I was saddened to read about the death of a blogger I followed. http://rasuperbitch.blogspot.com/
She was bright, witty, and made me feel "normal" for being abnormal. I don't know how she died, but I do know she was in her thirties with a young son and a loving husband. Dammit, life is NOT fair!!!!!
I'm praying for the family of rasuperbitch. At least she is no longer in pain. In that respect I sorta envy her.
Monday, June 13, 2011
Wednesday, May 4, 2011
And now for the newest symptoms......
I've started experiencing muscle twitches and weakness. Nothing serious. Not like I'm having a seizure or anything. Very subtle...kinda like when you are just about to doze off and you jerk a little...? But the weakness is there. I feel the weakness. It's in the muscles of the bottom of my leg mostly. It's so strange.
Monday, April 25, 2011
Nobody Gets It
Today just sucked.
Sores on my tongue were driving me crazy. Pain level was a 9 a good part of the day. I got a hive in a new spot....on my left hand. And I was busy all day....so no nap. (ugh)
My husband got floor seats to the Mavs game, and I told him I didn't want to go. He made me feel guilty about it. He STILL is bugging me about having to turn down these tickets. He doesn't get how terrible I feel today.
In a couple of weeks, I am going to San Antonio with my daughter's choir as a chaperone. It will be a lot of fun....but a lot of walking. I REALLY am uneasy about going. I have been putting off writing the 360.00 check and I finally told her today that I wasn't sure I could go....BAD IDEA. She is correct in telling me that I *did* already commit to going---months ago. She was really upset and reminded me that it HAS been stormy a lot the past few days and I've told her that bad weather affects my pain. The weather won't be like this in San Antonio and furthermore, all the room assignments have been made. (hehe)
But seriously, I couldn't tell her no. I have to go.
Nobody gets it. Nobody knows how completely awful I feel. I'm really starting to fall into that wanting-to-just-disappear depression.
I need to find a doctor who can help me. Soon.
Sores on my tongue were driving me crazy. Pain level was a 9 a good part of the day. I got a hive in a new spot....on my left hand. And I was busy all day....so no nap. (ugh)
My husband got floor seats to the Mavs game, and I told him I didn't want to go. He made me feel guilty about it. He STILL is bugging me about having to turn down these tickets. He doesn't get how terrible I feel today.
In a couple of weeks, I am going to San Antonio with my daughter's choir as a chaperone. It will be a lot of fun....but a lot of walking. I REALLY am uneasy about going. I have been putting off writing the 360.00 check and I finally told her today that I wasn't sure I could go....BAD IDEA. She is correct in telling me that I *did* already commit to going---months ago. She was really upset and reminded me that it HAS been stormy a lot the past few days and I've told her that bad weather affects my pain. The weather won't be like this in San Antonio and furthermore, all the room assignments have been made. (hehe)
But seriously, I couldn't tell her no. I have to go.
Nobody gets it. Nobody knows how completely awful I feel. I'm really starting to fall into that wanting-to-just-disappear depression.
I need to find a doctor who can help me. Soon.
Saturday, April 23, 2011
What Makes Me Sad....
I went to IKEA today. I love that place. So much to look at and amazing ideas. I could shop there all day.
But I CAN'T!
Why? Because some no-name, nobody can figure it out, illness makes me feel like dirt after shopping for about 30 minutes. My legs start to ache and I start to feel feverish. It's horrible, but it always happens when I try to do anything that requires walking...including grocery shopping. That really makes me sad. I can't have a normal life if this is how I feel when I go out and do something.
I'm home now. I'm exhausted and have a temp of 99.5. I need to find a rheumatologist, even though I know they will be stumped too.
Another symptom I'm having a lot (with the chest pain and fast heart rate) is dry mouth. Fun, eh?
Hope you all have a wonderful Easter weekend.
But I CAN'T!
Why? Because some no-name, nobody can figure it out, illness makes me feel like dirt after shopping for about 30 minutes. My legs start to ache and I start to feel feverish. It's horrible, but it always happens when I try to do anything that requires walking...including grocery shopping. That really makes me sad. I can't have a normal life if this is how I feel when I go out and do something.
I'm home now. I'm exhausted and have a temp of 99.5. I need to find a rheumatologist, even though I know they will be stumped too.
Another symptom I'm having a lot (with the chest pain and fast heart rate) is dry mouth. Fun, eh?
Hope you all have a wonderful Easter weekend.
Sunday, April 17, 2011
Here We Go Again
I am going to call one last (I hope) rheumatologist tomorrow. I had to stop seeing the one I've been going to because he is not on insurance and since he still hasn't diagnosed me, it's just too dang expensive. I told him and he totally understood. It sucks having to start over, but we have to do it.
Meanwhile, I feel like I'm dying. I'm not kidding. I'm sicker than I've ever been. I'm in so much pain. My joints in my knees, fingers, and toes hurt all the time lately. After a nice little 2-3 month break from it, I'm once again getting the hive-like intensely itchy rash attack about every other day. My chest is now hurting a lot of the time, as well. Along with the pain in my chest, my resting heart rate is up around 95 a lot of the time. I'm just not feeling well at all. Quite frankly, I'm scared.
So I will try to find a new doctor tomorrow......me and my stupid mystery illness that shows up in none of my bloodwork. I need Dr. House! (don't I wish!)
Seriously, though, my gut tells me it's lupus. My last doctor was going to test me again for it, but he never got around to it. I don't know what to think or do anymore. All I DO know is that I am getting sicker. I need help and I pray that I can find a doctor who can figure this out.
I've been reading blogs every night, but just haven't felt like writing (or even commenting). I decided that I probably need to write 1~for therapeutic reasons...it always feels good to vent this way! and 2~to keep a journal/record of my symptoms...my memory sucks these days.
Hope you all are doing better than I am.
Meanwhile, I feel like I'm dying. I'm not kidding. I'm sicker than I've ever been. I'm in so much pain. My joints in my knees, fingers, and toes hurt all the time lately. After a nice little 2-3 month break from it, I'm once again getting the hive-like intensely itchy rash attack about every other day. My chest is now hurting a lot of the time, as well. Along with the pain in my chest, my resting heart rate is up around 95 a lot of the time. I'm just not feeling well at all. Quite frankly, I'm scared.
So I will try to find a new doctor tomorrow......me and my stupid mystery illness that shows up in none of my bloodwork. I need Dr. House! (don't I wish!)
Seriously, though, my gut tells me it's lupus. My last doctor was going to test me again for it, but he never got around to it. I don't know what to think or do anymore. All I DO know is that I am getting sicker. I need help and I pray that I can find a doctor who can figure this out.
I've been reading blogs every night, but just haven't felt like writing (or even commenting). I decided that I probably need to write 1~for therapeutic reasons...it always feels good to vent this way! and 2~to keep a journal/record of my symptoms...my memory sucks these days.
Hope you all are doing better than I am.
Sunday, November 21, 2010
Lesson Learned .... the hard way.
So....I'm officially going with the fibromyalgia diagnosis. The tests all came back pretty normal. No lupus, no inflammation or rheumatoid factor. My magnesium was low, so I'm pillin' it up for that. There was strep in my urine, but i have no symptoms of a UTI, so we aren't treating it. I tested positive for h.pylori again (been there, done that with the zillion antibiotic regimen to treat it, so I'll talk to my GP about it and probably will just ignore it). I stopped the mtx and arthrotec and am slowly increasing my Lyrica dose from 75mg 2x a day to around 200mg 2x a day.
I'm not sure why, but....this week has been AMAZING!!!! I've had my first completely pain free days since July 2009! I had 2 of them! And the rest of the week the pain was minimal...maybe a 2 or 3 out of 10. It was great!! I also had a lot less fatigue.
I've been really busy. My photography business is booming, Carly and Jake had tech week this week for a show they are in. They performed Friday night (with cast dinner after), Saturday matinee (with cast lunch after), Saturday night (I said heck no to cast dinner last night because I was too tired!!!!), and today is the last show at 2:00. I'm photographer of the show and I also photographed Carly's high school pop choir show (which was LAST weekend), so vie been editing every moment of my barely existent spare time. Saturday night I was up till 3:00 a.m. preparing/packaging four lacrosse teams' photo orders and working on a collage for the director of the play the kids are in.
So, guess what? Today I really hurt and feel like crap. I felt my knees getting "warmish" feeling last night, but today~full-on pain. Ugh. My knees, fingers, and ankles hurt. I feel flu-ish and yuck. I still have to take the portraits of the actors today before the last show which means setting up backdrop, lights, etc.
I guess I need to learn to NOT overdo it when I feel well. It's just...it had been so long and it was really nice to have energy and to not hurt again. I couldn't waste the opportunity to be productive.....
Still not 100% convinced I don't have sero-negative RA, but I guess 3 out of 4 doctors must be right.
Have a good day all and thanks for reading and for all your helpful and friendly comments.
I'm not sure why, but....this week has been AMAZING!!!! I've had my first completely pain free days since July 2009! I had 2 of them! And the rest of the week the pain was minimal...maybe a 2 or 3 out of 10. It was great!! I also had a lot less fatigue.
I've been really busy. My photography business is booming, Carly and Jake had tech week this week for a show they are in. They performed Friday night (with cast dinner after), Saturday matinee (with cast lunch after), Saturday night (I said heck no to cast dinner last night because I was too tired!!!!), and today is the last show at 2:00. I'm photographer of the show and I also photographed Carly's high school pop choir show (which was LAST weekend), so vie been editing every moment of my barely existent spare time. Saturday night I was up till 3:00 a.m. preparing/packaging four lacrosse teams' photo orders and working on a collage for the director of the play the kids are in.
So, guess what? Today I really hurt and feel like crap. I felt my knees getting "warmish" feeling last night, but today~full-on pain. Ugh. My knees, fingers, and ankles hurt. I feel flu-ish and yuck. I still have to take the portraits of the actors today before the last show which means setting up backdrop, lights, etc.
I guess I need to learn to NOT overdo it when I feel well. It's just...it had been so long and it was really nice to have energy and to not hurt again. I couldn't waste the opportunity to be productive.....
Still not 100% convinced I don't have sero-negative RA, but I guess 3 out of 4 doctors must be right.
Have a good day all and thanks for reading and for all your helpful and friendly comments.
Sunday, November 7, 2010
Four Rheumatologists...Four different opinions
Doctor one....Tests are all normal...Must be fine.
Doctor two....Undifferentiated Spondylarthropy or Seronegative RA
Doctor three..Fibromyalgia
Doctor four...Fibromyalgia AND something else that he needs/wants to figure out.
I saw one last (I hope!) rheumy on Friday. He was very nice. He took a lot of time before the exam talking to me about my symptoms, my experiences with the different doctors, my feelings, etc. After a thorough exam, he told me that he definitely agrees that I have fibromyalgia, but he doesn't think that's all I have. He did a lot of bloodwork, so hopefully we will figure it out this time. Once and for all. He says that I should hear back from him by a week from tomorrow.
Meanwhile, he said I should stop taking the mtx. If, after a couple of weeks, I flare big time...then we'll put me back on it. He took me off the arthrotec. (which allows me to stop taking the kapidex for my stomach). He changed my lyrica from 50 mg three times a day, to 75 mg twice a day. (easier for me to remember---I always forgot to take my middle of the day dose of lyrica for some reason). He wants me to switch from Effexor for my depression (that's NOT working) to Cymbalta as it is recommended for people with FMS. I have to go to a psychiatrist to get that going, since it's tricky weaning of Effexor and I've felt suicidal at times recently. (Ugh)
Anyway....I have to say that I had a really good day painwise! I was about a 1-2 this morning. After being at several lacrosse games, I started to hurt a bit around 2:30 so I went ahead and took a pain pill. The rest of my day was great. I had some fatigue during the middle of the day...and I'm exhausted right now...but it was a better day, healthwise, than any I've had for a very long time.
Praying for more days like this so that someday soon I can get a job, feel well, and start living a happy life again.
Hope you all had a good weekend and very little pain!
Hugs
Doctor two....Undifferentiated Spondylarthropy or Seronegative RA
Doctor three..Fibromyalgia
Doctor four...Fibromyalgia AND something else that he needs/wants to figure out.
I saw one last (I hope!) rheumy on Friday. He was very nice. He took a lot of time before the exam talking to me about my symptoms, my experiences with the different doctors, my feelings, etc. After a thorough exam, he told me that he definitely agrees that I have fibromyalgia, but he doesn't think that's all I have. He did a lot of bloodwork, so hopefully we will figure it out this time. Once and for all. He says that I should hear back from him by a week from tomorrow.
Meanwhile, he said I should stop taking the mtx. If, after a couple of weeks, I flare big time...then we'll put me back on it. He took me off the arthrotec. (which allows me to stop taking the kapidex for my stomach). He changed my lyrica from 50 mg three times a day, to 75 mg twice a day. (easier for me to remember---I always forgot to take my middle of the day dose of lyrica for some reason). He wants me to switch from Effexor for my depression (that's NOT working) to Cymbalta as it is recommended for people with FMS. I have to go to a psychiatrist to get that going, since it's tricky weaning of Effexor and I've felt suicidal at times recently. (Ugh)
Anyway....I have to say that I had a really good day painwise! I was about a 1-2 this morning. After being at several lacrosse games, I started to hurt a bit around 2:30 so I went ahead and took a pain pill. The rest of my day was great. I had some fatigue during the middle of the day...and I'm exhausted right now...but it was a better day, healthwise, than any I've had for a very long time.
Praying for more days like this so that someday soon I can get a job, feel well, and start living a happy life again.
Hope you all had a good weekend and very little pain!
Hugs
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