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!!! 

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.

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!!!

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.

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.

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 up....my hope endures!!

Woke up feeling really bad....

This morning I woke up feeling really bad. Jeff went into work late and was almost there when I text him that I was having bad chills, a fever, my chest hurt really bad and was having a hard time breathing. He turned around and came home......but made a pit stop at dads for some oxygen. The chills and fever finally went away, but the chest pain is still there. I have been feeling really good for the last week. Last nite I took the dogs on a short walk and halfway home, I started feeling the pressure on my chest. I've been fighting REALLY bad headaches at night for about a week. 

I've been doing some reading on a web-site specifically about what I "might" have. Here is the link if you would like to read about it. http://www.stopsarcoidosis.org/  My doctor told me they can't give me anything for the pain, but from what I've been reading there are several medications that help relieve the pain. I know I won't be entirely pain free unless the Lord heals me, but something would help!!!! 

I go back to the doctor next Wednesday. Hoping we get some answers then.

Another day.....

The last few days have been up and down. 

Yesterday I felt horrible all day. I was finally getting some rest.....but last nite was horrible. I actually cried myself to sleep last nite. It's been a LONG time since I've done that. 

This morning I didn't want to get out of bed. I'm finding it harder and harder to do. I know I'm fighting depression. I felt pretty good all day. The kids and I went to the store....people probably think I'm crazy for riding around in the electric buggies, but I know if I don't, I won't be worth anything by the time I get out of the store.

The mood swings seem to be getting worse...and I know a lot of it has to do with the disease and not feeling good. Poor Jeff puts up with a lot, but he's right there with me!! When I feel the moods coming on, I try to find something to occupy my mind so I don't snap at anyone. I've been fighting headaches for the last two days. They come and go. Nothing seems to help anything anymore.

I miss being able to do things I use to do. I just don't have the energy. I keep thinking about what the nurse told me the other day.....once we get a diagnosis and I start treatment, I will feel like a new person. I'm looking forward to that day!!!

The beginning..

I wanted to start blogging about what's been going on with my health for two reasons:

1. It's a release for me to share how I'm feeling and what's going on with my health;
2. To help the one's close to me understand what is going on.

I'll start at the beginning.....always a good place to start!! The day after Thanksgiving 2008, I was sitting at work and had been feeling horrible pain in my chest. It felt like a bad case of bronchitis. After sitting there for several hours, I decided to go to the ER. After several hours and numerous tests, the doctor came in and said "we've opened a can of worms. I can't tell you anything except that we are admitting you." I said excuse me, you've got to tell me what is going on. She explained that from my x-rays, the lymph nodes in the center cavity of my chest were extremely enlarged. She said she'd never seen anything like it. So they admitted me.....that following Monday, I underwent a mediastinoscopy (a procedure where they cut a small incision at the base of your throat and go into the center cavity of your chest). They took samples of the lymph nodes there. After several weeks, they said they thought I had Sarcoidosis (an auto-immune disease which can affect several organs of the body). Two days before Christmas, I went back to the ER with the same pains. They decided to start me on the treatment for sarcoid....which is high doses of steriods. Last minute they see some abnormal test results which changed their minds. They decided to start treating me for histoplasmosis (a fungal disease which is contracted by contact with bird or bat poop)..... I underwent 6 months of treatment for that...with a very potent anti-fungal medicine that made me very sick. My chest pain basically went away.

Now fast-forward a year and a half later......about 3 months ago, I started feeling bad again. Let me try to describe how I "feel bad." Imagine your chest in a clasp that is so tight that you want to stop breathing so it won't hurt.....fatigue....can't sleep...moody...my whole body aches...I feel like I'm going to burn up from the inside out. Yeah that should about sum it up! Anyways, I finally convinced myself to go back to the doctor (it helped that they called to remind me of my 6 month follow-up!!). He decided that we needed to do a bronchoscopy (where they go in to your lungs with a microscope). After this procedure, he said he still wasn't sure what we were dealing with.

I started doing my own research. I knew he had "thought" it might be sarcoid, so I researched that. Then I knew he had treated me for histo, so I researched that. Then I cross-referenced them. I learned a lot about both diseases. One thing that I learned was that the symptoms for both are so much alike, they have to do the whole elimination process to find the sarcoid. I felt like I was alone in the world, dealing with this. No matter how I tried to explain how I felt to anyone, including my husband, I still felt alone. I started reading peoples blogs that have been diagnosed with sarcoid, and sat in amazement......I sat here one nite in tears thinking "these people are describing how I feel to a T." I found out I'm not alone.

Today, I went back to the doctor cause my pain has got worse. I can't sleep cause it hurts to lay down. My regular doctor was on vacation, so I saw his nurse practitioner. She asked me how I was feeling. I told her how I hurt, how I can't sleep, how I'm so miserable. She said she totally understood and that they honestly believe I have sarcoid, but still have to rule out the histo.

Let me explain then I'll get back to the rest of my doctor visit. As I mentioned before, the treatment for sarcoid is high doses of steroids. If you treat someone for sarcoid that has histo, you can literally kill them. So if there is any histo in my body, we have to treat that first.

Ok, back to my story.....so in the mean time, I asked what can she give me for the pain. The doctor gave me Darvocet before and it didn't do anything. She said she wasn't surprised. She said there is NOTHING...and I repeat..NOTHING they can give me for the pain. The pain is due to the swelling of the lymph nodes in my chest and until we can shrink them, I will have the pain. She said the only thing I can do is try putting heat on my chest and sleep sitting up. I have had to literally make myself pass out in exhaustion to get sleep. I asked her what I can do for the fatigue...if there's vitamins or herbs or anything natural I can do to help it. She shook her head and said no, it's all part of it. So we left the doctors office today with some clarification on what we are looking at. They are saying that if the cultures from my bronchoscopy come back negative, I am looking at having a repeat mediastinoscopy in the very near future.

So there it is in a nutshell. I hope that this is not taken as a cry for attention or a plea for pity. I want the ones I love to understand what I'm going through. I spend numerous hours in prayer over this situation. Every time I start hurting I tell the Lord I don't understand but I know He will get me through it. He will give me the strength.