September 2005 - I Gave Up

Not much has been happening the last couple of months. One thing I have found about Dermatomyositis is that the disease will cause a lot of other medical problems. On top of fighting the disease there are a handful of other medical conditions that I had to deal with.
There has still been a lot of pain, I still have bad stomach cramps, so I was not eating. This month was my darkest month, I GAVE UP.
My weight was below 120. I would sit in a chair and watch TV, or sleep all day. I was slowly dying, and I believe that I would not be writing this if Kim did not fight for me.
One day I was sitting on my chair, depressed, ready to die. Kim came to me with tears in her eyes, and told me that she knew I did not want to be here, but please fight for her and Tyler.
She saved my life. That day I started fighting again.

9/9/05 - Went to the hospital as I had a bad scab on my left elbow. Dr. took a culture of the infection, it was a BAD staff infection. The infection is in my system, and is making me sick.

If you have ever had a staff infection, it is one of the most painful in the healing process. The infection had eaten about a 1" diameter around the opening. I had to insert a swab deep into the infection to clean it out, then impact (Shove) gauze into the infection. VERY PAINFUL!

9/20/05 - I have had blood in my stools for some time now. I did not think much of it, until today. I stood up and almost passed out. I called Kim, she took me to the hospital, they took a sample and could not believe how anemic I was. The Drs. told me that my blood count was the lowest they have seen. They rushed me to the Seattle hospital by ambulance.
Once I was there, they put 5 bags of blood into me. I had a colonospy the next day. I was in the hospital for 3 days. I felt pretty good after the 5 bags of new blood..... hmmmm maybe I should do that all the time? :)

I have found with Dermatomyositis that the disease will take it course. There is not much you can do, but to hang. When the Dermatomyositis has finished, you can start to wage war on the disease. This was the lowest point of the disease, from this month, things started to improve. I was not out of the woods yet, but in the next couple of months, I was starting to win, not the disease.

June 2005 - Feeding Tube

I have one of the worse cases of Dermatomyositis that the Drs. have seen. Dermatomyositis can effect your ability to swallow food. From the onset of Dermatomyositis the muscles that allowed me to swallow have been getting worse and worse. I could eat every little (Kim would have to put the meals in to food processors to make baby food), I could barley swallow water without choking, and at night I could not swallow my spit. I had to have a cup by my bed to spit out my spit or I would choke on it (Yes, it was kinda gross).

Something had to be done. My weight was dropping very fast (About 120 lbs right now!) and my strength was nothing. We had spoken to the Drs. about a feeding tube, but, as a typical guy, I did not want one. The Drs. told me that if I did not take the feeding tube, I would die.

I had a GI feeding tube. The Drs. inserted a tube from the outside of my belly, that went into the stomach. There was 12" tube that hung from my belly, I had to tuck the tube in my pants. When I ate, I would take liquid food, pour it into a funnel, into the tube, that went into my stomach. NOT FUN, but it was life or death. This was my only nourishment and liquids that I would take in. I cannot tell you how much I missed eating. You find that eating and meals are enjoyment, and entertainment. This was very discouraging for me.

6/15/2005 - First Rituxan infusion

6/22/2005 - Second Rituxan infusion

6/29/2005 - Third Rituxan infusion

7/6/2005 - Last Rituxan infusion

Rixuxan is taken by IV. It is taken 4 times, in four weeks. The only side effects that I had; I felt like I had the flu. I did feel that Rituxan worked, I felt the effects in about 6 weeks time. The first time was the best reaction, the other ones I felt did not work as well.

6/30/2005 - Feeding tube put it.

April 2005 - Is This Life?

After I had the whirlwind month in March, things started to settle down again. It was now a showdown, me against Dermatomyositis. Who would win?
I can't say things got better, but I know that I was not at my darkest hour yet.
4/15/2005 - Physical Therapy
4/22/2005 - Physical Therapy
4/25/2005 - Dr. Appt. We discussed an new infusion treatment with the drug Rituxan. We agreed and started the process.
At this point, for some reason I had TERRIBLE stomach upset. The pain was so much that it would put me into a fetal position. We are not sure why to this day, why the upset. But, I have found that once you have a sickness, a lot of things will go wrong for no reason at all.
May 2005 - No changes

March 2005 - Hope

Remember when I said that the right Dr. will make all the difference in the world? It does. We found another Dr. (Neurologist) and hospital (University of Washington) and things started to happen. I really feel that this was a huge turning point in my life and my Dermatomyositis disease. For once I felt like a person and not just another number. They really cared about me and making me better. We found this new Dr. and hospital through MDA.

This is VERY IMPORTANT if you have Dermatomyositis or a myositis type disease. The disease you have is under the MDA umbrella. Where ever you live, you have a local chapter in your area. Get ahold of your chapter, and tell them what you have. There is funding available, and support.

When we called our Seattle chapter a representative came to meet us. She gave us phone numbers, a wheelchair, a elevated toilet seat (I could finally get off the toilet now), and crutches to walk with. They also had connections with support groups, and when they were meeting. They were a God send! Thank you MDA!

3/2/2005 - First meeting with new Dr. Learn a lot about Dermatomyositis. Upped my Predisone to 100 mgs.

3/3/2005 - Had EMG test. Not a fun test, but it tells a lot about your muscle function. They stick a needle in your muscles, then tell you to flex your muscles, then they move the dumb thing around. Ouch! Also had a CT scan of my chest to see how my heart was.

3/4/2005 - Had lost ability to walk. I had to be pushed around in a wheelchair. I HATED IT!!

3/5/2005 - Could not wear shoes as the edema was so bad in my feet.

3/6/2005 - We were on our way to church, and I tripped and fell to the ground. I had a fear of falling, you see when I fall, I could not get myself up or turn myself over, I was dead weight. So when I fell, Kim and Tyler my son had to drag my lifeless body to the edge of our stairs, put my feet over the stairs, and push my torso up so I was in a sitting position, from here they could get me to stand. This was very scary for all of us.

3/7/2005 - Results from CT scan - Thickening around my heart, needed to get an electrocardiogram for my heart.

3/8/2005 - Test was OK. My heart was fine. Thank you Jesus!

3/9/2005 - Have more strength in legs - Predisone is doing it's job.

3/14/2005 - Bad weekend. Very depressed.

3/16/2005 - Kim and I started to stretch my muscles. With the lack of movement my muscles they were losing the flexability.

3/18/2005 - Physical therapy. I had to re-learn how to do some basics. Putting on socks, underwear, and getting out of bed. These seem like simple things, but I could no longer do them, and they did have little secrets to help you.

3/22/2005 - Had ear tube put into left ear. Due to the lack of swallowing, I developed water in my inner ear.

3/28/2005 - Had another muscle biospy in my right bicep. Again it came up negative. :(

As you can see a lot started to happen. The right Dr. can and does make things happen. Thank you Dr. D!

Another suggestion. Sitting at home was very depressing. I would sit and watch TV, and TV would show me all the things I was not. I saw people running, I could not. I saw people eating, I could not, everything that I watched depressed me. Especially that commercial for the powered wheelchair. It was like the enemy was saying..... this is going to be YOU.

Find something to keep you productive. Read, study, play video games, Internet, blogging, anything to keep you mind off the disease.

January 2005 - Crashing

From this point of my life it is battle. The Drs. and I are trying to stop Dermatomyositis from killing me, my immune system has turn on me, and is slowly taking everything away from me that I love.

1/6/2005 - IVIG infusions. As I said I feel that they did not do anything, but we are giving it a try.

2/7/2005 - IVIG infusions.

2/2/2005 - Writings in my journal can be barely read as my motor skills are declining. When is this going to end??

2/14/2005 - Started Methotrexate. I had a bad reaction to this drug. Terrible edema especially in my hand and my feet, so much that is made walking so much harder.

December 2004 - ANGER

I became very anger at this point of the disease. I became mad at God, and expressed it to Him. I never stopped loving Him or acknowledged the fact that He is almighty God. We have a very personal relationship, and in a good relationship you need to be honest and open with the other person or God. I could not understand the pain, or where He was taking me. I thought that I was doing what He wanted (Being a Pastor), I mean why would He not want me to be a pastor???

In my journal my handwriting is getting bad. I was losing my ability to write. Words to describe me in the journal; zombie, blob, not a man, hunk of flesh, pooh, worthless, and failure.

12/2/2004 - Had 3 days of IVIG (Globulin) This made me VERY sick. Let me stop for a second. There are many drugs out there to treat Dermatomyositis and other myositis diseases. What works for me, may not work for you. If you have Dermatomyositis I would talk to your Dr. about the medication, and look at the side effects. A lot of these drugs come with some serious side effects. I felt the the IVIG did not do much, but make me sick.

12/20/2004 - Journal Log: I GIVE UP - I QUIT - I AM DONE!

12/21/2004 - Tried to go Christmas shopping at Target. Left very discouraged and depressed.

12/22/2004 - Starting not to be able to hold up my neck.

12/23/2004 - Took muscle enzymes test. My count was down to 2,000.

12/29/2004 - My emotions came pouring out. I lost it. A suggestion: Get into a support group, and articulate your feelings to others.

November 2004 - Downhill FAST

From this point the disease; Dermatomyositis progressed very quickly. It was eating away at my body and my life.

11/2004 - My first visit with the rheumatologist. After speaking to him about what I have, I told the Dr. "Great, just give me a pill, and I will be on my way back home." Little did I know there was no cure for Dermatomyositis. He did put me on 60 mgs of Prednisone. Prednisone is a love/hate drug that we will talk about in the future.

11/10/2004 - Had my first of many CAT scans. When the scan came back the Dr. commented that my leg muscles looked that of an 80 year old man.

11/21/2004 - Had a muscle biopsy. The Drs. wanted to see if they could view the disease. They took a muscle biopsy from my left leg. Unfortunately the biopsy showed them nothing.

I was feeling very sick, in fact in my journal repeated the word "sick" three times. This was the worse pain that I have ever felt in my life, it would not go away. On a positive note, the amount of people that were gathered and started to pray for me was neat. I could already see that through this sickness, God was being glorified.

11/24/2004 - I did a Bible Study in the morning, then worked 12 hours at work; Family Christian Stores. When I came home it was the worse pain I have felt. On the drive home, I just cried in my car, crawled up the stairs, and curled up in Kim's arms. Any little movement took ever bit of energy that I had, I was a snap away from being in a wheelchair.

I was very worried for Kim. I was scared, and I could see that she was scared. It was stressful time, as a man, I wanted to be there for her, but I was fighting for my life.

11/27/2004 - Lost my job. I could no longer perform the duties as manager, I took a short term leave, that turned into a long term leave, that turned into permanent leave. I am still in a lot of pain, taking tons of pain medication. At this point I because very discouraged and depressed.

11/29/2004 - I was anointed by my pastor and the elders of the church. They laid hands on me and prayed over me. I left the pastors program.

During this time my condition became very bad, very quickly.

• I could not get up from the toilet. I did not have the leg strength. It is a very scary feeling knowing that if you are alone, and if you have to #2, you cannot get up.
• I could barley walk.
• I was losing my ability to speak.
• I was losing my ability to swallow.
• I could not get myself out of bed, or turn over in bed.
• I could not walk upstairs.
• I could not drive.

You get the picture. I was slowly becoming wheelchair bound, not able to move a muscle in my body. Kim would get my up in the morning, she would sit me in a chair, and I would sit until she came home. Our bathrooms were upstairs, so I had pee in a cup, and hoped that I would not have to do a #2. :)

October 2004 - I have What?!?!?

10/10/2004 - For you to understand my journey, you must know that I am on the verge on starting my pastors ordination. I was never closer at this point in my life to God. I knew what I wanted to do, and I thought that I had it all planned out. Well...... God had different plans, not bad plans, just different plans.

10/13/2004 - Started pastors classes.

10/17/2004 - Last night I had a race with my son. I woke up with very sore hips. I thought that it was just because I getting older, and I was trying to prove that the "old man" still had it in him. I did not think much of it, as I have weight lifted for many years. (I won Mr. Idaho Bodybuilding)

10/25/2004 - Muscle were still VERY sore. The soreness and pain was starting to move to other body areas. I also noticed that I had a little rash coming on. At this point I thought that I had a flu or some kind of a bug. My weight was 210lbs. I say this because at the lowest point of the disease I weighed in under 120 lbs.

10/29/2004 - Pain is getting VERY bad, my body just aches. It was strange, I did not feel sick (Flu like) but I just HURT. The pain moved from my hips, to my back, chest, shoulders, then to my legs. I found that Dermatomyositis moves around and attacks different muscle groups. Dermatomyositis attacks symmetrically ie. both hips are sore, both shoulders are sore. Dermatomyositis usually does not attack just one side.

At this point I am freaking out. I have gone to the hospital several times. They cannot figure out what is wrong with me. I tell them I am in pain, and they look at me like I am crazy. They started me on pain meds. (This is important as we will discuss later on). Dermatomyositis is attacking FAST and HARD!

11/10/2004 - Went to the hospital again. Kim and I am very frustrated at this point. There is something very wrong with me, but NO ONE can figure it out. Except one Dr. who God gave wisdom too. He suggested the we do a muscle enzyme test. GREAT another test, just what I need. Well, he tested me, and my muscle enzymes are through the roof!

You see, if you have ever worked out and you are really sore the day after, your count is about 300. Mine was 14,000. Can you imagine the pain I was in?

The Dr. told me that I might have Polymyositis or Dermatomyositis..... Huh? I can even say the dumb word, how can I have it? I was also told this was a rare and freak thing. I was told that my immune system attacks itself and eats away my muscle ie. muscle wasting disease. The Dr. at the hospital referred me to a rheumatologist. (Finding the right Dr. is a MUST, as we will discuss later) I left very scared, and alone..... what did this mean for me Death? Wheelchair? HELP LORD!!!!

Welcome

Welcome!

If you found this site, I would guess that you are searching for answers about Dermatomyositis, Polymyositis, or a Myositis for yourself or a loved one. I have lived with Dermatomyositis since October 2004. I have one of the worse cases that the doctors have ever seen.

I have always been involved in physical fitness my whole life. Karate, biking, and bodybuilding. The picture of me is in July 2001. I show this not out of pride, but for you to see the severity that Dermatomyositis took on my body.

If you were like me you are scared, confused, angry, and maybe depressed. Dermatomyositis is a rare disease, and there is not much out there. Plus, to make matter worse there are not a lot of doctors that know much about it.

There is no cure for Dermatomyositis, no miracle pill, or drug. There are people that have mild cases, and some that have severe cases like me. I believe that God does not put you through the "junk" of life to be quiet. Whatever you have gone through needs to be shared with others, to help and encourage.

If you are one of these people that I have described above, please post or you can contact me at Gods411@coastaccess.com. There is nothing like speaking to someone who has "lived" what you are going through.

I kept a journal for most of my experiences with Dermatoyositis, I will start to post from when the disease; Dermatomyositis crashed into my life.

God Bless!

Jim Bushmiller