Wednesday, October 6, 2010

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.

Thursday, September 30, 2010

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.


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Monday, August 23, 2010

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.

Tuesday, June 1, 2010

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!

Sunday, March 7, 2010

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.

Thursday, March 4, 2010

"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.

Thursday, February 25, 2010

The family

As I mentioned previously, at the time my symptoms started I was in a new relationship and my kids were 9 and 10 years old.

I'm not really sure what went through mys kids minds as I struggled with DM. I could tell they both became protective of me and my daughter wanted to help me a lot. I know it was scary and difficult for them at times but I tried to keep things as normal as possible.

Then there was the new relationship.My boyfriend moved in 2 months prior to the onset of my symptoms.It's hard to say what someone would do in the face of a daunting diagnosis. Some people would turn and run.

By about the 5th month we lived together, I was barely functioning. I left for work in the morning and as soon as I came home, I had to go straight to bed to rest from the work day. I had no energy to do anything.

Then there were the physical changes to deal with. My face was constantly red. I had other patchy red areas on my body over my joints.

My hair was falling out in clumps. Then there was the weight gain from the prednisone. I gained 80 pounds in less than a year from the steroids.

Why would anyone stay in a relatively new relationship with all that going on? Well he did. Not only did he  stay but he took on all the things I could not do.

He started doing all the laundry and the grocery shopping. He dropped the kids off at school and picked them up after school. He did all the cooking and the majority of the cleaning.

I am not really sure what I would have done without him.

Wednesday, February 24, 2010

My new reality

Up to this point I have mainly written about the mechanics of what took place with little on the impact this really had on me and my family.

I was a divorced mom of 2 and involved in a new relationship at the time this all started. My kids were 9 and 10 years old.

I was very active exercising an hour a day almost everyday. I had grown up very heavily involved in sports and I was fiercely independent.

I was very strong physically and mentally.


By the time I started seeing the rheumatologist, my whole world had changed.

I got up every morning and took a shower for work. After the shower, I had to lay down in bed and rest before I could get dressed. After getting dressed, I had to lay down and rest before leaving for work.

I could not tie my own shoes. I did not have the strength to hold my body in a bent over position to tie my shoes so my 10 year old daughter would tie them for me.

I could not hold a blow dryer above my head long enough to dry my hair, which was falling out by the handful.

We lived in a second floor apartment with no elevator. To walk up or down the stairs required a rest stop half way.

If I tripped, I could not catch myself and I would fall. When I fell, my arms were not strong enough to break my fall so I would land on my face. Once I fell, I could not stand up without help.

I could not stand from any low furniture. I had to carefully choose where I would sit to make sure I could get up again.

I could barely swallow. Eating was a constant choking risk and I found myself washing each bite down with water like you would a pill.

I could not shop at the grocery or do laundry myself. I couldn't carry anything over a few pounds.

I could barely turn the steering wheel on the car using both hands. I should NOT have been driving.

I never stopped working, I never used a handicapped parking permit and I would never allow myself to stop moving. I couldn't.

My biggest fear was sitting still. I was afraid if I stopped moving, I would never move again.

Am I the youngest person here?

Sitting in the waiting room on my first visit to the Rheumatologist at age 32, I noticed one thing right away. Everyone else sitting in the waiting room with me was at least twice my age. I didn't really have an issue with this because my body made me feel every bit as old as everyone else in the room.

During this visit I had to go through the entire story of my symptoms and everything else that I had gone through to lead me to his office.

The dr. immediately put me on 60mg of prednisone per day and a medicine I had never heard of called plaquenil. The prednisone is a corticosteroid used as an anti-inflammatory. The plaquenil is used more specifically for the rash.

Plaquenil is actually an antimalarial drug. While used for treating malaria, it was found that plaquenil would also reduce inflammation in patients who had auto-immune disorders. It is now a commonly used drug in the battle against inflammation.

The use of plaquenil does not come without risks. The dr. informed me I would have to see an ophthalmologist every 6 months to make sure the drug had not caused any changes to my eyes.

I was also given a prescription for a calcium nasal mist because prednisone use can deplete calcium levels.

The dr. said that the I would need an additional test to confirm the diagnosis of DM. Although he was certain I had it, auto-immune disorders are tricky and can change from one to another. We needed a baseline so we would know where we started.

An appointment was scheduled with a surgeon for a muscle biopsy to confirm the diagnosis. I then had more blood drawn, scheduled an appointment for the next month and headed home.

This would be the monthly routine for the foreseeable future.

I had my muscle biopsy and my diagnosis was confirmed. 100% certain, dermatomyositis.

Tuesday, January 12, 2010

My new family practice doctor...

Before leaving the dermatologist's office, he told me he would be contacting my family dr. to discuss the diagnosis. I left the office and went back to work.

I had been back to work for a few minutes when I received a phone call from my family dr. She said she had just gotten off the phone with the dermatologist and that we needed to get an appointment scheduled with a rheumatologist as soon as possible. She asked if I had a preference, which I did not. I didn't know any rheumatologists so I was trusting her judgment.

About another hour later my family dr. called back. She told me she had contacted the rheumatologist and scheduled my appointment and gave me the information. I was to see the rheumatologist in about 2 weeks.

She paused for a moment then said, "Do you realize this is a pretty serious condition?"

I said, "Yes. I've read about it on the internet so I know it can be serious."

Family dr.: "I will need to see you again prior to your visit to Dr. (rheumatologist). I want to discuss this more and we have some other things we need to do."

I was back in my family dr.'s office within a week. The reason she wanted to see me face to face was to tell me something I had not learned from the internet. She informed me that DM can sometimes be caused by an undiagnosed cancer and I needed to be screened pretty thoroughly to rule out cancer as a cause. I was taken back a little by this but I had to make sure this was not the case.

We scheduled numerous tests over the next few weeks. I was poked, prodded and scanned. In the end, I did not have cancer. What a relief. I don't know if I could have handled a double whammy.

One thing I learned very early in this battle was how important it is to have doctors on your team that you trust and you feel really care about you and your recovery.

This was a doctor I had seen for the first time ever about6 or 7 weeks prior. The fact that she personally scheduled my appointment and personally called me back went a very long way to building what would become a strong bond.

She showed her concern for ME. I wasn't a file she looked at when I came to her office. She knew me and cared.

Now on to the business of fighting the DM. Next stop, rheumatologist.

Saturday, January 9, 2010

Med Students *sigh*

After the dermatologist told me he believed I had DM, he said I had a CPK (muscle enzyme) result of 1400. The normal range is 22 to 198. This indicated that my muscles were inflamed and being damaged and, combined with my symptoms and other blood work, led the doctor to his conclusion of DM.

After we finished our discussion, he told me DM is pretty rare and for this reason would like to know if I would allow a couple of med students in to ask questions. I agreed and a few minutes later, there were two young med students in the exam room with us.

The doctor showed them my chart and test results. After they discussed it briefly he asked them if they had any questions for me. The doctor had not given either of them my diagnosis at this point and was trying to get them to form their own opinions of what was wrong.

One of the students paused very thoughtfully, looked at the chart again and asked, "Did you experience any crushing chest pain on or about (I don't remember the date but it was the date the blood work was done 1 month prior)?"

I responded, "No, I did not have any chest pain."

Student: "At least not that you recall?"

Me: "I think I would recall 'crushing' chest pain. I would most likely have gone to the ER."

I could see the doctor trying not to chuckle at the exchange, but I wondered where on earth that question came from.

The doctor told the students that I have DM and explained to them why my CPK level was elevated and then it dawned on me why the student asked the question. The CPK test is also used when there is a suspected heart attack. The heart muscle releases the same enzyme when damaged during a heart attack.

I actually almost laughed a little myself thinking that the med student was diagnosing me with a heart attack a month after the fact. Oh well, I think they both learned something that day.

I had many more med students in my future, but right now I needed to take in the diagnosis and find out what came next.

Thursday, January 7, 2010

You're not weak enough...

After my new doctor dropped the bomb that she thought I had Lupus, she prescribed 40mg per day of Prednisone. She also scheduled an appointment with a dermatologist for a skin biopsy that would confirm whether or not I had Lupus.

The Prednisone helped tremendously. By the time I saw the dermatologist, my legs were almost pain free and my rash, although not gone completely, was much better.

The dermatologist asked me to go through all the symptoms again. He checked the rash on my face and on my hips. He then did a quick strength test of each arm and each leg. I was able to push his hand back quite easily with each limb.

The doctor said, "I thought you may have something called 'dermatomyositis', but you are not weak enough so I don't think that's what you have." I had never heard of this disease before, but I committed the name to memory.

Since the first time I called my original doctor's office for an appointment, I had been scouring the internet trying to diagnose myself. My sister has Celiac Disease (auto-immune gluten intolerance) so that was my first target. What I found was that my symptoms fit about 100 different diseases. I would research this "dermatomyositis" when I got home from my appointment.

The doctor took the skin biopsy from my hip and wrote out an order for what appeared to be 50 different blood tests. He then told me that Prednisone can be a very nasty drug if you are on it very long and he wanted to taper me off. I don't think he would have done this had I appeared "weak enough" to him. I was scheduled for a return visit in a month and left to have blood drawn.

I'm not sure what exactly he ordered, but I know at least a CPK (Creatine Phosphokinase or muscle enzyme), SED rate (erythrocyte sedimentation rate) and an ANA (antinuclear antibody). The SED and ANA are commonly used when trying to determine an auto-immune diagnosis and the CPK because of my muscle involvement. I would have to wait a month for those results.

After going home, I followed the schedule and tapered down my Prednisone. When I did this, my symptoms came back with a vengeance.

The rash now covered my entire face, neck and scalp. It was so red in spots it looked purple. I had red and purple patches over my knuckles, elbows and knees. My thighs were so painful, I did not want to be touched. I had trouble standing from a seated position. I could barely hold my arms above my head.

I did my research on "dermatomyositis", and I was able to place a check mark next to every symptom. I knew this was it and I knew the doctor would see it when I returned.

I went back to the dermatologist in this condition. Once he saw me and did another quick strength test, he said it was very obvious to him now that I did in fact have dermatomyositis (DM).

After the exam, the doctor went over my blood work which confirmed the diagnosis.

I stated in a previous post that I was "lucky" to have the unsightly rash. The reason I say this is that DM is a rare disease. There are many people in the medical field who have a) never heard of it or b) have heard of it but may never see a case in their entire career.

The rash was a red flag to this dermatologist. The fact that he had both heard of this disease and that he made the connection due to my rash make me a very lucky person. I was diagnosed early when many people may have gone a year or longer mis or undiagnosed causing permanent muscle damage and in some cases death.

Because this is a rare disease, every doctor I went to wanted every intern and med student in their grasp to meet with me. This was a great learning experience for them and I was more than willing to let them have exposure to this rare disease. If this helped them diagnose someone early on , it was well worth the few minutes I spent with each of them.

My first experience with the "newbies" was this particular visit to the dermatologist. But that will wait until next time.

Wednesday, January 6, 2010

What is going on?

We all experience little things with our health or our bodies that we either completely ignore or rationalize in our mind that nothing is wrong. Looking back, I had little signs that something might be wrong up to a year prior to seeking medical attention. I never realized these little things went together in anyway and they were so minor, seeing a doctor never crossed my mind.

It all seemed to begin within a few months of a very nasty virus that kept me off work for a week. This was around February.

A few months later, I noticed that my lips were chapped all the time and it was summer. This was very odd for me but I never thought it was a medical issue.

Within the next few months, I noticed that my cheeks, chin and nose would turn red at the same time everyday. Very strange, but not a real problem. As time went by, the redness would come and go more frequently. I also noticed itchy, light purple patches on my hips.

I started to think I had developed a food or detergent allergy. I changed soap brands and began eliminating food items to see if the problems would go away, but they just continued to get worse.

The first time I considered going to the doctor was when I began to notice issues with my muscles.

I had been working out for about an hour almost every day for several months when I suddenly began to experience extreme muscle soreness in my thighs. I should not have been sore at all at this point.

My doctor was out of town when I called to schedule an appointment so I had to see a different doctor in the practice. By this time, I had muscle pain and the rash had become almost constant. The rash had also spread down my neck, onto my scalp and onto my eyelids.

The "substitute" doctor assured me I was suffering from a seasonal contact allergy and prescribed a topical steroid for the rash but nothing for the pain. The steroid ointment didn't do much to alleviate the rash and nothing for the pain.

After a few weeks, I called the doctor's office again and again, I was unable to see my doctor. This time I saw a different doctor from the first visit. He also assured me this was an allergy issue. His solution was two steroid injections and a steroid dose pack.

Within a few days I felt great. He was right! It is an allergy!

After the injections and the dose pack wore off, all the symptoms returned.

Frustrated with my doctor's office and the fact I could not even see my own doctor, I scheduled an appointment with my mom's doctor. I was scheduled to see the Nurse Practitioner since I was a new patient.

My first decision prior to this appointment was to think about every little minuscule little thing going on with me no matter how minor it seemed, and tell the Nurse Practitioner.

I don't even remember everything I rattled off other than the rash, the muscle pain and my tongue feeling like it was coated with something. I just know it was a long list and when I was done, the Nurse excused herself for a moment.

Within 30 seconds, the doctor was in the room. She went back through my extensive list and checked me over pretty thoroughly. Once she had finished, she asked, "Have you ever heard of Lupus?"

I had and for the first time I was scared.

Sunday, January 3, 2010

How would you react?

Have you ever wondered how you would react if you were given a diagnosis that would change your life? I never gave it a thought until it happened.

My diagnosis brought a sense of relief. I suffered for 3 months prior to diagnosis so I was relieved to finally have a name to attach to my symptoms.

So you may wonder, "What is myositis? ". Myo refers to muscles and itis is inflammation so myositis is literally inflammation of he muscles. Muscle inflammation can have many causes and is normally only temporary, but there are a group of inflammatory myopathies that are believed to be auto-immune in nature.

My specific diagnosis is dermatomyositis. Derma refers to skin, so in addition to muscle inflammation, I have skin involvement. I had patches of dusky pink and purple skin over several joints and the "butterfly rash" that is commonly seen with Lupus and other auto-immune diseases.

The rash was unsightly, but I was very lucky to have it. I'll explain in my next post.