Thursday and Friday I had my IVIg treatment for the month. Thursday I saw Dr. Lowery and she did the tests she does to see if my strength has improved any...truthfully, I think I could just tell her and it would be more accurate, but whatever lol...anyway, she said according to her little tests, it was better than last month. I'd say that was in line with my own experience. I've been walking a bit more...even able to push the vacuum myself. I was able to lift my arms over my head, though I couldn't hold them there for any length of time.
The bad news...because of insurance I might be forced to find a new doctor at the first of the year. I'm pretty upset by that. I think there is a lot to be said in having a good working relationship with your doctor...and I love working with Dr. Lowery. She is wonderful. And, for me to say that about a doctor means a lot as I'm generally very critical of doctors. She knows my disease...she knows what works, what doesn't...she's been with me from the beginning of this fight. I do not want to go to some other doctor who doesn't know anything about polymyositis (even if they think they do). I shouldn't be forced to go to doctors at the facility where I work (they're the only doctors covered by my insurance). I just want MY doctor, Dr. Lisa Lowery.
Saturday, September 18, 2010
Saturday, September 4, 2010
Bobblehead dolls
Bobblehead dolls...know what I'm talking about? Those dolls that have the heads that bobble back and forth. That's what I feel like today. A bit of neck muscle weakness I suppose. I was talking to someone yesterday and in the middle of the conversation I was gasping for air...it was weird. But, I guess that is, again, some lung weakness.
My CPK levels, after my last IVIg, were lower...closer to normal, but not close enough to get Dr. Lowery to decrease the Prednisone. that evil drug. ha. Given how the weakness is in my neck today, I'm assuming that my CPK will be a bit higher when I go back for IVIg (1 1/2 weeks now). But, I haven't fallen and I'm still walking around the house and some at work...just not really far distances. Since it's starting to get a bit cooler outside I thought I'd see about using the walker and try walking down the street a little and increase that a bit at a time...just see what I can tolerate. I suppose, though, that some of that will depend on CPK levels.
My CPK levels, after my last IVIg, were lower...closer to normal, but not close enough to get Dr. Lowery to decrease the Prednisone. that evil drug. ha. Given how the weakness is in my neck today, I'm assuming that my CPK will be a bit higher when I go back for IVIg (1 1/2 weeks now). But, I haven't fallen and I'm still walking around the house and some at work...just not really far distances. Since it's starting to get a bit cooler outside I thought I'd see about using the walker and try walking down the street a little and increase that a bit at a time...just see what I can tolerate. I suppose, though, that some of that will depend on CPK levels.
Saturday, August 21, 2010
August update
Last week was my IVIg infusions for the month of August. Haven't heard just yet what my CPK levels are, but I'm feeling pretty good...so, I'm thinking they are still on the decline :) I'm feeling a bit stronger, I think. I'm walking more around the house and at work...as long as it isn't too far. My breathing seems to be better. I don't feel like I'm struggling to get a breath or have something heavy sitting on my chest.
Pain meds are wonderful :) Pain is more controlled. Probably another reason I'm able to try walking around more. I've not needed one of them as often as we thought I might...so, that's a good thing too.
All in all, it's been an okay month as for the polymyositis...if only we could get rid of the medical bills! My insurance company has decided to go back and reverse payments on the last 1 1/2 years of claims to one of my doctors. It has left me with over $11,000 that I supposedly owe to this doctor. I'm appealing it. The doctor's office is appealing it. and, the HR department where I work is looking into it for me as well, but I'm not sure what the outcome is going to me. It makes me really anxious. I hate to owe money to anyone. I guess, though, I could look on a brighter side...with as much as IVIg costs...and with all the other medical expenses...$11,000 isn't all that much.
*sigh* I still don't have that much to pay.
Pain meds are wonderful :) Pain is more controlled. Probably another reason I'm able to try walking around more. I've not needed one of them as often as we thought I might...so, that's a good thing too.
All in all, it's been an okay month as for the polymyositis...if only we could get rid of the medical bills! My insurance company has decided to go back and reverse payments on the last 1 1/2 years of claims to one of my doctors. It has left me with over $11,000 that I supposedly owe to this doctor. I'm appealing it. The doctor's office is appealing it. and, the HR department where I work is looking into it for me as well, but I'm not sure what the outcome is going to me. It makes me really anxious. I hate to owe money to anyone. I guess, though, I could look on a brighter side...with as much as IVIg costs...and with all the other medical expenses...$11,000 isn't all that much.
*sigh* I still don't have that much to pay.
Sunday, August 8, 2010
Pain Management!
Finally! We found a pain management specialist to manage my pain medications. All I can say is "It's about time!" ha.
I'm feeling pretty good today, which is unusual given that my next IVIg treatment is only 1 1/2 weeks away...usually by now I'd start feeling weaker and just "blah" by now. Buy, hey, I'll take it :)
House is up for sale. I've decided to start working on my PhD and have been accepted into the program to do so...So, I'll be busy, working full time, school, being mom...and polymyositis. The PhD program is a new "self-directed" program...it's very interesting to me. Since my body is so worn out by the time I get home in the evenings, I though that this might give my mind something to do while my body sits and rests. I hope this was a good decision. If not, well, I can always call it quits, right? not that I've ever done that!
I'm feeling pretty good today, which is unusual given that my next IVIg treatment is only 1 1/2 weeks away...usually by now I'd start feeling weaker and just "blah" by now. Buy, hey, I'll take it :)
House is up for sale. I've decided to start working on my PhD and have been accepted into the program to do so...So, I'll be busy, working full time, school, being mom...and polymyositis. The PhD program is a new "self-directed" program...it's very interesting to me. Since my body is so worn out by the time I get home in the evenings, I though that this might give my mind something to do while my body sits and rests. I hope this was a good decision. If not, well, I can always call it quits, right? not that I've ever done that!
Sunday, August 1, 2010
August 1
Today I'm feeling a bit on the sad side. Just tired of the every day dealings of Polymyositis, pain, medications, etc.
Earlier this week I went to get a medication refilled only to have the pharmacy tell me the insurance wouldn't pay for it...it's no longer under formulary. I've been on this med for three years now...couldn't the insurance have given us notice? So, I went a week without it trying to get that all straightened out. A week of withdrawal from it as well. Not fun.
I've also decided to put the house up for sale. I'm afraid I'll lose some money on it b/c of the updates (painting/etc) it needs, but I just can't maintain things in it with my limitations. And, living so far from support makes it difficult when crisis happens I(i.e. falls). So, I'll be looking at townhouses and condos closer to work and friends. Financially it will be better, too.
Financially is another things. These medical bills have been such a big hit on me, I'm wiped out...I have nothing left in savings. We barely get by month to month. In fact, I don't know how we do it. On paper, we shouldn't be able to make it...some how we do. I stress about it each month though...and every time another medical bill comes in the mail.
M is upset about moving. She's worried about leaving friends, starting a new school, etc. All the normal stuff for her to be worried about. But, she'll be okay.
I'm constantly worried about A. He's done nothing to start college in the fall. He missed his deadlines for applications. Of course, this is all my fault. He has no place to live. He's saved no money. Despite having free rent all summer (and before that)...no bills, etc. He's blown everything he's earned. Again, his situation, though, is my fault somehow. He takes no responsibility for himself. I worry so much about him, but I just can't have him live back at home.
I still can't find a doctor to manage my pain medications. My rheumy has made several referrals, but we never get calls back. I don't know what else to do about the pain issue. I'm tired of pain every day. Day in and day out. This isn't a way to live.
Earlier this week I went to get a medication refilled only to have the pharmacy tell me the insurance wouldn't pay for it...it's no longer under formulary. I've been on this med for three years now...couldn't the insurance have given us notice? So, I went a week without it trying to get that all straightened out. A week of withdrawal from it as well. Not fun.
I've also decided to put the house up for sale. I'm afraid I'll lose some money on it b/c of the updates (painting/etc) it needs, but I just can't maintain things in it with my limitations. And, living so far from support makes it difficult when crisis happens I(i.e. falls). So, I'll be looking at townhouses and condos closer to work and friends. Financially it will be better, too.
Financially is another things. These medical bills have been such a big hit on me, I'm wiped out...I have nothing left in savings. We barely get by month to month. In fact, I don't know how we do it. On paper, we shouldn't be able to make it...some how we do. I stress about it each month though...and every time another medical bill comes in the mail.
M is upset about moving. She's worried about leaving friends, starting a new school, etc. All the normal stuff for her to be worried about. But, she'll be okay.
I'm constantly worried about A. He's done nothing to start college in the fall. He missed his deadlines for applications. Of course, this is all my fault. He has no place to live. He's saved no money. Despite having free rent all summer (and before that)...no bills, etc. He's blown everything he's earned. Again, his situation, though, is my fault somehow. He takes no responsibility for himself. I worry so much about him, but I just can't have him live back at home.
I still can't find a doctor to manage my pain medications. My rheumy has made several referrals, but we never get calls back. I don't know what else to do about the pain issue. I'm tired of pain every day. Day in and day out. This isn't a way to live.
Tuesday, July 20, 2010
IVIG today
Yesterday and Today I had this month's IVIg treatment. Yesterday, over halfway through the treatment, I developed a bad headache and vomited. It is one of the side effects of IVIg...so, Dr. Lowery had them give me something for the headache through my port. It helped :)
I've not really had side effects of the IVIg treatments, aside from being tired and cranky afterward...easily treated by chilling on the couch in the evening! But, these last few treatments have kinda thrown me for a loop.
Today during the treatment, early on, I started with the headache and being nauseous. Dr. L had them give me pain med for the headache and something for the nauseousness. It helped some, but never got rid of it completely...but it was tolerable. Tonight, I have a tremendous headache, nauseous, stomach cramps, etc...I'm quite miserable and not much of anything I can do about it. I have no pain meds other than tylenol, which has not helped. My other, normal, everyday pain is...well, painful and I've spent the evening in tears in the bathroom so that Mik wouldn't know...I'm just ready for this to stop.
I've not really had side effects of the IVIg treatments, aside from being tired and cranky afterward...easily treated by chilling on the couch in the evening! But, these last few treatments have kinda thrown me for a loop.
Today during the treatment, early on, I started with the headache and being nauseous. Dr. L had them give me pain med for the headache and something for the nauseousness. It helped some, but never got rid of it completely...but it was tolerable. Tonight, I have a tremendous headache, nauseous, stomach cramps, etc...I'm quite miserable and not much of anything I can do about it. I have no pain meds other than tylenol, which has not helped. My other, normal, everyday pain is...well, painful and I've spent the evening in tears in the bathroom so that Mik wouldn't know...I'm just ready for this to stop.
Wednesday, July 14, 2010
ER Visit
Monday evening I took a fall in the kitchen. When I hit the floor, I knew that I had hurt something pretty badly...thinking I may have even broken my hip. So, Mik called for an ambulance...the fire trucks made it first. Nice guys, but wouldn't move me until the ambulance got there. Once the ambulance got there, they got me onto the stretcher...once they moved me off of my hip, that helped to relieve some of the pain...but not enough to make me send anyone on their way! (BTW...ever have firemen and ambulance crew trying to do their jobs when you have a curious 13 year old in the way...and a curious dog in the way??)
I've never actually been in an ambulance before. You know, for someone who is in pain and hurting...I don't recommend riding in the back of an ambulance. If something wasn't broken already, I was sure it would be by the time we got to the ER!!
But, if you want to get a bed in the ER quickly, the ambulance is the way to go...I got in right away. Still felt like way too long before they finally got me pain meds, but I'm not real sure how long it actually was. The good news...the x-rays showed no breaks or fractures. The bad news...I'm in pain and it feels like the bone is bruised. Can that be?
I have some wonderful friends. Tammy and Brian met me at the ER, stayed and drove me home. I don't remember much of that (pain meds working!) Tammy stayed the night to make sure all was okay. Laura from work also met us at the ER and stayed until we left. She was great too...I was glad she was there...def made things easier.
I've never actually been in an ambulance before. You know, for someone who is in pain and hurting...I don't recommend riding in the back of an ambulance. If something wasn't broken already, I was sure it would be by the time we got to the ER!!
But, if you want to get a bed in the ER quickly, the ambulance is the way to go...I got in right away. Still felt like way too long before they finally got me pain meds, but I'm not real sure how long it actually was. The good news...the x-rays showed no breaks or fractures. The bad news...I'm in pain and it feels like the bone is bruised. Can that be?
I have some wonderful friends. Tammy and Brian met me at the ER, stayed and drove me home. I don't remember much of that (pain meds working!) Tammy stayed the night to make sure all was okay. Laura from work also met us at the ER and stayed until we left. She was great too...I was glad she was there...def made things easier.
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