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.

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’.

Exciting news.....

I was out grocery shopping today and my cell phone rings. It was my doctor. He said that he had sent my case to a Dr. Iseman at the National Jewish Hospital in Denver for review as well as some questions. Dr. Iseman is a specialist in pulmonary and respiratory diseases. Dr. Iseman said that I have the typical sarcoidosis case. He said that the MAI is nothing to be concerned about. He said considering where I live, it does not surprise him that it has shown up. He said we are doing the treatment right and to continue to watch for any other signs of MAI. 

My doctor asked how I was feeling, and I told him not any better. He said tomorrow when I come in, they are going to double the dosage of the steroids. I asked if the anxiety and horrible fatigue is part of it, and he said it is, and we can discuss giving me something for it!!! 

As much as I've complained about my doctor, I have to say that I am quite impressed with how he's going out of his way to find outside help with my case. I feel like such a weight has been lifted. I don't feel like anyone thinks I'm "nuts" now (even though I know I am...but it's the medicines fault!)!! I am so happy to have received this news today and see how things will go from here!!

It only took 2 years.....

You never know how much of a relief it is to hear you finally have a diagnosis until you've heard those words and see it on paper. I FINALLY got that today!! I am 2 weeks short of my 2 year anniversary of dealing with this horrid disease....SARCOIDOSIS. Last few weeks I haven't been feeling so good, so finally decided I better make an appointment at my doctor. We decided it's time to try something so we had to make a decision as to whether I just try the steroid and watch for more symptoms of MAI, or take the steroid AND the meds for MAI. I told him I would rather try just the steroid and watch. So I have started the treatment and watching!!

My doctor was telling me about another patient he has that has the EXACT same symptoms I have and went through a trial study and have found that they have been able to reduce his steroids and he's started using Lipitor as the anti-inflammatory. I've been doing lots of reading and found there are more medications they are trying and are working to help people maintain this disease. At this point, there is no cure. Not many people have heard of sarcoidosis. Now that I have a confirmed diagnosis, I am praying about starting a support group in the area. I've had several people tell me they would love for that to happen. So I'm praying that after the first of the year, I can help get that started.

Ever seen a confused doctor??

If you answered no, you should have been with us today!! The doctor went through his usual questions and when he asked how I was feeling, I told him I feel great except I still get a little tired, but NOTHING like before. He said all cultures from my last procedure is negative except the MAI. He said he is still convinced I have sarcoid (not sure if that is a confirmed diagnosis or not). He said we have 3 options.....1) I can start treatment for MAI, 2) I can start treatment for sarcoid or 3) I can wait and see what happens. I told him I'd rather wait and see what happens. I mean why treat something that isn't showing symptoms. I told Jeff it's like treating a broke foot that's not broke. If it's not broke, don't fix it. So......he made sure I had my flu shot and said come back in 4 months and do a breathing test and another x-ray to see if the lymph nodes have shrunk. He said of course if I start feeling bad or anything changes in the mean time, definitely call him.

After the doctor walked out, I laughed and told Jeff "I enjoyed watching the doctor squirm with confusion!!" 

Best news yet.....

I went back to the doctor today (well the nurse practitioner). She scolded me for not going with the antibiotics for MAI but then said she was just teasing!! We discussed why I didn't want to do the treatment for that. She agreed when I told her I felt it would be a "trial" and I'm not about to be a guinea pig. She said that the MAI and Sarcoid have some of the same symptoms such as the enlarged lymph nodes so at this point they aren't sure which one I have. She said since I am not having bad symptoms of the MAI like fever, she is ok with letting me not take the antibiotics. I told her my concern that up until this last episode, all my chest x-rays have been clear and now all of a sudden my lungs are "icky". She said that is why they think it's from a lab contaminate. Jeff asked what all the lab results are showing. She said only ONE culture is showing the MAI. Nothing is showing from the last surgery!!! She said if it is Sarcoid, it could be clearing itself out, which it does sometimes. (That's what it did last time) She said whatever I have, looks as if it's clearing itself out!! 

The Lord hasn't failed us yet!!! He is still healing me!!! I believe one day, I will be totally healed!!

Not accepting the answers....

I went back to the doctor today. He had called me last week after I had posted my last blog. He had told me the same thing the nurse had said. So today when I saw him, he told me that the cultures from the bronchoscopy had grown MAI (mycobacterium avium intracellulare) which mimics TB. But the cultures from the mediastinoscopy haven't grown anything, so he was a little confused. He said that MAI does not cause enlarged lymph nodes like I have, so he still believes I have sarcoid on top of this. He kept saying he wasn't positive I have the MAI, but wanted to start me on the medication for it, which consists of 3 medicines that he said will be very expensive and could have very bad side affects such as liver damage and damage to my eyes. I would also have to be monitored closely by an opthamologist. He said he wanted me to try this for 2 weeks and then we might start the steroids for the sarcoid or we may discontinue the medicine and just do the steroids. So I told Jeff after we left the doctors office, that if the medicine is real expensive then I wasn't going to do that. There are too many risks associated with going that way when he's not even positive that's what  I have. 

I called the pharmacy to find out how much the medicine was.......for the 3 medicines, it was going to be $300!! So I've left a message for the doctor that we can't afford the medicine.

I told Jeff the reason he's confused and things aren't showing up is because the Lord is healing me. I've been praying that my confirmation that He is healing me would be that the doctor would tell us he is confused, and he is!!!