2010 Review

Well, its' been three years. Actually Jan. 1st will be three years to the day that I came home from the hospital. Sometimes I get frustrated with the limitations I have, but if I sit and think about the progress...there really has been, esp in the last few months. My CPKs were normal for two months (Sept and October). November was a little high, but not too bad really. Lab was drawn this morning, so I'm hoping that will return to show it as normal too.

I ran the vacuum for the first time in three years. I had not had the strength to push it. But, I was able to do so about 2 months ago. you know, I really don't like to vacuum. ha.

I've been able to walk more. A little longer over time. I still get tired, though. It still boggles my mind how I can walk from the bedroom to the living room and feel like I just ran a marathon! Hopefully it will continue to get better.

I still hate the weight gain that came with all the medications! I sure wish I could get rid of some of the excess weight.

Overall, I guess it's been a good year as for Polymyositis, even with the setbacks here and there.

EMG results

I had an EMG today. I didn't think it was necessary, but the new neurologist wanted it done. She is questioning my diagnosis. Doesn't matter, evidently, that I had a biopsy done and it confirmed my diagnosis. I also questioned the need of an EMG b/c I'm on all the medications which has decreased the inflammation, etc. So, there wouldn't be evidence of inflammation. But...I spent an hour being poked with needles and being shocked.

The EMG showed evidence of myopathy. Myopathy is characteristic of Polymyositis. Of course, new neurologist doesn't want me to have PM, so she goes on to say that she thinks it is Steroid myopathy. Sure, that is possible. That doesn't mean I don't have PM. So, she says she wants me to have another biopsy done. I think I have to draw the line a surgery. There is no need for it. I know what my diagnosis is...I'm responding to treatment. Yes, I know I need to get off of the Prednisone and my doctor has been working on that.

I returning to Dr. Lowery. I like having a doctor who listens to me and believes what I say about my symptoms.

Distal muscles

Polymyositis affects your proximal muscles (those closer to your trunk, hips, shoulders, etc). That's been typical for me as well. Though when at my worse I did have some weakness in my hands...I couldn't open things, my handwriting became bad, etc. But, that improved over time as well. Lately, though, I've been having pain in my hands and fingers. By lately I mean several months, but it seems to be getting worse...or it feels worse to me. Making typing harder to do...I keep having to correct things...and, it simply hurts.

I'm kinda tired of the pain. I don't like taking pain medication all the time, yet I don't particularly like being in pain either. If I thought the pain meds were a temporary thing it would be one thing...but this is obviously not a temporary condition.

Prednisone side effects

I think I've experienced all the side effects of this hellish drug. I have the moon-face, the horrific weight gain, high blood pressure, problems with blood sugar, acne, etc.

But, the food cravings. Okay. Now, if I'm going to be hungry all the time, why can't I crave food that is actually even semi good for you? All I want is sugar-filled food or carbs! I can't eat much at one time, but then I want it all the time! all. the. time.

Even when I'm feeling nauseous, my brain is wondering where the next brownie is coming from.

All that and it doesn't even work all that great for me.

...ologist

Rheumatologist
Pulmonologist
Cardiologist
Neurologist
Immunologist
pain person...what are they called?


Have I left any out? Might as well add them to the list now while I'm adding, right? blah.

Neurologist on board

I haven't seen a neurologist since I was diagnosed. This new doctor (wonder when she'll become just "my doctor"...Dr. Lowery is still holding that status in my head)...anyway, this new doctor has referred me to a neurologist. Interestingly, it took her a month to get the referral made (she's definitely on the slow side), but once she made it, they got me an appointment within the week! What's interesting about that...usually it's a good several months to get an appointment in that clinic. So, Monday morning I see a new neurologist...not the one that initially saw me and thought I might have PM.

I'm not sure the point of seeing this neurologist. What are they going to do that's any different from what I'm doing? There's nothing different treatment-wise we can do.

But, I'm going to the appointment monday. Like a good, compliant patient. Wouldn't want to deprive **** of making any more money off of me. (okay, so I'm still a little bitter about being forced to change doctors.)

Feeling lost

Yesterday I finished my November IVIg treatment. This was my first treatment with my new doctor. The infusion clinic staff were super nice.

But, I just want to return to Dr. Lowery.

Thing is, when I was with Dr. Lowery, I knew exactly where I stood as far as my health...CPK levels, etc.

This new doctor, she didn't even order lab work. I have no idea what my labs look like. Have no idea how high my CPK levels climbed to before I had my IVIg this month...so, how am I suppose to know if I can decrease the steroids this month or not?

She really hasn't a clue how to treat ME.

I need to figure out how I can return to Dr. Lowery.

In the meantime, I'm about out of pain medications. The pharmacist has faxed the refill request to the doctor twice in the last week and the doctor hasn't replied. I've called the office twice and am told to have the pharmacy fax in the request. So, yeah. Things can never be simple, can they.

I'm sick of all this.

and, I'm already sick of holiday stuff.

You look so Good!

"You look so Good!" "You are doing so well" "You must be doing so much better, you look great!"

First...thank you prednisone, but I'm over 50 lbs heavier than what I use to be. I need to lose at least 30 of it to be in a "normal range"...my hair falls out, my nails are brittle, I get bruises if you look at me wrong and my face keeps breaking out...I know I don't look great! But, yeah, I know that's all physical.

What you don't know is how hard I work to not LOOK like I FEEL all the time. I feel like hell. I'm tired. I'm in pain. I'm nauseous quite a bit. I can't lift a gallon of milk to put it into the fridge. I can't lift the jug of Tide (or whatever I use) to wash clothes. I have trouble getting out of bed by myself on some mornings. Getting dressed in the morning exhausts me before I ever leave the house.

BUT...I LOOK GREAT! So, I must be doing better. Right?

Good days just lead to bad days

Last weekend was a nice weekend. I was feeling pretty good. I woke up not feeling tired...first time in a long time I actually felt rested. I cleaned house and went to the grocery store. I most all afternoon and put a few meals in the freezer. That was Saturday. Sunday was church and hanging out with Mik. Monday through Wed. was work. I got home late two nights (later than usual, but not really late). I had today off (holiday)...and woke up tired and hurting. I ran some morning errands but was home by 11:30, put dinner on the stove to cook for the afternoon and then crashed on the couch. Tired and hurting. My hips feel like my bones are grinding together. My back muscles are painful and in knots.

IVIg is scheduled for Thurs and Friday of next week. I hope it can get this back to a bearable level.

Normal ends again

This new doctor calls me yesterday to let me know that my CPK has gone back up.

So, I'm no longer in the normal range. But, she's not sounding overly worried about it. It's not that much over the high end of normal. However, I expected it to be high as I've been feeling some slight increased weakness here and there.

They also have yet to call the insurance to get my IVIg approved. I explained to her, again, that I need to have it 11/18-19 to remain on schedule. I don't think this doctor seems to understand that by missing a treatment my CPK starts rising fairly quickly and my weakness increases quickly. I can't miss a treatment. Why would she understand that, though, she's not treated severe PM before...she has no experience. (grr. insurance)

new doctors, starting over

Since I work at the same facility that my new doctor works, I was able to pull strings to be seen sooner. So, tomorrow I see my new doctor for the first time.

I'm trying to think of the positive things about this. Here is one...the new doctor is just down the hall and down one floor from my office. So, I won't have to be gone from work much to see the doctor.

She's never treated polymyositis.

I still want Dr. Lowery back. Her office called me with results from my labs, following my IVIg. My CPK levels were a bit higher than last month, but still in the normal ranges. That's two months in a row! So, I get to decrease my Prednisone again :) yeah! And, Dr. Lowery said I can always come back to her if we get insurance worked out.

2 months, normal CPK

2 months in a row of normal CPK levels. Yeah. The CPK this month was higher than last month...but right at the level to be considered normal. So, this is a good thing. I can try to increase PT exercises without causing more muscle damage.

Of course, CPK levels are only part of Polymyositis...but, it's taken three years to get it in the normal range. so, yeah!

I've been really fatigued. Dr. Lowery thinks that is probably due to decreasing the prednisone...just my body adjusting to the change. She said we could go slower on the taper. No way! I want off of that stuff so very much!

Got the official word from my insurance company. I won the appeal, partly. They are going to go back and pay Dr. Lowery through November of this year. But, after that, I have to find a different doctor. So, Dr. Lowery looked at the list they provided me. There were 6 names. One of them doesn't practice anymore. one of them is a pediatric rheumy. The others are at the facility where I work...there is a 4-6 month wait to get an appointment. She's going to try to get me in under an emergency basis. I can't go without treatment a month, much less 4-6 months. I really, really do not want to change doctors. Anyone want to donate the $5000 for out of pocket expenses so that I can stay with Dr. Lowery?

My strength does seem to be getting some better. That's a good thing. No where near where it was, and I think that there is some damage that won't be able to be reversed, but there's improvement none the less.

Some Improvement!

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.

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.

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 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!

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.

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.

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.

Another Diagnosis to add to the Mix

I received a letter in the mail today from my PCP (not my rheumy) regarding the Bone Density test that I had done a bit ago. First my rant...why send a letter to your patient to say that there is something wrong? What ever happened to the phone call? I know some doctors make them b/c my rheumy does, whether it's good or bad news. Oh well. She (rheumy) also doesn't wait over a month after the test to tell me what the results are from a test.

Anyway, that rant is over. So, I have bone loss in both hips and am at risk for hip fractures. I have Osteoporosis. Nice, another side effect of the prednisone.

Alone Time

Maybe I should get better at updating this thing.

M has been away at her summer camps and youth group trips, leaving me home with the two dogs. So, I'm quickly reminded of how much I rely on my daughter to help me around the house to get the little everyday things done. My arms/shoulders are too weak to lift the garbage bag out of the trash can to take outside. I have trouble walking up and down the one step going to the back yard in order to water the plants and give the dogs water outside. Getting wet clothes out of the washer feels like I've been working out for an hour or so...and the list goes on. I miss M. (for other reasons too!!)

Today has been a hard day with pain. *sigh*

Rituxan Fails

I had lab drawn this morning at 8:30. I just hung up the phone from the doctor's office. She called to let me know that my CPK levels have spiked again. Rituxan isn't working for me. So, back to IVIg treatments every month, and Imuran, and Methatrexate, and all the other meds I'm on (last count there were 23)

Interestingly enough, on my way to get the lab this morning I was thinking about how much better I felt over the weekend. I mean, I had quite a bit of pain, but I didn't feel quite as fatigued as usual.

1st round of treatment over

The first round of Rituxan treatment is over (two weeks ago). The days of treatment were fine really. The first time I had a headache and my blood pressure dropped pretty low...other than that I slept the treatment away. The 2nd infusion I had a headache, some low blood pressure and that's about it. Now, I'm fatigued, my muscles ache and my CPK levels are still elevated. *sigh* Maybe it just needs more time to work.

I'm still having trouble getting a physician to prescribe my pain medications. I ran out about 1 1/2 weeks ago ...both pain meds. I'm tired of being in pain all the time. This is miserable.

Rituxan

The drug manufacturer has agreed to donate Rituxan for a year. So, as soon as it is delivered I will start that treatment.

"Vacation Time"

I took a week off of work! It is the first time I've taken any "real" time off of work since being off for all those months in 2007/08 when I was first diagnosed. I had planned on taking Mik out of school for a couple of days and just going somewhere ....anywhere. But, I had totally not thought about her having benchmark testing at school. It was okay, though. I was so tired all the time, and I really did need to be able to have some time to just rest. Ha Ha. I'm not sure that I actually had that rest time! I had a week of NO doctor's appointments! Can't remember the last time that happened. The carpets got cleaned :) yeah, no more doggy smell! Terminix again says we are termite free for another year. The yard didn't get done, but the guy that is suppose to do it says w/in the next 3 weeks I'll drive home and see a beautiful yard. And, last but def not least....my windows are clean...on the outside. Thank you Tammy. Don't know how much she enjoyed cleaning my windows, but I enjoyed spending time visiting with her. Of course, Mik and I did spend quite a bit of time together....and we spent too much time at Walmart. I need to go back to work just to stop spending money!


As for a myositis update...well, there really isn't much to say. We've made a request from the makers of Rituxin to provide the drug free of charge since my insurance has refused to pay for it and has denied the appeals.
I did get a new PCP. Very nice lady...I really liked her...esp when she wanted to prescribe something she said that she needed to call my Rheumy first to make sure it was okay. :) She did a bunch of lab work and then I got a call saying I was anemic and my B12 was low, so now I'm on iron pills daily and B12 injections daily.
My swallowing studies came back...guess what...my muscles are weak. Duh! Did we have to do the studies to come to that determination? I believe that is what I said when I went in for the appointment. Anyway, the doctor prescribed Reglan....4 times a day. I've not read good things about this drug...so, I have not started it yet. I want to wait until I can talk to my other two doctors that have been with me since the beginning of this journey, and that I trust. I have appointments with both this week.

And, that would be it for now...

Swallowing difficulties

Another problem without Polymyositis could be swallowing difficulties.

I've been having problems with this for awhile now, and it seems to be getting a bit worse. So, this morning I'm off to see yet another MD about this, at the recommendation of my Rheumy. Truthfully, I'm not sure the point. I mean, we know its a muscle problem...I see no point in doing a bunch of tests/etc just to be told what we already know.

But, off I go anyway...

Rituxan denied again

So, I had a long chat with my doctor this week. Insurance denied, again, for me to have Rituxan. My prednisone is back up, still on Methotrexate and Imuran...and, of course, IVIg each month. Despite it all, my CPK levels are still too high. They are not extremely high, as they have been in the past...but, physically, I weaker, tired all the time, etc. But, there are so many factors to take into account. Not only is the CPK high, but I've been on prednisone so long that my doctor thinks that may also be contributing to the muscle weakness. Also, the avascular necrosis...while the x-rays don't show it, this is also something my doctor thinks I may be dealing with. She wants to do an MRI as soon as I tell her to go ahead and do it. For now, though, if I'm taking all of the pain medications on schedule and not walking much, the pain is tolerable...so, I'm not going to bother with an MRI until it's no longer tolerable and we need to do something different.

We did talk about not working. Essentially going on disability. It is rather tempting, but my job...it's more than a job to me, always has been. It's my career...It's who I am. I've already had to give up so much of who I am and what I do due to this disease, that I'm not sure I'm ready to give up my job. I'm so lucky to work someplace that has worked with me to make sure I have everything I need to do my job and to take care of me (ie medical appointments). I'm torn, though....and, I don't know how we'd survive on an income of disability. Besides, I think you have to wait like two years to get health coverage (medicare) once you've been determined disabled. So, what do you do in those two years?

So many things to think about and consider...

2 in 7 Million

Because of where I work, I have access to some of the latest medical journals/etc. So, recently I started looking through them and reading various things about Polymyositis and some of the most recent research. I read in one of the articles that there are 2 cases in every 7 million (approximately) people diagnosed with Polymyositis.

I guess I didn't realize how "rare" polymyositis is. I mean, I've read online of other's stories...and there does seem to be plenty of us out there.

A few days ago I had to have a biopsy done b/c during one of the "routine" cancer screens I now have to do annually came back abnormal. The doctor, trying to be reassuring, said not to worry, "it's not common for women your age to develop this type of cancer."

I wanted to yell at him...don't tell me what's "common" and not common for me...I mean, if "common" meant anything, I wouldn't be living with Polymyositis now!

Another unknown world

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.