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.
Sunday, March 7, 2010
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.
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 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, he took on all the things I was unable to 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.
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 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, he took on all the things I was unable to 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.
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 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.
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 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.
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.
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.
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