Thursday, February 28, 2008

Wow 3 posts in 3 record LOL

Cinders had so much wonderful information in her comments to my last post, I thought I would just respond to them in this post so here goes.

I'm not so sure that I've listed all of the meds that I take daily, thus far. I've mentioned them separately but here goes the list....

-CYMBALTA 30mg daily. This is a "two-fer" does double duty helping with depression as well as pain control. I love it, it did wonders for my pain.

-TRAMADOL 50mg every 4-6 hours...technically I should only be taking four a day but usually it's more like 5 with extra strength TYLENOL as well

-AMITRIPTYLINE 50mg at night, which is also a mild anti-depressant, but I take it to help me sleep.

those are my fibro meds....I also take DOSTINEX twice a week for a pituitary tumor, PRILOSEC daily since my inactivity with the fms has contributed to me blowing up like a whale (whole different topic), and last but certainly not least I take MAXALT for frequent migraines.
Sometimes I feel like I'm a walking pharmacy here....ack. I like the idea of a morphine patch, if it would cut through the pain in my legs...but that's a big step and one I don't want to be taking while I'm working. The good thing is that I can bring all of this info to my rheumy appt in March and see what he would suggest. I know that the lady that referred me to this doc. said that they experimented until they found the right medication fit for that sounds very promising.

Next on the hit list is EXERCISE which goes right in line with my weight. I'm really struggling in this area right now, and I'm not sure what the block is for me. I've been losing weight with the help of a bariatric doctor and have done quite well. But I've taken a break from it for the last month or so, in order to get my head into the right place to make it all work together and stick for good. I'm done with going up and down all the time, and it sure as hell isn't helping my body any. Exercise is my biggest obstacle right now. It seems sooooo hard to stay on track and keep up the motivation. I start work at 6am so I can't workout before work, which in the past has been what's worked for me....instead I've been trying (using that word very loosely here) to go after work. The problem is that by the time I get off I'm soooo friken tired and the pain has really kicked it up a notch and the last thing I want to face is doing something physical. I've got a free weeks pass to a local gym that has a warm pool as well as a cold pool and it sounds like that might be helpful from what Cinders has done. so thanks Cinders I will definitely try that out this week.

I've thought about a tens unit,but haven't gone so far as to purchase one, it's on my question list for the rheumy though. Like I've posted before, our jetted bathtub and our new heated mattress pad have gotten me through alot of rough days! yea!

It's so nice to hear someone else's experiences and what does and does not work for them.....that's why I started this blog in the first thanks Cinders for your comments!

I have a link to Cinders's site in the left hand column of this blog, check it out it's really good!


Wednesday, February 27, 2008

A new day dawns....

So a new day has come and I'm not feeling so "rant-ish" today; Lucky for you! LOL

Today fms has brought complete and utter exhaustion, which isn't all that surprising given everything I have on my plate right now. I'm trying to just ride it out and to identify it as it is....and for today all it is is fms. It's not me, just the disease. It was VERY hard to get out of bed this morning, and when I did everything just hurt....but here I sit and its early evening and I made it through the day, with my wits somewhat intact.

The good news is, and I don't think I've posted this yet, is that I have an appt. on the 19th of March with a rheumatologist, here in Anchorage, who specializes in FMS. Yea! I'm really hoping that he can help me manage the disease better than I am now, since I'm really struggling right now. I heard about this guy through a lady that works in the same building as me, obviously she has fibro too. I'll update you on the results.

I'm also still struggling with my torn back muscle, which if memory serves, I mentioned a few posts back. The frustration is it takes so much longer for muscle's to heal with's a long and slow process....heat and Tylenol are good friends. I also bought a couple of those adhesive warming patches. I'm not entirely sure that they help fix the muscle problem, but it sure does decrease the pain, so I give them 2 thumbs up. I'm open to any and all suggestions though.

I'll keep it short and sweet (debatable) and sign off....I'm just trying to get into a habit of posting regularly.

until next we meet!

Tuesday, February 26, 2008

I'm in rant mode today (blink blink)

So here's the deal, I've written and re-written, and edited and re-written this stupid post several times at this point, and I'm having a really hard time getting my feelings down in words. As I've posted before my husband and I are in the middle of trying to decide whether or not I can feasibly stop working at this point and time. I firmly believe that I'm at a point where I can see the difference in the quality of life that I have when I'm working vs. not working, with fms. I have gradually over the past few years gone from working well over full-time hours, to now only working 30 hours a week. When I have time off the difference that it makes with my body is amazing. Not that I have more or less pain, fatigue, exhaustion,etc...but when I'm not working I have the time and freedom to take care of my own needs when I need to, and not to try and work through it because I have no other option.

Granted this is only a decision the my husband and I can make, but I have brought the topic up with several different people now, just to get their perspective. Sadly what ended up happening, is that I've found out that there are a few people out there that obviously don't get how much this disease affects not only my daily life, but those of my husband and son's too. I'm not sure why this bugs me so much, but it really really does.

I want so bad to communicate to people the devastation of this disease without being looked on as faking it....or be pitied because of it. When you are healthy you take for granted that those people closest to you will be there for you no matter what, but when you become sick, you really find out who will and will not stick by you. I'd like to say that it doesn't bother me what others think of me, but deep down inside it does, and I'll get over it. It's just another dynamic of being chronically ill that isn't talked about as much as the symptoms are. My husband and son are totally amazing and they both know exactly what fms looks like at home. I know that they would be just as greatful as me, if we found a way to make things work in our home without me working. When it comes down to it....their opinions are the only ones that really matter!

There's also this fuzzy line of how much of the impact of the disease do I share with people outside my immediate support system. I'm not ashamed of having fms and I have no problem being open and honest about my disease and the toll that it takes, but at the same has to really pick and choose who to share this information with. Not all employers are supportive, not all friends and families know how to deal with such a big change in their loved one's life/health. I was diagnosed with this disease in may of 2005....well we moved to Alaska in August 2005 so really none of our immediate family has been around me much to see how my life has changed. And of course I shoot myself in the foot anyways, by trying to not let my disease impact others, so I try to "tough through" things, or say "everythings great" when it really isn't.

In that respect I'm just as much to blame as anyone.....this is so fricken huge and overwhelming right now. I know in my heart that what I need to do is quit working....but it isn't that easy and it's going to take some time to get to that point. So in the mean time I need to figure out a way to make all the different facets of my life mesh together....regardless of how outsiders see me or my family. But easier said than done.....hmmm i'll have to ponder this for a while


Friday, February 8, 2008

just checking in

I've been a real slacker when it comes to the blog lately, but I'm trying to get back into the swing of things. I've been really tired lately. That get up in the morning and all you want to do is take a nap for about the next week....sound familiar? well that's me. Through some unforseen circumstances I had 2 and a half days off of work this week and it really really helped to get rested up. It's amazing what a difference sleep can make. That sounds like a really obvious thing and a stupid comment to make, but I'm serious. I remember back to when I switched from a night shift job to a day shift job, how much better I felt, and how much clearer I could think. Well the same holds true for fms, you don't realize how exhausted you are until you get some rest. Sometimes I'm amazed at the level at which I've been functioning without realizing that I'm exhausted mentally and physically.

It's hard to keep that perspective when you're in a bout of pain, or exhaustion, or more frequently than not, in a bout of pain AND exhaustion. Then on top of that throw in the typical fibrofog and it's amazing we get anything done at all? This makes me both laugh and take a serious pause at the same time. It's the constant struggle to find some sort of balance with your body, when the fibromyalgia keeps changing the rules. Just when you think you have it figured out, something changes, and you are thrown off kilter (no idea how to spell that one), only to start at square one again. As I'm typing this I'm laughing because this exact situation happened this week and I didn't even realize until right now, what took place.

Like I said I had a couple of days off this week and was able to catch up on some well overdue sleep. I know I've said it before but our bodies are not able to get enough restorative sleep with fibro. The key to that fact, for this story that it's during that ever important sleep cycle that our bodies repair our muscles. Over the day we get tiny tears, especially from working out, and then at night our body repairs these tears, thus creating added muscle. Well I've been trying to work out regularly lately, but this week was an off week. When I woke up yesterday and sat up, I felt the muscle from my neck down past my shoulder blade (for lack of a better term) rip. It's wasn't like a spasm, it either tore completely or pulled itself to a major extreme. Well of course this was tear provoking painful, but now after a day it's only worse because now it's stiff, AND my body isn't getting the proper rest to repair the muscle, which is why I have chronic pain in the first place......yikes! This happened about a year ago and when I went to the doctor there wasn't much she could do since I'm already on so many pain meds to begin with. Long story short....I just have to live with it and hope it heals itself soon, with lots of heat and tender loving care. ack! It's funny though that when one situation got better, the rest helped my exhaustion, then another thing jumped right into the mix (stupid muscle).

This ramble takes me to another point, and that is...that I just found out recently that Tramodol, which is one of the pain meds I take is actually considered a narcotic. It's an extremely low dose narcotic, but a narcotic all the same. YIKES /OMG / WTF... I know it doesn't change anything really, but I was under the peaceful illusion that I was managing my fibro without narcotics....crap so what now? If i'm on narcotics I might as well get a stronger one since this one just barely covers the pain gap, most days. I supplement it with extra strength tylenol several times a week.

****note to self***** must speak to doc about this!

Can you tell that I'm in a real funk with this dumb disease right now???? Part of me wants sooooo bad to just quit my job and take care of my body.....but then my next thought is.....then I'd have the time to workout like 4 hours a day and get my body in the best shape ever.....but come on......that doesn't even make sense....if I'm able to work out 4 hours a day then I should be able to work 6 hours a's so frickin confusing. I just want to feel better, but I have no concept right now, of where to start. I wish I could focus on the regular things of life. You know what I mean? Nobody grows up thinking "I hope I get a chronic disease, when I grow up", but sometimes it's just all too overwhelming. It's not often that I think "why me"....but today I ask you...."WHY ME?". Then I feel stupid for writing that, because I know that everyone has there own challenges in life and I'm no worse off than most....It's like having the devil on one shoulder and an angel on the other....this sucks.....suck it up.....I hate it.....what's the big deal...and on and on and on. Maybe I have multiple personalities???? lmao....just kidding.

So folks that's where I am today....nothing profetic or wise or even insightful to say. I wish I had something new for you, but it's just another day with fms. Maybe my problem is that I'm trying to find an answer on how to deal with I don't have to deal with it anymore.....hmmm I don't think that's going to