15 Years since it began

It's been a very long time since I posted anything to this blog, but I had a brief conversation on Twitter over the weekend that made me think about it again.

It's been 15 years since my myositis journey began and I took a few minutes to browse through a few of my posts as a reminder of how far I have come.

Things are not the same as they were 15 years ago when it all began. My kids have grown up and many of my symptoms have subsided. My hair is back even though it's not as thick as it once was.

I still struggle with the prednisone weight.

I'm not the same person I was before this came into my life.

I used to be much more fun loving and goofy acting. I'm not sure if it's the process that has sucked that out of me or the self-consciousness of carrying this extra prednisone weight.

I have moments when I feel like the old me, but then something will happen that brings me back to reality.

So 15 years later, I'm still here and I still have a lot of work to do to get myself back.

I look like I lost a fight with a pencil eraser

During the visit with Dr. Jeff when he offered to treat the rash on my face at no cost to me, he took the "before" pics.

I was more than happy to oblige for a couple of reasons. First- he was treating me free of charge. I think a few pictures are the least I could do. Secondly- dermatomyositis is a rare disease. Most doctors may never see one case their entire career. I think it's important for medical students to have exposure to as many rare diseases as possible to help them think outside the box when trying to formulate a diagnosis. It's not uncommon for DM to be misdiagnosed for a period of time resulting in permanent disability to the patient.

So Dr. Jeff got his pictures and scheduled an appointment for my first laser treatment. I was given a topical anesthetic gel to apply an hour in advance. He also instructed me to place plastic wrap over the gel to help my skin absorb the gel prior to treatment.

You can probably imagine the looks I got walking through the hospital with my red face covered by plastic wrap. I wasn't bothered by it at all. I was used to getting looks for the red face.

On my first visit, Dr. Jeff gave me protective goggles for my eyes, fired up the laser and we were off. Even with the gel, the laser was a little painful. It felt like needles poking me in the face. Maybe comparable to a tattoo, but I've never had one to know for sure.

He treated a large area of my face in a relatively short period of time then explained what I should expect to happen next. He told me my face would look bruised. Then the bruises would turn into scabs and flake away. If the treatment worked the way he hoped, the skin underneath should be completely free of any rash. "You should never be able to tell it was there."

Once the bruising started, they were perfectly round and about the size of a pencil eraser. The big joke at work was that I lost a fight with a pencil eraser.


Over about the next week or two, the bruises turned into scabs and flaked away just as Dr. Jeff said they would. Underneath? Brand new skin. No rash at all. I was ecstatic!

I went back to Dr. Jeff for a few more treatments and more pictures of the progress. Eventually, it was all gone.

The whole time I had the rash I really never thought that much about it. It didn't bother me to go out in public, or so I thought.

I never realized how much it really affected me  until it was gone.

Back to the dermatologist we go

I had been making regular visits to the dermatologist to keep an eye on the rash and keep track of the meds we were using to try to bring it down. Nothing really seemed to be working and now that we had finally reached the point that my muscles seemed to be improving, I was really hoping we could get rid of the rash on my face.

I was never really all that concerned about the rash or the hair loss as it was occurring but now that everything else seemed to be improving, I wanted more.

During my visit with the dermatologist, he asked if I would mind having a colleague of his come in and take a look. By this time every doctor I had seen had a minimum of 3 students visit with me so why not?

What I did not know was the doctor coming in to see me (I'll call him Dr. Jeff) specialized in auto-immune related skin issues. He was also a professor at the local med school (this is local teaching hospital).

As he looked over the rash on my face, he informed me that no medicine would make this rash go away. It was permanent. The blood vessels had been so badly dilated for so long there was nothing that could be done, BUT he had something he wanted to try. I was taken back by the thought this could be permanent and I told Dr. Jeff I was up for anything is he thought it would help.

Dr. Jeff had been using lasers to remove auto-immune driven rashes and had been pretty successful so far. He had never used it on anyone with a rash as bad as mine and wanted to give it a shot. Of course, I said yes.

The doctor submitted all the paperwork to my insurance company explaining why this was necessary and why this was a medical condition. Not surprisingly, the insurance company turned down the procedure stating this was a cosmetic procedure. Dr. Jeff was not happy and neither was I.

Dr. Jeff was pretty anxious to try the laser on my rash so he decided to do the procedure free of charge. The only thing he wanted were before and after pictures to use in as a teaching aide.

A few pictures to be free of the rash? No brainer.

Starting to see improvements- but wait, there's more...

Things seem to be looking up. My hair is growing back and my muscle pain is improving. It should be smooth sailing now!

Hold on... not so fast.

One thing that is not improving at all is the rash on my face. The rash over my joints seems to be improving but my face is not changing at all. I also have noticed something new. I have have very sore spots all over my abdomen, around the edge of my armpits, at the top of my breast and the back of each arm from the top to my elbow. These are not just sore spots but there are hard knots in every spot that is sore.

It started with just a few on my abdomen. When they became extremely sore, I saw a surgeon to have them removed and sent off to find out what they were. It turned out to be calcinosis with fat necrosis. Simply put, calcium deposits with dead fat tissue surrounding them.

I went back 4 times to have more removed from my abdomen. I'm still angry that the surgeon wouldn't remove more fat tissue while he was at it but what can you do? :)

The calcium on the backs of my arms became very large and painful and when I noticed a lump at the top of my breast and up near my armpit, I wanted to have them removed right away.

Since DM can be caused by an underlying cancer, there was always the concern that something we had been unable to detect initially may pop up. I wasn't taking any chances since my mom had breast cancer (she has been cancer free for over 20 years).

I have always had a high tolerance for pain medication and sedatives. In fact, I can recall numerous conversations I had in surgery with my surgeon and nurses when they told me 1) I should be asleep from all the drugs they gave me and 2) I will not remember anything that happened. Sedatives and pain meds don't scare me but general anesthesia terrifies me.

One of my biggest fears was realized when the surgeon said I would have to be put under to have the calcium deposits removed from my arms because they were large and he couldn't safely give me enough sedative for a surgery that would last this long.

Reluctantly, I agreed and we scheduled surgery.

The surgeon expected surgery to last about 45 minutes. He would remove the large calcium deposits in my arms and the calcium deposits by my armpits and breast. Surgery ended up being 2.5 hours.

Once the surgeon started he could see the calcium deposits were much larger than expected (approx 8" long and 1" in diameter). They were also attached to the muscle tissue so he could not remove them entirely without risking permanent damage to my already scarred muscle tissue. The rest of the calcium deposits were small and easily removed. Everything came back benign as expected.

Recovery was much more painful than I expected but it was worth it to have those huge deposits out.

Now it was time to head back to the dermatologist to see what, if anything, could be done about the red face that would not go away.

We Need to Change Things Up

After being treated with Prednisone and Plaquenil for about a year, the doctor was becoming concerned with the side effects of the Prednisone.

The weight gain, water retention, infections, increased risk of bone loss, sleep issues and the fact that I seemed to hit a wall where the medicine was just not improving my condition any more were enough for him to make a change.

When you are taking Prednisone you can not just stop. Prednisone is a corticosteroid. Corticosteroids are produced naturally by your body and when you are taking prednisone, you body will slow the production and even stop producing them all together. You have to slowly taper the prednisone so your body will adjust and pick up the production on it's own.

While tapering the prednisone, the doctor had me start a new med called Methotrexate. Methotrexate is an immunosuppressant drug and works to suppress the immune response your body is having against, in this case, your body. Methotrexate is also used as a chemotherapy drug but in much higher doses than I was prescribed.

The doctor warned me that this new medicine could cause hair loss. Huh, hair loss. I had huge patches of hair missing already. What's a little more hair loss?

The doctor started me at 10mg of methotrexate. I think he thought it would be enough combined with the prednisone we were tapering. After a couple of months with no improvement, he upped the dose to 20mg.
It seemed to help but not as much as he had hoped. He really didn't want to go any higher because, let's face it, he's giving me poison to treat my affliction.

Rather than increase the dose, he decided I should take the same amount injected once weekly. I decided to do it myself to avoid weekly trips to the doctor.

After a few months of injections I couldn't believe it. Something was working! FINALLY!

The pain was beginning to ease a little and the rash on my hands, joints and scalp was getting better. No improvement in the rash on my face.

The best surprise? Not only did I not lose hair on methotrexate, my hair started growing back. I was beyond thrilled!

Strength vs Fear

I ended an earlier post by saying that I did not want to stop moving because I was afraid that if I were to stop, I would never move again.

My friend Grace (be sure to check out her blog http://doingthemathcountingmyblessings.blogspot.com/ ) made an interesting comment, "Amazing... you hit on something that makes me wonder... when friends, peers, family say to one that is going through a difficult physical sickness... and we say how strong you are... I wonder how often the person that is going through the sickness thinks we are crazy as they don't feel strong. But instead of feeling strong... what they/you are feeling is fear... of stopping and perhaps never moving again."

This was thought provoking for me. I started to think about everything I had been through how scared I actually felt during the course of this battle.

For me personally, I don't really think I was scared most of the time. There were events that would occur or things I would learn that might worry or scare me for a bit but overall, I think I just plugged ahead.

I am a pretty logical thinking person for the most part and I don't let my emotions rule me most of the time. I look at a situation and I do what I think is necessary to bring it to a conclusion.

The moments of "fear" I experienced were short lived and I think were born from the lengthy nature of the battle and the fact that there was no definite end date.

The fear of not being able to move again was not a palpable fear but more a thought in my head that told me I can't sit down and I can't let this beat me. Life must go on and it will go on as normal possible.

I never took the time to think too much about what could happen. I just pressed on as we all must do no matter what it is in life we face. I don't consider that to be strength and I don't consider that to be fear. I call it survival and we all must do it even if it is slightly different for each person.

"Someone has a really bad sunburn!"

When my symptoms first appeared and I was prescribed 40mg of prednisone per day, my condition improved significantly. After I had tapered the dose down, I became significantly worse than I was in the beginning.

Since I experienced the quick improvement initially while on the prednisone, I expected that I would return to normal very quickly. Sure, I was worse but I was taking twice as much so it stands to reason that I would improve right away, right? That's not exactly what happened.

Even though the dose was doubled, I continued to get weaker and the rash continued to get worse. My scalp was very irritated and I began losing hair. I also began packing on weight with the prednisone.

I pretty much took it all in stride. I viewed these as things that would happen but it would all run it's course and I would get better. I didn't know that for a fact but that was the way I chose to look at things.

One thing that I never thought about in the beginning was how people viewed me when I went out in public.

Even before I began losing my hair, the rash was pronounced and would garner double takes and stares. On one occasion while out to lunch, there was a table of young business men who had a great time laughing and joking about the way I looked. I don't think they realized I knew they were laughing at me, but I have good hearing and I'm pretty observant.

I really didn't mind the double takes and the stares. I wouldn't have minded a question about why my face was red but I was never one to approach a stranger and ask them about a condition so why should I expect that. After the incident with the men in the restaurant, I considered printing some cards explaining my condition with a line on the bottom telling whoever I gave it to that they should consider that a person may have a medical condition that makes them look funny before they act like a bunch of dickheads in public.

I didn't print the cards but I enjoyed thinking it up and all the insults I could add. :)

With two children in elementary school at the time, there were visits to the school every so often. Once while picking up one of my kids for an appointment, a fifth grade boy who was working in the office as an aide came to the counter and said, "Someone has a really bad sunburn!" and he smiled at me thinking I really had a sunburn.

I smiled back and said, "It's not a sunburn. I have a condition that causes my skin to get red like this, but don't worry, it's not contagious."

The smile on his face was replaced with a look of concern. He said, "I am so sorry. Does it hurt?"

I said, "You have nothing to be sorry for. I can see why you thought it was a sunburn. It's a little sore, but I'm OK." I smiled at him again. He smiled back and I left with my child for our appointment.

It struck me how sweet that boy was and how much concern he had on his face when he found out I was ill. Those were the questions I didn't mind answering.

I've mentioned the rash quite a bit and I'm sure it's hard to imagine how it looked. I only have a few pictures with the rash and I have been reluctant to let anyone see them, but I decided I should post one so anyone reading this can see what I am talking about.

This picture is prior to the time I lost most of my hair. It was beginning to thin, but it isn't really obvious.