Monday, August 30, 2010

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!!! 

Tuesday, August 24, 2010

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!!!!

Saturday, August 21, 2010

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!!!

Wednesday, August 18, 2010


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 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!! 

Monday, August 16, 2010

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.

Friday, August 13, 2010

What else can go wrong??

Surgery went good on Wednesday. No complications from it. I had a hard time coming out of it though. As we were sitting in recovery, my pulmonary doctor called up and said he wanted to come see us. He came in and said something finally grew on my cultures from the bronchoscopy. I'm not going to discuss exactly what they are saying it is because I'm claiming faith that it's not it. But at this point, they started putting me in quarantine at the hospital. They were going to move me and Jeff said no you're not, I'm taking her home. So I think we left AMA!! We get home and the health dept is calling and saying I'm not allowed to leave the house until their nurse comes to see me. She came out last nite, did MORE blood work. We are waiting on the state health department to confirm my diagnosis.....this is ON TOP of the sarcoid. So in the mean time, I am home-bound. I'm not allowed to go out in public, for at least a week. This means I will miss Becca's school open house on Monday and possibly first day of school.

Jeff is doing awesome!! I couldn't ask for a better husband!! He's been there every minute for me and taking care of the kids. He's a little overwhelmed!!! 

I want to express a huge thank you to my sister for helping us with the kids!! She's going to take them to finish their school shopping that I can't do. She took off work on Wednesday to help take care of the kids. I want to say a great big thank you to my dear friend Jamie for coming to the hospital and sitting with Jeff during my surgery. You will never know what that meant to us!! Thank you for bringing us lunch. You both rock in our books!!!

Monday, August 9, 2010

Public awareness......Where is it?

As I've been doing more research on Sarcoid, it makes me wonder where is all the publicity about it?? Did you know that comedian Bernie Mac died due to complications with sarcoid? Football star Reggie White died from sarcoid...Model Karen Duffy suffers from sarcoid?? But where is the publicity about it? Every time I see a commercial for cancer or any other disease, I wonder what will it take to get publicity about this as well.

I've looked for a sarcoid support group in our area, and there isn't one, but yet I've found so many people in our area that have this horrible disease.

Guess it's time to start making the public aware........all it takes is one person.

Thursday, August 5, 2010

Missing the GOOD days....

I'm soooo tired... I'm tired of being tired. It takes so much to do anything. JT and I went to the store today, then finally decided to cook dinner. (Guess I'm gonna have to teach Jeff how to cook cuz eating out every nite is killing us!!) Didn't make anything spectacular but by the time I was done eating, I felt like I had been running a marathon. I hurt so bad, so tired and the fatigue is so bad I can hardly stand myself. Jeff kept asking me what was wrong but it's so hard to explain. I just keep saying I don't feel good. I just want to feel good again. I know I will but that day doesn't seem to come quick enough.

Wednesday, August 4, 2010

Looks like surgery again....

Went back to the doctor this morning. He said the cultures didn't grow anything. I asked if that was a good or bad thing. He said he wished they had grown something so we would have a definite answer. But since everything came back normal, we have 3 options. 
1. Wait and see what happens,
2. Do the mediatinoscopy again and try to get more samples, or
3. Go ahead and start the high doses of steriods.

He said he is pretty positive I have sacroid, but there is still that slight chance I might still have a touch of histoplasmosis. If I do still have some histo, and we start steroids, I would have to go in every week for lab and x-rays, and be monitored very closely. He said the risks are very high on going ahead with the steriods. I asked him what he thought we should do. He said the surgery. I asked Jeff what he thought and he agreed with the doctor. I told him as much as I hate to do it, let's go ahead. So on Tuesday, I see the surgeon again and possibly surgery on Wednesday. It will be outpatient. He said there is also the option to try another round of the meds to treat histo. I told him no because it made me so sick before and didn't do much good. I told him I don't want to treat something that isn't showing up. He said since I'm not doing too good, we need to get moving on this. 

Last two days have been bad. I just don't feel good. It's an effort to hold my head up at times. But I keep looking hope endures!!