioner but knows everything an MD knows. She even knows about Sarcoid!!! I was so happy when I found that out that I was in tears!! She's been awesome!! I went to see her yesterday as my blood pressure was really high all weekend. She put me on Lisinopril 10mg for my blood pressure. I also discussed with her about the Methotrexate (which is also referred to as MTX). She highly recommended it if the Prednisone isn't working. She said the first few treatments will be extremely rough and I will feel as though I'm going backwards instead of forward, but she said most patients feel so much better. (I'm skeptical because they told me the same thing about the Prednisone.) My anxiety got so bad that they have doubled my anxiety meds, which seems to be helping!! I also have an extra anxiety med for when I feel I need that extra help.

I've also started the process to see if I can get disability. The visit to the doctor yesterday confirmed that I need to start this process. She said if they are discussing MTX, then that means my "quality of life" is deteriorating. I told her most days I have a hard time doing the simplest tasks. I know this process will not happen over night or even in the next few months, but I feel so much better knowing it's started.

Monday, February 21, 2011

I'm doing "FINE"....

I haven't blogged in a while. But I saw this that was written by a fellow "sarkie" and she hit it right on the nose.

Many Sarcoidosis sufferers are only too aware of the similarities between our condition and that of the cancerous condition called Lymphoma. Both present with similar symptoms like fatigue, muscle aches and pains, enlarged lymph nodes, loss of weight and loss of energy. In many cases it is not until a biopsy of the lymph nodes is taken that the doctor can make the diagnosis. We, in the mean time, along with our family and friends, are faced with the possibility of having the “Big C”.
When Sarcoidosis is diagnosed, it brings with it a confusing sense of relief with the attitude of… “Ah sure it could have been worse…”
When people ask me how I am, I feel… ”well I better not complain because at least its not cancer…” There are so few people who actually know about the seriousness of Sarcoidosis and the effect it can have on the different organs involved and the complications it brings to a sufferers life that sometimes its just easier to answer…“Yeah, I'm doing Fine “
Ever wondered what “Fine” means to someone with Sarcoidosis??
Well for me it goes something like this…

F” represents the Fatigue I suffer daily without Failing, the Fight I must put up to muster the energy to carry out normal daily tasks that we all take for granted, the Forty winks I have to take to keep me going if I need to do anything ‘exciting’ like going to do the weekly shopping.
It stands for the Fake smile I put on when at times I just want to cry with Frustration,
For the Faulty Immune System I have that is causing all this Frenzy. And this Foreign life I am now living, Fuming that my Former Life is on hold…

I” represents the Imbalance that’s now in my life because of the Illness, Inhalers I must take just to help with the shortness of breath, the Impact it has on my Identity, my Independence altering depending on the degree of the Muscle and Joint pains which varies from day to day.
Imagine the Idea of an Incurable Illness, treated by Drugs that leave you Immunosuppressed, which in turn renders you Isolated, Introduces you to Insomnia, leaving you Irritable and feeling like you are going Insane??

N” represents the Nuisance things I must do, which are now Necessary for me to be “Normal”
the Negative Nonsense thoughts that leave me Nauseated and Numb

E” represents the Enormity that this illness has had on my life, and the Effect of this Emotional roller coaster, the Expectation of Energy from the treatment I'm on which quickly Evaporates leaving me Exhausted again, the Emphasis on Eye Care, done in Earnest.
It stands for the Employment and Education which I Enjoyed and had to postpone, leaving me Empty and Envious. I wish I could Escape the Expectations of those who don’t understand the condition. Sometimes my own Expectations leave me feeling like I want to Explode.
Even though I know the condition won't last an Eternity; Sometimes I already feel ‘Enough is Enough’..

So next time you ask how I am doing and I answer “FINE”, you may have a better understanding of what it really means to me…
Its important not to forget though, that fortunately “F” also stands for the Family and Friends that are there by my side, keeping the fun things going, doing endless favors for me, considering my fears, helping me to keep the faith and look forward to the future, helping me to stay focused that someday, sooner or later, everything really will work out just ’Fine’.