Ups and Downs

So much has been going on this week. Had yearly mammogram that had "areas of concern", so had to repeat it. That lead to ultrasound. But, in the end it seems that everything appears okay. I just need to follow up and repeat again in 6 months.

Had a fall in the bathroom. A couple of close calls else where. I seem to have become the clumsiest person I know. I trip over my own feet...like I'm not picking my feet up high enough or something? Dunno. But, I let Dr. Lowery know about it this morning.

So, anyway, had my first day of IVIg for the month. This evening my body aches something awful. I hate it when I have this kind of side effect. But, I'm glad that I don't have the migraine that generally comes with it.

Dr. Lowery thinks that when we get my CPK levels back from today's lab, they will be elevated. :( She did the muscle strength tests that she does and commented that she thinks I'm weaker than last month. I made some face, indicating I didn't like her assessment...so, she redid the muscle strength tests and said, "yeah, same as what I just did" There's still a chance she's wrong and the CPK levels will be normal. I'd like for her to be wrong this time. :)

She also thinks that the tingling and numbness that I'm getting in my hands and feet are likely neuropathy. Having an autoimmune disorder does increase your risk for it...but, I'm really not sure what you do about it.

Daily Living made easier

Daughter is sick this morning, so we're missing church. I'm having time to sit and think...that is sometimes not a good thin! ha. Anyway, I was thinking about the things that have made it easier over the last few years to get things done...so, maybe this will be useful to someone?

Of course, my electric wheelchair! That wasn't even an option. I know that it wouldn't be affordable for many people, including me. While I was in the rehab hospital, they arranged for me to get this...it was necessary for me to be able to return to work; therefore, it was paid for through a Vocational Rehab grant of some sort. So, check through the Voc Rehab in your area! My wheelchair was equiped with everything that was needed: tilt, a seat that raises, lateral support, arm support things (like these technical terms?), etc.

When I returned home from the hospital a friend gave me an electrical toothbrush and an electrical can opener...lots of energy savers there!

Dressing sticks to pull up pants, etc...can also be used to help get clothes in and out of washer and dryers.

These plastic non-slip discs that I use in the kitchen (well anywhere really) to put things on and it keeps them from sliding around.

Reachers. Very important. I have three or four of them.

Raised toilet seat! (insurance paid for this)

Shower chair, hand held shower (insurance paid for the shower chair)

Walkers...I have a couple of different kinds...I use them depending on what I'm going to do. There is a tray that will fit on the tray that will fit on the walker that comes in very useful that will be very useful in getting things around the house.

A lift chair. A friend gave this to me, so I have no idea how much it cost...but very invaluable as I would have not been able to sit on any furniture...well, I would have been able to sit on it, just not get out of it!

I'm sure there are other things that I'm not thinking of right now...so, I'll add to later! Maybe even add pictures to explain some of my technical terms.

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.

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.

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.

"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.

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)

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.

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.

When Life Revolves around numbers

It feels like my life revolves around the numbers that come back on my labs. Labs tell me how much medication that I'm going to have to take for the next week. Then, labs again. Then, adjust meds. and the cycle continues.

I'm accepting, starting to accept, that this will just be life for now on...life with Polymyositis.

Accepting it. Not liking it. In fact hating it more and more each day.

Polymyositis

Never heard of it until it changed my life.

An autoimmune disorder that left me...well, dependent on others.

It's hard to believe that I'm in the 9th month of having been diagnosed. I know that I've come a long way. I can walk again, albeit with a cane or walker, only for short distances, and my gait is not normal. I can lift my arms over my head now, just can't hold them there. I can dress myself, cook meals, etc...it all takes me a lot longer than it use to take me and I've had to learn ways to compensate for things I can't do (such as sitting down to pull slacks on b/c I can't lift my legs)

Still can't get up myself when I fall. Still can't do stairs well. But, at least I can stand up from my own couch now. Still can't lift things that are too heavy (i.e. a gallon of milk).

I should be thrilled at the progress. And, I am. I know that I've come a really long way in the last 9 months. But, it still bothers me to hear people say how well I'm doing or how well I look, etc. I am well compared to 9 months ago. I am not well compared to 10 months ago...or a year ago...or any other amount of time.

My doctor told me that she really didn't think I'd ever walk again...that the damage was too much. So, in that respect I should be thrilled that I can walk, even with a walker or a cane, for short distances.

But, I want so much more back.

This polymyositis has changed so much. My physical limitations are just part of it. The medications have changed my appearance and have caused mood swings (depression and anger both). I am clumsy now. I am more forgetful, or so it seems to me. Easily irritated. Fatigued all the time. So many things that just are not me, but now they are.

I don't like anything about the person I've become b/c of this diagnosis.

And, I can't say this to anyone b/c ...well, b/c I *should* be thankful b/c I'm doing so well and much better than anyone ever thought I'd be doing.