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!!! 

This is strange.......

So the insomnia has returned. Hoping it doesn't stick around. Then I hurt all night. Every time I laid on my left side, it felt like someone was stabbing a stick through my spine. Hoping treatment will resolve that.

So we FINALLY got the lab results we've been waiting on. They thought I had TB (or what appeared to be TB) so they've been treating me for it. I stopped taking the pills last week cause they were making me sick. The nurse called and said I have Avium (which mimics TB). Then said I'd have to see a regular doctor for that and would call me back. I got online and started reading about this Avium and what I was reading scared me to death. I called Jeff at work and told him that we WILL NOT accept this answer. So I called the nurse back and said hey from what I'm reading this is bad news. She said oh no it's not. It's an easily curable virus. She said it's not contagious and my pulmonary doctor can treat me. I told her about the sarcoid and how the symptoms for sarc and this Avium were so much alike. She said yeah but the xrays of my lungs makes her believe there is more going on. She said I probably do have the sarcoid as well as the Avium. So Monday I see my pulmonary doctor and we should have some results. 

I do believe I will be healed of whatever I have...whether it be sarcoid or avium or whatever. I did have a burst of energy today and shampooed some carpets. I can not wait to have that all the time!!!!

Some good days.....

I've had 2 good days now!! I'm so happy!! I even got out with Jeff and the kids tonight to the fair. I didn't last long though. I got real sick a couple of days ago and stopped taking the meds the nurse had brought me. They still don't have the test results back but she said she doesn't think I have what they thought I had. 

I still don't have a lot of energy to do much. I have been reading about people that have started their treatment and how much better they feel!!! I am so ready for that day. I did tell Jeff we do have to keep in mind that there is that small possibility I may never be back to my old self and will have to accommodate for that. 

I'm so very thankful for such a wonderful husband!! He's been there every step and has done so much!! He's learning to cook and enjoying it!!! I've been truly blessed with such a wonderful family!!!

Frustrations....

I am so frustrated, there are no words to describe what I feel. I went to the surgeon yesterday....wasn't the one that did my procedure, but the one I saw the other day. He asked how I was feeling. I told him ok except for the horrible pressure in my chest. He said that's from the sarcoid and they are sure that's what I have....no doubt. My throat/neck area is so tender. 

I called the nurse today to find out the test results we are waiting on from the state lab. She said nothing has been reported. I told her I want answers tomorrow. I'm tired of playing this stupid game. Tomorrow I'm going to make a call to my pulmonary doctor, who started all this stuff in the recovery room. I want answers now.

On a happier note, I have been in contact with a lady from the Foundation of Sarcoidosis Research who helps people start support groups in their area. We are working on starting a sarcoid group in our area!! 

I did get out today. Probably not such a great idea that I drove.....almost went through the bank!!! But we made it home ok!! 

When people don't take you seriously....

I'm on a web-site specifically for people with sarcoid. I posted a discussion last nite titled "When people don't take you seriously." I don't feel people take me seriously when I say I'm sick or I don't feel good. People just don't get it. 

I wanted to share some of the replies that I've received.

"Well, they do say that people with sarcoidosis are the best looking sick people! I don't normally refer to myself as a good looking person, but for as sick as I feel, I definitely think I look darn good! I wish I had better advice, or wisdom to share...but, that's all I have for you. I wish people could somehow understand, but I don't think it will happen. I mean, before I got this I would never have understood the seriousness of it if I saw someone with sarc. Cancer patients look sick. Parkinsons patients look sick. Sick people normally look sick. But we don't, it's hard for people to comprehend."

"Keep them up for two days, tying them up in the sun for the duration of the second day. Shoot them all over with a bb gun to simulate granulomas displacing something they might feel is important to them.
If you have pulm sarc get a small diameter straw and ask them to breathe through it while on a treadmill for ten minutes and realize that's how you feel all day.
If you have neuro sarc get thirty lb. weights and tie one to each of their feet. Kick them randomly and in random places as they walk.
After you finally let them sleep, wake them in the middle of the night and insist they solve mathematical word problems. Then ask them if they want to go out shopping at the all night store. If they don't demand to know why not then immediately put your fingers in your ears and say,'LA LA LA LA LA'.
All this may come close to understanding. It might be more effective if you did it every day or even better, on random days so they have no idea when it will hit them.
Another approach when someone says, 'But you look so well', might be to say,' And you look so smart...'.
On the other hand I'd love it if people stopped saying,'I feel like that too', when they're 80 and I'm 45!"

It seems the only people in my life that really "get it" are the ones that are around me on a regular basis or that also have an illness themselves. If you are one of those that don't "get it", please don't tell me that I'm blowing it out of proportion or making something bigger than it really is, until you walk a day in my shoes.