It appears, to me, that when you have an autoimmune disorder you are at risk of developing other autoimmune disorders and, of course, other illnesses. Side-effects of medications that are suppose to be helping you cause even more problems. It is a never ending cycle.
I have cushings syndrome due to the side-effects of the steroids.
My vision has been affected...not badly, but I get to wear glasses to read/etc.
My hair falls out by the hand-fulls. I'm assuming this is b/c of the imuran or the methotrexate. Luckily, I have very think hair.
Raynaud's syndrome...not sure what's caused that...steroid use maybe?
Steroids have def caused weight gain. 50lbs total so far. It really is miserable to be overweight. I need to lose at least 35 to be at an "ideal" weight, according to me doctor. But how do you do that when you can barely walk or lift things. Just taking a shower feels like a workout.
Well, the pain has been so much worse. My doctor thinks I may have yet another illness. Of course, my risk for this was higher due to the use of steroids. Avascular Necrosis. I don't know much about it yet...only that it causes severe pain and causes the "bone to die"? It isn't official yet. I've had xrays. Next are MRIs. Then...well, I don't know. Just another leap into this unknown world.
Saturday, February 27, 2010
Thursday, November 26, 2009
Another Thanksgiving Thought
Emotionally/Mood I feel more like ME than I have in...well, probably since being diagnosed with PM. It has been very eye opening to see how the very drugs that are to help you with your physical health can cause so much emotional harm. Nevertheless, I'm feeling better...like me again (emotionally). Now, if we could only get this body to work right again. I am starting to accept the idea that I'm never going to run again and do many of the things I use to do...but, there are some things that just need to change. This medication has caused sooo much weight gain and I really need to drop the weight...it's more than a physical/how I look thing...it's also just not healthy to be overweight like this.
Every year on Thanksgiving it has been our tradition to make a big pot of Chili and spend the day putting up Christmas decorations. Well, since it's just me and my daughter this year, we won't be doing that (I can't physically put up the decorations, or get them out of the attic). It is a bit sad, a tradition lost kind of thing. Another thing lost to the polymyositis. Of course, she's hitting her teenage years and making a new tradition of sleeping all day. ha.
Everyone enjoy your day...Happy Thanksgiving!
Every year on Thanksgiving it has been our tradition to make a big pot of Chili and spend the day putting up Christmas decorations. Well, since it's just me and my daughter this year, we won't be doing that (I can't physically put up the decorations, or get them out of the attic). It is a bit sad, a tradition lost kind of thing. Another thing lost to the polymyositis. Of course, she's hitting her teenage years and making a new tradition of sleeping all day. ha.
Everyone enjoy your day...Happy Thanksgiving!
Thanksgiving 2010
Not what we say about our blessings, but how we use them, is the true measure of our thanksgiving.
Thursday, November 5, 2009
CellCept
Wow, so it's been a long time.
The last few weeks have been pretty hard. I'm still having to take IVIg each month for the Polymyositis. None of the oral medications have been enough to keep things under control. Even with the IVIg, my CPK numbers have been a bit above normal, though nothing like when first diagnosed. Anyway, my doctor had me start on CellCept. I read alot about it before hand. Even amongst the side effects that sounded terrible, there seemed to be lots of people that have responded really well to the CellCept. And, it was my last option. So, I started it, but it caused some depression...so, she took me off of it for a couple of weeks to see if things with the depression leveled out. It did, but I wanted to try it again, so she agreed. Next time, maybe I should listen to the doctor. I spiraled down very quickly into a severe depression. I'm off of the CellCept for good now. What the future holds, I don't know.
Even with the CellCept gone now, the depression has not lifted...well, may be a little, but definitely not enough. I'm living in this dark, miserable world that I wish to leave...I'm so very tired of trying this or that medication...and tired of waking up in the morning and hoping that I'll be able to get out of it without trouble...or that I'll make it through the entire work day...and then coming home and barely getting dinner fixed when all I really want to do is park it on the couch or bed and sleep...and stop hurting (physically and emotionally)
The last few weeks have been pretty hard. I'm still having to take IVIg each month for the Polymyositis. None of the oral medications have been enough to keep things under control. Even with the IVIg, my CPK numbers have been a bit above normal, though nothing like when first diagnosed. Anyway, my doctor had me start on CellCept. I read alot about it before hand. Even amongst the side effects that sounded terrible, there seemed to be lots of people that have responded really well to the CellCept. And, it was my last option. So, I started it, but it caused some depression...so, she took me off of it for a couple of weeks to see if things with the depression leveled out. It did, but I wanted to try it again, so she agreed. Next time, maybe I should listen to the doctor. I spiraled down very quickly into a severe depression. I'm off of the CellCept for good now. What the future holds, I don't know.
Even with the CellCept gone now, the depression has not lifted...well, may be a little, but definitely not enough. I'm living in this dark, miserable world that I wish to leave...I'm so very tired of trying this or that medication...and tired of waking up in the morning and hoping that I'll be able to get out of it without trouble...or that I'll make it through the entire work day...and then coming home and barely getting dinner fixed when all I really want to do is park it on the couch or bed and sleep...and stop hurting (physically and emotionally)
Saturday, April 4, 2009
Life with Polymyositis
Each day that I wake up I wonder what the day will bring. Will I walk a bit better, or will I even be able to lift my leg up? The side-effects of the medications are almost as bad as the disease itself. Interesting...I have a disease characterized by muscle weakness and one of the medications that I have to take to treat it can cause side effects of .....muscle weakness. Go figure. The side effects are numerous...weight gain, hair loss, acne, blurred vision, insomnia, mood swings, etc.
Since being diagnosed with Polymyositis I've been diagnosed with several other things...effects of the disease or the medications: high blood pressure, migraines, neuropathy in my hands and feet...and several other things.
Since being diagnosed with Polymyositis I've been diagnosed with several other things...effects of the disease or the medications: high blood pressure, migraines, neuropathy in my hands and feet...and several other things.
Tuesday, December 16, 2008
A wish list to Santa
This story makes me so sad. So sad that a child's Christmas wish has to be that she is safe and loved...not hurt and used through out her life. Sad that this is the only way a child can find help.
Thank you to that teacher that didn't turn her head the other way...who bothered to get involved.
May this child go to sleep tonight knowing she is safe and loved. May God be with her, keep her protected.
Thank you to that teacher that didn't turn her head the other way...who bothered to get involved.
May this child go to sleep tonight knowing she is safe and loved. May God be with her, keep her protected.
Friday, November 7, 2008
The Fight is Gone
I can't deal with anything more. I'm at my limit.
If I have another year like the last 1 1/2 have been...heck, if I have another day that is similar to the last 1 1/2 years.
I've lost my son, for all purposes. He won't speak to us about 90% of the time. He's always had problems, but now he seems like a totally different person in many ways.
My career...what can I say, 9 1/2 years with one place...to see the entire company just crumble has been heartbreaking.
I love doing foster care and can't do it any longer. I miss it more than I thought I would, really. I love having kids all around...and being busy running here and there.
And, I want my health back...to walk normally, to be able to lift things, clean my own house, take long walks, run, etc etc.
It's all gone and out of my reach. I no longer know what my purpose is in life. I no longer have a purpose in life. And, I don't want to live this life. I'm not going to live this life. I give up. The fight is over.
If I have another year like the last 1 1/2 have been...heck, if I have another day that is similar to the last 1 1/2 years.
I've lost my son, for all purposes. He won't speak to us about 90% of the time. He's always had problems, but now he seems like a totally different person in many ways.
My career...what can I say, 9 1/2 years with one place...to see the entire company just crumble has been heartbreaking.
I love doing foster care and can't do it any longer. I miss it more than I thought I would, really. I love having kids all around...and being busy running here and there.
And, I want my health back...to walk normally, to be able to lift things, clean my own house, take long walks, run, etc etc.
It's all gone and out of my reach. I no longer know what my purpose is in life. I no longer have a purpose in life. And, I don't want to live this life. I'm not going to live this life. I give up. The fight is over.
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