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.
Showing posts with label strength. Show all posts
Showing posts with label strength. Show all posts
Monday, August 23, 2010
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!
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.
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.
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