Check out these cool blogs/sites
- Raising Asperger's Kids
- Well, you look good?!
- the fibromyalgia spot
- As the Dove Coos
- Chronicles of Fibromyalgia
- What Comes Next
- Sherlock's Stuff
- In Sickness and In Health
- Learning to Live With CFS
- jasmine's cove
- body of work
- But you don't look sick?
- The Blog Blog
- FibroTalk Support Community
- A Stellarlife
- Cinders Muses about Knitting, Fibromyalgia and life in general.
Friday, December 21, 2007
I have 10 days off over Christmas and I'm soooo excited. I can't even remember the last time I had that amount of time off. My husband is home from work, he works 2 weeks away and then spends 2 weeks home. So we get to spend some much needed time on our own for a week before he goes back to work. Once he leaves I'll have 3 glorious days on my own, which is VERY overdue. It's nice just to have time to recharge and not have to worry about anything. Stay up late and sleep in late, that's my kind of holiday.
I've been really achey the last week or so...not sure why, there probably isn't even a reason, fibromyalgia does what it wants when it wants so I'm just trying to roll with it. I don't like having to increase my pain meds though. I'm lucky that I only take Tramodol, which is non narcotic and non habit forming. I can also augment it with Tylenol...which has been pretty standard over the last few days. I find this stuff comes and goes, I'm just glad I've been off for the last 2 days, cuz it's awfully hard to concentrate with radiating pain all over. My in-laws gave us a heated mattress pad for Christmas....it has individual controls on each side MAN LET ME TELL YOU....it is truly amazing....it's like a giant heating pad. I've spent an hour each of the last three days just laying on the bed with it cranked on high, it really really helps. not to mention the fact that it's so very cool to get into a nice warm bed on a cold winter night.
I highly recommend one for anyone out there, fms or not...it's my new favorite toy.
Not much else to say, i'm not feeling overly chatty or inspired today, so I guess I'll wrap up this entry and catch ya later!
Tuesday, December 11, 2007
I'm sure I've mentioned it before but people with fms suffer ALOT from being exhausted. Our bodies don't enter the restorative stages of sleep and thus can't heal themselves and refuel....it sucks so much to wake up and feel more tired than when you went to bed the night before.
It makes concentrating during my work day a challenge.....lol....luckily the people at work can laugh it off with me. Even that though, is a double edged sword. The main 3 people know that I have fibromyalgia, but they don't really know what that means, and they seem uncomfortable to ask. I haven't really broached it with them because I don't 1. want to push it on anyone, but 2. and more importantly for me, I don't want to sound like I'm whinning, complaining, or even making excuses. That's one of the big pitfalls with fms, is we don't LOOK sick in the least so people don't believe that we really are suffering. I think too, at least in my case, I get good at trying to keep up appearences and then just collapse when I get home, which isn't very healthy either.
It's quite a balancing act that I've gotten myself into. You can sense when people feel uncomfortable when you're talking about the disease, but on the other hand I want to increase awareness at the same time. So for right now anyways my tactic is to explain it if asked....or like now have a very personal tattoo that keeps me strong, but also allows for some sort of dialog when someone asks about it. But as predicted I'm a work in progress, and the struggles that fibro makes me face everyday, are ever fluctuating and changing. As are as evidenced here, my emotions and feelings toward this damn disease. For right now, anyways, I'm reasonably comfortable with how I'm dealing with and coping with the disease in my everyday life...but go figure....nothing stays static! poop!
that's my thought for today....may you all have a wonderful day !
Sunday, December 2, 2007
As I'm typing this I'm wondering if it sounds like I'm always complaining, cuz that's honestly not my intent with this blog. On the other hand this disease is relentless and it's ALWAYS present in some way shape or form. My wish is to capture these moments when they happen so that those who are fortunate enough to not have this disease, can get a glimpse into what it's like to live with fms....and two that other fibromites cand hear, see, feel that they are not alone. We all have commonalities, even if the only common thread is that fms is completely unpredictable.
does any of this make sense? This is kind of like having a conversation with myself...which isn't all bad for me....but yikes now people have a glimpse into what goes on in my mind! lmao....scarey isn't it....insert gasping laughter here....
Migraines have been another concern for me lately (yes I'm jumping all over the place)....I've had some of the worst of my life! I've started working out at the hospital, and I'm hoping that will help relieve some of this mysterious pain...and cut down on the migraines. Nothing like blinding head pain...to knock you right out.
ok.....so i'm jumping all over....and seem to be having a hard time communicating any logical sequence of thoughts....not sure why...but the fog is ever present today....which yes is another symptom....jump....bounce....jump.....hey look a turtle.....jump....bounce.....ok enough is enough.
Tuesday, November 20, 2007
I'm much more easily frustrated than I've ever been before, and once I get angry it's at a much more intense level than ever before. It's all so subjective though. It could simply be the demands of ever growing responsability at work, becoming a wife, and parent....or on the other hand it could be that I resent this disease and have no tolerance where it's concerned. I just know that my anger is definately different than it's ever been before, and I've heard others echo the same concerns.
That's the hard part with fms; it's so far reaching into every aspect of your life and your health, you just don't know what's normal and what's not. I know that before my diagnosis, I was convinced that all the pain that I felt was simply due to getting older and not being in my 20's anymore. But let's get real here I'm only 38, which in my opinion, for what it's worth, is just not that old.
There's all these things about my body that have just become normal to me, and I don't realize that they're not "normal" until I hear someone else ask about it, or even worse: when I'm talking about it to someone else that doesn't have fms, and they are looking at me like I'm from outer space. lol yikes! For instance I have random muscle "jerks" "spasms" "ticks" i don't know what you would call them. When I'm sitting still or especially laying down to go to sleep, my leg or arm or both will all of a sudden jump. It's kind of like those dreams you have of falling when your almost asleep and your whole body jumps, except it's just in my legs and arms. Well come to find out, someone on Fibrotalk posted a question about this very symptom, and tons of people report the exact same symptom. It's weird.
This week so far is going pretty well though. I'm really tired but not in bad pain, which I count as particularily good. I've started going to the gym at work....today was my first major work out. I did cardio and lower body weights, so we'll see how I feel in the next few hours. Exercise is supposed to help curb the symptoms of fms, but exertion causes undue pain and fatigue. The key is to get to the point where the benefits of exercise start out weighing the negative side effects. I'm remaining optimistic at this point.
I've lost 30 lbs in the last couple of months, but have kind of stalled so upping my exercise is the next stage to losing more weight. It's definately an uphill battle. I committed this year to getting my body back on track and as the year draws to a close, I am definately happy with my progress.....just keep trucking on, as they say!
Thursday, November 15, 2007
welcome to fms folks
Wednesday, November 14, 2007
hanging my head in shame....
A couple of people brought up the same issue that aplseed did, about not wanting to be seen as just the disease. For me though it is a way to remember that it is just a disease and it's part of me like a tatoo, but it's a long way from who I am as a whole. I'm not sure why it symbolizes that for me, but it does, and I guess I'm the only one who has to like it and live with it....and I do. The minute it was all finished I knew I'd made the right decision. It's a huge part of my life and part of the problem with this disease is that we don't "look sick", we look perfectly normal and healthy, so people can sometimes jump to the conclusion that it's "all in our heads" or that we just want the "drama" of it all.....which is sooooo far from the truth.
The most positive change for me, has been to start focusing on raising awareness, and not being afraid to admit to/or let someone else know that I DO have a disease and it affects everything that I do. I'm proud to be the person I am, and I'm proud that I have found a positive outlet to focus on with my FMS as opposed to always looking at the negative and how it takes away from my life. Writing this blog and wearing my tattoo with confidence allows me to work WITH my disease and not AGAINST it.
So for those of you who don't like it or think it was the right thing to do, I very much appreciate your point of view and thank you for helping me to explore all these things before I got the tattoo, but know that it's the right fit for me and that's all I can do right now. ...the next right thing for me!
love you all!
Monday, November 5, 2007
FMS. Does that make sense? I have it and I live with it and I'm even impacted by it almost every minute of everyday.....but that doesn't mean that it's taken over and I've lost me. I'm still the same person I was pre-fibro, I just have more hurdles to jump now.
This perspective is easy to keep when I'm feeling good, however when I'm over tired, in chronic pain, and my senses are on overdrive it's hard for me to keep that positive perspective. I wear one of those rubber bracelets ( like the yellow LiveStrong ones), the main one for FMS is purple (cool color) and it says "Fibromyalgia is real" on it. My newest idea though is to get a tatoo of the purple ribbon that symbolizes FMS for me. I know that alot of people feel that tatoo's aren't the way to go, but it's a way for me to remember, that while FMS is a part of me....it's not all of me, and it also opens up for conversations about what FMS is, with others.
I'm just kicking around the idea right now, I have Thurs/Fri off this week so I'll see what the possibilities are then. It may just be my birthday gift to myself....who knows. I'll keep you posted.
My feet haven't gotten any worse with my new shoes/orthotics so I guess I'll count that as good. Other than that my symptoms have been reasonably mild the last week or so. The weekends are always a time for me to catch up on my sleep...and let me telll you I take advantage of that.
I'm not feeling real chit chatty today so I'll post again later this week.
To all my fellow fibromites....I hope you are all well, and if not.....at least taking care of yourselves!
Monday, October 29, 2007
ON HER NEW.....DESK JOB!!!!
That is just soooooo damn cool. I've been blessed to have found my position and I know that it is a huge relief to not have to worry about a physically demanding job! Way to go girl! You rock!
Also I would like to thank my mom, who was kind enough to respond to my blog. She sent an email and it made all the difference in my frame of thought!
Sunday, October 28, 2007
In any case this is a place where I can vent and say what I need to say, so I guess I'll just keep doing that.
Since buying my new shoes I've only really had today to see how they feel, but so far so good. This week will really be the test though. So now I'm splining my wrist as needed and wearing supportive orthotics 24/7....quite the cripple I've become....
I'm just gonna stop here because, this is sounding really negative, and quite frankly that's wear I'm at right now. I hate being sick, I hate hurting, and I can't stand that my body has become my enemy and the one thing that I CANNOT rely on.....so here's hoping all the other fibromites out there are feeling better than I....or at least know that you are not alone!!!!
trying to take good care....jan
Thursday, October 25, 2007
ever know who you are, not that I get why that would be a problem. This blog is extremely important to me and I'd like to know that it is making some sort of difference, in somebody's life besides mine. This is a great place for me to vent my feelings, ideas etc. and it has helped me share some of the daily struggles that those of us with fibromyalgia go through.....I think I can speak for most people that have this disease and say....one of the biggest problems we face is the lack of awareness about FMS; AND the lack of support that we feel from those who are close to us. I don't expect gushing emotions and testimonials....just a few simple words to let me, and the other fibromites that visit this blog, know that you are tuning in. That's all I have to say about that! blink blink blink
Today has been a weird one, I've kind of trapped myself in my head, thinking self defeating thoughts about this dumb disease. As some of you know, I was diagnosed with fms when we couldn't find any treatment to help my plantar fasciitis (heel spurs). My body's lack of response to treatment was a big red flag that there was more going on in my body than just foot pain. Well in March 2006 I had surgery on both my feet, and they've done wonderful! up until this week, sigh. I noticed on the weekend that one of my heels was kind of tender and now there's no denying it....they hurt. So I went out today and spent another 200 dollars, that by the way we cannot afford, on new shoes and orthotics. I'm so fricken scared that I'm going backwards! My doctor told me that if my pain came back I'd be that 1 in a hundred that the surgery wasn't a permanent fix for! Of course I would be! So I'm trying, quite unsucessfully to not panic, I'm taking every precaution with them and doing all the right things.....pleeeeeeeaaaaase let it get better and go away! I'm having trouble with my wrist, and I'm pretty sure at this point that I have Carpal Tunnel Syndrome....and that's just going to be another 10,000 dollars down the drain. I'm so tired of what this disease is costing me, emotionally, physically, family wise, work wise, and mostly money wise. I have insurance and I'm still paying monthly installments on my last surgery. It fricken sucks!!!!!
So now the key is to not stress, cuz if I stress, I'll be in more pain, and if I'm in more pain, I'm less able to cope, and then my health spirals.....and on and on and on....
Wednesday, October 17, 2007
Living with this disease it's easy to forget just how MUCH stuff we deal with everyday, on top of the everyday living experience. I'm starting to see a clearer picture of why I'm frustrated, have very little patience, constantly feeling overwhelmed....well it's simply trying to adjust to my disease and integrate it into my everyday living. I can't keep up the same pace anymore....the hard part is some days I feel reasonably good and forget that "reasonably good" for me means moderate (not severe) pain, tired but not (drop dead exhausted), clear thinking (not in a total fog)....before fibromyalgia...my current "good day" would have been a nightmare day!
It always comes down to perspective doesn't it. I noticed that my family thinks I have super sonic hearing, because I'm constantly asking them to turn down the TV, talk in a quieter voice etc. In reality I'm oversensitive to ALL noise. What's sitting quietly on the couch for my husband is for me.......
the dogs nails clicking on the tile floor, the kids outside yelling and playing, the furnace running, the dishwasher banging, the pencil my husband is writing with scratching on the paper AND the TV on. ...
I hear all of these things at what to the rest of the world would be 8 on a scale of 1-10....10 being, your ears bleeding it's soooo loud. If it was just one thing I'd be ok...but I hear all of these things, and on a bad day, I feel totally bombarded and overwhelmed...it would be easier to have 5 people screaming in my face, because then everyone would know why I was frustrated. It's these weird little things that crop up, that amaze me daily, that this has just become normal for me......and I'm not sure if it's good or bad....it just is, I guess.
it's all soooo very weird! I'm rambling I guess...I'm sure I had a point to this...but for the life of me I can't remember what it was lol lol lol lol
anywaaaays, check out the NFA website if your interested! take good care my fellow
Sunday, October 14, 2007
There are some things that are very predictable about FMS, and then others, more often then not just crop up out of the blue. I wonder why that is? Is it the lack of serotonin that makes our brains sense pain differently than everybody else...or is it that I'm just weird? I dunno! :)
It's been a week of ups and downs everyday held something different. At least I can't say that this disease is boring...lmao! What to do what to do?
Saturday, October 6, 2007
Last night for example I went to bed around 11pm....I got up around 8:30 this morning...took about a 30 min nap around 11am and then had a BIG nap this afternoon...it's almost 9pm here and I could easily go to bed and sleep all night. When I was healthy, I would one: not been able to sleep that much, and two: if I did manage to sleep like that I would have felt horrible for over sleeping....but not now....since I don't get enough of the "regenerative" sleep...my body is in a constant state of exhoustion. I can sleep 8 hours and wake up more exhausted than when I went to bed. This is a VERY common symptom in FMS and is one of the big diagnostic symptoms.
It's weird how you get used to it though. I can't even tell you how many nights I've sat up with a book, on my puter, watching tv, even listening to Bret snore....it's just one of the constant daily reminders that I have FMS and this disease is not forgiving....if you don't take care of your body....you suffer, plain and simple.
On good days like today when I'm recharging, it doesn't seem so bad, but if this happened on a Wednesday...I'd be done for. Obviously napping all day isn't an option when you have to work and when it happens in the middle of the week it's really hard to catch up. That's one of the wonderful things about my job is that I get off at 12:30 most days. It's just when we're shorthanded like right now, that I work a full 8 hours....
I only work 2 hours less a week than I did in the NICU but because of the hours, and my ability to "recharge" during the week that this position makes the difference. In that respect fate really dealt me a break by allowing me to find this position.....if only it paid better....lol
Well I'm off to play some games....hope all my fellow fibromites are doing well....and a big thank you to those non-FMS'ers that are proactively reading this blog...I hope that it gives some insight....
Sunday, September 30, 2007
The worst bouts though, can be brought on by stress, and for me this is very much the case. Within about an hour of getting angry, upset, arguing with family, staying up a little too late, pushing myself just a touch harder than I know is safe.....the pain will hit my body. Which sucks, but what it's taught me is that I have to put myself and my health first! I've always tried to put everyone else in my life first, and not ask for any help when I've needed it.
The same can be said to be true with my disease....I haven't talked about it much to others because I've not wanted to look vulnerable, weak, disabled etc....But all this has been to my detriment, because the more I work towards being as healthy as I can be, the more my body reminds me that I must put me first!
So this is a good thing, I have my ever faithful companion FMS at my side to remind me to slow down, rest, ask for help, be peaceful....whatever is needed at the time. I heard recently a lady that was speaking about feeling like it was her job to take care of everyone else in her life.....she came to the realization though, that it wasn't that she was necessarily "taking care" of them, but rather "focusing" on them.
This thought really rang true for me...it's easier to focus on others so that I'm not left worrying about me. Where do you learn to make yourself a priority? I must have missed that class...or memo...or newscast what ever it was.
So my focus this week is to make sure that I get what I need to get done, done, and that my family is taken care of...but not at my expense, and more specifically my health's expense. I can't be a good employee, wife, mother, daughter, friend, sister, etc etc unless I have my best self to put forward....so that's my goal for this moment....and hopefully the next moment....I'll keep you posted.....
take GOOD care of YOU!
Tuesday, September 25, 2007
splinting and icing but doesn't make much difference yet.
i'll keep ya posted....off to bed, I'm exhausted!
Saturday, September 22, 2007
Wednesday, September 19, 2007
I recently got the book "Taking Charge of Fibromyalgia", it gives a good outline of symptoms/criteria for diagnosing the disease so I'm going to borrow their good work...lol
their definition reads: "history of widespread pain for at least 3 months...Pain on the left and...right side of the body. Pain above the waist...and below. This includes: cervical spine or anterior chest or thoracic spine and low back pain"
Most common symptoms listed are:
listed as frequent symptoms....but in my opinion they are common symptoms....
-joint pain/restless extremities particularly legs
-difficulty with concentration/short term memory
-decreased painful sound threshold
Now to be fair the list goes on for pages, I'm just highlighting what seems to me to be the most frequently mentioned symptoms when I have conversed with other's. These definately give an overview of my personal symptoms.
When typing them it seems like an extremely long list! ick...the sad part is, that it is just the basics of the disease, as it affects everything in your body and how you function in general.
I'm so scared that by posting these types of things that I will only scare more people off. I guess what it comes down to is that I'm pretty uncomfortable with sharing vulnerable parts of my life...it's one thing for Bret and Lee to know the dirty truth of this disease and how it affects me, but it's a totally different proposition to be posting it on this blog with no control over who sees it.
that's the whole point right? If I don't take the risk, then I can't expect the general public to understand this disease let alone how it affects those of us who have it.
So I'll leave you with the plea to take this information in, and not be judgemental, rather supportive of anyone in your life who has FMS. Second, PLEASE leave comments so I know that this is at least reaching more than just "aplseed" and myself....lol....if nothing else it's proving to be rather cathartic for me....(blink, blink, blink)
Monday, September 17, 2007
Without you guys life would sure be alot scarier. It is absolutely amazing to find a place where EVERYONE knows exactly what you're talking about. Sometimes when I try to explain how FMS affects me or makes me feel, I get the feeling that either the person is uncomfortable hearing about me being "sick" or that they just don't get it.
On the flip side though I don't know how anyone really could get it without feeling it. My immediate family gets it (for the most part) because they live through it with me daily...but people that are more removed don't really understand....which is ok too.
I'm rambling, but my point here is...that FibroTalk is a life saver! Thanks you guys!
Sunday, September 16, 2007
1. it's impossible to do our best in our jobs
2. once we get home, we are essentially useless
3. for me anyways, all of time off is spent sleeping and recouperating so I can make it through the next day of work.
4. we can't be totoally present for our families
5. my social life sucks because, even when I do reach out and make plans to do something, unless it's spur of the moment I can't guarantee (sp?) that my body...let alone my brain will be healthy enough to follow thru.
I know that my husband struggles too, he wants so much to help, but he can't do it all himself, when it comes to cooking, cleaning, etc. I'm certainly NOT the person I was 10 years ago, and while some of me is better, I'm certainly lacking my same over achiever, go get it attitude....
i'm right there with you....I wish there was a quick and easy cure.....on second thought it wouldn't even have to be quick and easy.....just simply a cure.....
Saturday, September 15, 2007
We can ALWAYS be worse off. Conversely, the opposite is true, we can always find something good to focus on as well. All these theories seem so simple in concept, but in the moment in the reality of a situation, it seems a daunting task to remember to step back and look at the whole picture.
Fibromyalgia strikes in the moment, and you never know from minute to minute how you are going to feel. It's easy to get stuck in the circle of always waiting for the other shoe to drop...this disease can have a cruel sense of humor. I think it's key to have time alone each day to meditate, center yourself, pray...whatever you subscribe to....to focus on the big picture and to be in tune not only with your body, but to make that body connection link up to your brain too. All too often I've thought myself into a problem that didn't/doesn't even exist...what good is any of that????
All I know is that typing this and putting it out there for anyone to see, is terrifying and freeing all at the same time...I've always taken pride in my ability to hide what's really going on with me. I never want the whole truth out there, but one of the biggest problems with having this disease is that sooooooo many people are completely ignorant and unaware of it's existence. You can't tell by looking at someone if they have FMS, and lots of people have been judged and told that their dramatizing or making shit up for attention. It simply isn't true! This disease takes over and has some devastating effects, they just aren't visible....so it's my belief that even if only one other person reads this....at least I've spread the word.
So to anyone that reads this...just take note and understand that this is a real condition, and it is life altering, but it doesn't have to be life halting...to my fellow fibromites...stand strong and try to keep the big picture in the frame...don't zoom in!
Wednesday, September 12, 2007
Over the last 5 years I've slowly been scaling down my employment in a few ways:
1. I've changed how physically demanding my job is. I've gone from EMT, to Respiratory therapy, to desk job in a NICU, to desk job in a calm and quiet dept. in the hospital. All of this inspite of the fact that I absolutely LOVE working with medical emergencies.
2. My hours have also changed dramatically. 24 hour shift to 12 hour shift, to 10 hour shifts, to five 8 hour shifts per week, to four 8 hour shifts/week, and now finally to five 6 hour shifts per week.
3. I've gone to high stress, adrenaline pumping work to, answer phone calls and log them (maybe a tad simplified, but you get the idea)
Now at the time of each change I've come up with ways to convince myself that I wasn't doing it because I have FM, but rather the schedule is better, or the hours work with my son's school or whatever, crap I want to feed myself with.
The brutal and honest truth is that my body can no longer handle stress of any kind, AND it most certainly will make me pay, if I work more than about 25-30 hours of even the most calm and mundane job, a week. So all of this is leading to a point...really it is.
Starting this past Monday (oh my god, that's only 2 days ago), one of my co-workers is off work for 6-8 weeks to recover from knee surgery. So I am doing her job and my job, which has taken me to 8 hour days, and I'm not even getting everything done. So now it's day 3 and I'm a mess, physically, emotionally, and spiritually. I hurt so bad I can't even stand it! The fibro fog has hit my brain like a brick wall ( nothing in nothing out), and my tolerance for ANY LITTLE THING has gone out the window. I can't sleep, eat, think, rest, coexist....i'm pretty much beat up. I hate the fact that I've become this pathetic...I used to be able to do anything I put my mind to, and now....well,....what? I dunno? I feel lost, let down, angry, frustrated...blah blah blah.
It is so defeating to not be able to use your mind and body like everybody else. Like the body I had ten years ago...i can't even describe what it's like to be trapped in this shell. I know there are people out there that have way bigger challenges, and medical issues; but by the same token, this is what I live with, day in and day out.
you know how you feel when you have the real icky flu, you ache all over and it hurts to have a blanket on your skin...right now that is multiplied by 10,and you get how I feel physically. I won't even get into my lack of brain function.
I just want to be normal again for one day! please....please....please....
it just feels like there's no point to any of this, but I have to work, and I'm not bringing in enough money to help support our family...what is the answer????
the answer is there is no answer, I just have to suck it up and deal with the hand that was dealt to me....which of course I will do....just cuz that's what I do? is there really any other choice? nope?
so to the blogging world i bid you a restfull night of sleep, if I can't have it somebody else sure should....lol (pathetically)
Wednesday, August 29, 2007
First we started with basic store bought insoles and taping my feet. No big change. Next was individually made orthotics, taping my feet and anti-inflamatory drugs....nope, there was a minor improvement but by the end of a twelve hour shift in the hospital...i couldn't even walk unassisted to bed at night. Next was cortisone injections directly into the bottom of my heel. Only one word describes that experience OUCH! but the did admittedly improve my foot pain, that is until the steroid wore off in about 3 weeks. I ended up having 3 doses of injected steroid, which by the way, is the max! Next was orthotics, taping, cortisone, icing and Physical Therapy...same as before. I had a reasonable drop in my pain but the minute I stopped it was like I'd never had any treatment.
So finally I was sent back to my family doc and after much testing, poking, prodding, blood giving...I was diagnosed with Fibromyalgia.
Since then, hmmm, well I'm not sure if it's been an uphill battle or a downward spiral but either way it's been HARD. Such a simple word to use, but no other word really describes it. This disease sucks! It attacks at will, and you never know from day to day, hour to hour, what your health is going to be like. I have my good days....but right now it feels like there's alot more bad than good......
to be continued