June 22, 2008
Well, it’s the day after my bike ride, and no flare. A little less energy, but NO PAIN. This is amazing!
June 21, 2008
The supplements are definitely helping! Over six miles on my beloved bicycle today, and while that’s a far cry from last year, and an even farther one from the year before, it’s still progress! I had enough energy left over to do a bit of grocery shopping, write this little update, and I’ll be cooking dinner in a few minutes.
Of course, the real test is going to be later– I took it very easy on the riding, and I’m keeping my fingers crossed that I won’t have a flair, but I feel really hopeful. And hopeful is a very, very good way to be feeling. It’s been quite a while!
June 19, 2008
Last week, I was at about my lowest ebb with all of this fibro stuff. The pain had gotten almost unbearable, I was terribly depressed, and– ugh. Just ugh. Stay with me though, it starts to get better.
On top of it all, I was getting these weird and awfully awful cramps in my calves that were making it hard(er than usual) to walk. I was a little concerned so I went to the doctor, who ordered some blood tests, and I’m scheduled to have some sort of test called a doppler next week (to rule out blood clots). I also have to get a mammogram. My boobs aren’t cramping, but he wants me to have one since I’ve never had it done (I know- shame on me), and he probably figured I was in so much pain anyway that we ought to go ahead and add some mammary mashing to the mix. Anyway, Doctor P. said that the calf thing may just be some new turn that my fibromyalgia has taken– another new and wonderful way that it’s decided to present itself. I haven’t gotten the results yet, but in the meantime…
I’ve decided to start trying out some vitamins and minerals to find relief, and y’know? It’s working! Yesterday, for the first time in forever, I drove home from work, and instead of feeling completely wiped out and heading straight for the sofa (which is what I’ve been doing since returning to work), I actually had some energy, and I got a few things accomplished around the house. Wow!
This morning, commuting back to work in Columbus from Dayton, I was feeling so happy and pain-free that I was actually calling people to just say, “Wow!” I felt good, like James Brown. My calves had stopped hurting too. It all made me a little wah-wah, because it’s been so long since I’ve had a really good day. In fact, I thought that there was a strong possibility that I might never have another. Not only was I feeling fairly tip top, but my calves had almost completely stopped hurting too. Woohoo!
I was a little wiped out a few hours after arriving back home, but still… I had several really great hours!
So… for now, here’s what I’m taking. I may change this up a bit, which I’ll explain in a minute.
Twinlab Stress B-Complex Caps
Nature’s Bounty Natural Vitamin E (400 IU)
Source Naturals Fibro Response, which is a combination of malic acid and MSM
Nature Made Magnesium (500 mg)
Nature Made Zinc (50 mg)
Jarrow Formulas Natural SAM-e (400 mg)
SAM-e is supposed help with fibro, but unfortunately it tends to make me a little too energetic at night, and it’s interfering with my sleep. I still have the racing weird dreams (last night’s saga had Ron Howard in it– not Opie Ron Howard, and not bald director Ron Howard, but more Richie Cunningham Ron Howard), and I never feel that I’m fully asleep– I’m always thinking about stuff, or saying things to myself like “Wow– how weird. Richie Cunningham’s in my dream).
Anyway, I’m going to stick it out with the SAM-e for another week or so, because I’m so loving having this energy, but if my sleep patterns don’t improve, I’m switching to htp-5, which supposedly does the same good things, but has almost no side effects.
I’m also looking into a few dietary changes, and I’m trying to gear up to cut out (or at least cut back) on my beloved coffee and my sweet iced tea (it’s a southern thang, ya’ll). Fewer carbs, more fruits and veggies, and oatmeal a few times a week.
I’m so optimistic about all of this that I’m planning to start bicycling again. Two years ago, I was doing up to sixty-five miles per weekend. Last year, that decreased to about thirty-five, and this year, my fibro interfered so much that I almost became phobic about riding, for fear that it would cause more flares. Now I’m feeling like I might be able to handle it. I’ve even ordered a little basket for the front, so I can take the pup along.
So that’s how things stand right now. I’ll keep you posted, but I really hope that you find some of this helpful. Oh, and best of all? That entire bag of these vitamins cost less than a one month prescription of the Lexapro I was taking, and it’s helping more.
(Note: I’m not taking Vitameatavegamin.)
June 9, 2008
I’m having a horrid flare. You know the drill– insomnia, pain screeching through every nerve ending, exhaustion, fogginess. I’ve given up on trying to figure it all out. Well, actually, I’m lying– I’m still trying to figure it all out.
I was up at 4:30 this morning, hurting and sleepless, so I did some searching for fibro information on the Web and found this great site– 100 tips for coping with fibro. I like the author’s route of changing diet and nutrition, and of going “au naturel” as far as medications. I’m going to start taking OPCs, which are a type of antioxidents, and I’m also going to try cutting out foods from the nightshade family for a while to see if it makes a difference. This includes tomatoes, potatoes, green peppers and eggplants. Sigh…no more baba ganouj.
I’ll keep you posted on this. In the meantime, I’d love to hear anyone and everyone’s best tips for dealing with fibro. Here are some things that I can’t do with out, and one thing that I want really, really badly.
Bath Therapy Bath Salts: You can get these at any drug store, at Target, Wally World, etc. A long soak in a bath of this stuff really does help me.
Heating Pad: I named my heating pad Antonio Banderas, which makes me feel a little less old ladyish when I lie on it. I really hate heating pads, but it does bring relief.
Lidoderm Pain Patches (by prescription): Make sure it’s Lidoderm, as some of the others have um, killed people. This is great for dulling pain in a localized area. You’re only supposed to use one at a time, but I often cut mine in half so that I can get relief in more than one place at once.
Massage: Can’t afford this often, but a really good massage therapist can work wonders sometimes. One day, when I’ve one the Mega Millions Jackpot, I’ll hire a live-in personal masseuse. I’ll call him Antonio Banderas, and change my heating pad’s name to Bud or Mac or something.
Love: Being around kind and loving beings makes my life gentler, and often eases things. My boyfriend and my cat make me feel all warm and fuzzy inside, and I’ve recently gotten a new little puppy that sits on my lap and warms my heart. Gentleness really does help combat the harshness of daily life.
Memory Foam Mattress Topper and Pillow: These haven’t helped so much lately, but for a few years there, I would not have been without them.
Osim IMedic Massage Chair: At about $2000, I simply can’t afford one of these, but this chair is amazing. It’s available at Brookstone, and I recommend that you try one out if you have a store nearby. Honestly, it’s fantastic, and I’ve actually driven to Brookstone a few times to use one when I’ve been hurting badly. My reason for this has been to experiment, to see if it makes a difference when I’m hurting a lot. It does make a difference– it really does. Now, if Brookstone would just gift me with a chair in exchange for this plug, I’d really appreciate it.
If I think of any other things that you haven’t heard a thousand times, I’ll let you now. In the meantime, what helps you?
May 4, 2008
The weather changed, and that changed everything. It got cold, and my body started its rebellion. My frustration level rose to new heights, and a few days ago, I struggled mightily with getting up, moving around, and getting my ass out the door to go to work. Seriously, I didn’t think I could do it. I woke up with pain shooting around my body like a pinball, and my exhaustion was enormous. I tried stretching and adjusting my thoughts, because I wanted to keep the focus away from the pain and onto the the fact that it was a new day, and that I needed to get to work. I ended up going back to sleep twice, partly because I was physically wiped out, and partly because I wanted to just wipe the morning slate clean and try again, to see if I could wake up in a more functional way. By the third attempt, I decided that no matter what, I was going to get to work. I finally did– at about 2:00 pm.
This does horrendous things to my thought process. The inner dialog I have is sometimes downright mean. “You’re NUTS!” “You’re weak!” “Think of all the people who are so much more disabled than you. Think of all the people who have so much more on their plates– they all manage to make it into work.” No matter how harsh and judgmental others can be, it’s nothing compared to what I do to myself.
I finally made it in, and as I sat at my desk, I realized that the pain was just not going to go away. I tried to tackle my work while sitting, but my hips, butt and legs felt as though they were on fire. I tried standing up to do it, but my lower back and legs wouldn’t hear of it. I had just driven almost an hour to work, and within thirty minutes of arriving, I knew I’d have to leave. Tears of frustration started welling up, and finally, I went to tell my supervisor that I was going home. I wanted to hide, because I knew if anyone spoke to me, I was going to lose it. Of course, a couple of them did, and I just started crying like a big baby. So we can add “extreme embarrassment” to the mix here. I melted down.
I wanted to be in my own bed, in my own home. I drove to Dayton, and drove back to Columbus the next day.
It seems that my body is calling all the shots these days, telling me what it will and will not tolerate at any given time. I don’t have the fight, the energy or the strength of character to resist it. My brain is unwillingly following my body’s commands, and I hate it.
Many people have Fibromyalgia, and they work 9-5 jobs. Many people do what has to be done, regardless of what their bodies are feeling like. I’m a wimp, and I’m angry at myself for not being stronger. At the same time, I want to protect that little tiny part of me that is hurting, that feels vulnerable, that longs to do whatever it takes to feel like me again.
There’s one thing I know that’s linked with all of this, but I can’t quite figure out how. If I could get a handle on it, I may be able to figure out how to regain some control over my mind and body. At the risk of sounding like a total fruitcake (like that’s ever bothered me before), I want to say that on some level, I’m extremely intuitive. I’m empathetic, and hyper sensitive to whatever mood is in the room at almost any given time. When I’m around people with bad energy, I can almost touch it. It blows me around like a gale force wind. I’ve been this way since I was a little girl.
Fibromyalgia makes people talk. There is gossip and speculation, and that whole, “She doesn’t look sick” thing. I try to ignore it, and steel myself against it. I try to put on my invisible force field, but it’s very worn, and has holes in it.
It’s not my imagination, or at least I don’t believe it is. Before 9/11, I was overcome with depression and feelings of dread like I’d never experienced before. Sometimes, I can just walk by a person and almost get knocked down by something that they’re exuding. The term, “I feel your pain,” has a literal connotation for me. I just feel things in a really strong way.
When I was having my little meltdown, and waiting to talk to my supervisor, I was standing near the cubicle of a woman I will call Mary Jane, a bitter middle-aged woman who wears matching sweater sets and walks around with a hateful look on her face. She complains constantly, and is tremendously concerned about who’s doing what in the office. Although she apparently feels that she’s being given more work than anyone else, the reality is that her workload is about the same as everyone else’s.
She shoots me daggers all the time, and her bitterness makes me feel extremely sad. Everyone is in the same boat here, but we paddle in different ways– we’re all losing our jobs, everyone’s working to tie up loose ends before the contract expires. There’s a sense of sadness and relief and impending instability. People are making the most of it.
Mary Jane however, is angry. Furious. And a lot of her fury is directed at me. She’s like the kid you grew up with who was obsessed with the fact that the other kid got more marbles, or was always chosen first for kickball. “It’s not fair,” you can almost hear her whine.
When I came back to work, she greeted me and asked me how it was that I had returned. “Actually,” I told her, “I think that they were just being extremely kind to me.”
This apparently pissed her off to no end.
So during my meltdown, standing near her desk, Mary Jane asked, “Are you okay?” I was hoping no one would talk to me, and that I could leave without a big to do. I wished that I had the power of invisibility. I told her no, but that I’d be okay, I was just hurting. Standing there, the hostility that was drifting toward me from Mary Jane was making me hurt more. Her words expressed concern, but I was feeling something else.
My supervisor assured me that it was okay for me to leave. She took me by the manager’s desk so that she could assure me that it was okay. I felt like I was being paraded around the room, though that was not the intent. I just wanted to leave, I didn’t want the drama. My supervisor walked outside with me, and I tried to put into words what a hard time I have with being judged and gossiped about. It’s a huge contributor to the flare ups, and it was just bowling me over at that moment.
“Mary Jane is being such a bitch,” I said. “I can’t believe how much she’s changed from when I was here before.”
“Really?” my supervisor said. “I just noticed her expressing concern for you.”
She was right, and I felt terrible for having said anything.
The next day, Mary Jane came by my desk, full of the milk of human kindness. “Are you okay?” she asked again.
“Yes, but Mary Jane, I need to apologize for melting down in front of you. I was just hurting a lot, and I knew if I talked I would start crying, and that’s just what happened. I’m so sorry.” And I meant it.
“Oh no,” she said, “I’m just concerned about you.” She asked me some questions about Fibromyalgia, and said that I looked exhausted. I told her that because of the Fibro, I often don’t get a lot of sleep. “Well, I was just worried about you, and wanted to make sure you were okay.”
Wow. How nice. Apparently, my radar had been all wrong. Beneath that angry exterior was a coworker who cared. I realized that I needed to get my thought process in check– that my intuition could sometimes be faulty.
Within fifteen minutes, my supervisor was at my desk. “Do you have enough work?” she whispered.
“Oh God yes,” I told her, and showed her all of the things I had going on. Believe me, many trees have died to provide me with enough paperwork to keep me busy throughout the day.
“Good,” she said, “because Mary Jane just went to her supervisor and told her that you needed more to do.”
I was shocked. I told her about Mary Jane’s visit to my desk, and of the concern that was oozing from each of her pores; about how guilty I’d felt for misjudging her, and that I’d apologized.
But my intuition had been dead on, and the feelings I was picking up on were correct. A coworker later told me that a couple of weeks ago, Mary Jane had cornered her, grilling her on why I was getting special treatment, and quizzing her on exactly what my medical condition was. She’s crazy-angry, and my presence just adds fuel to her fire, despite the fact that my work has no impact on anything she does.
I’m not kidding– just being around someone like this is extremely hard for me. In my stronger days, I could put up my force field and ignore crazy, negative behavior– in fact, in the past, I’ve held positions where I actually diffused it. Now I’m at a low ebb, and I find that instead of being able to fight it or ignore negative energy, it just sort of gloms onto me and leaves me weaker and hurting more. It drains me of my super powers.
“You know, I hate it when I’m right,” I told my supervisor, referring to my comment the previous day. And I really meant it.
I hope some of this makes sense. This is my long-winded way of saying that I think that there’s a connection between this hypersensitivity, empathy and intuition, and my Fibromyalgia, or at least the flares. Are any of you wired in this way?
Note: I realize that I’m dumping here, but my Fibro blog is my official dump station.
April 29, 2008
I feel horrible. Poop. I get so excited when my body feels better, then WHAMMO! The fibro kind of chuckles and says, “Not so fast there, toots.” Yes, it calls me toots.
Anyway, the weather took a sudden turn for the colder, and I think that may be the reason for this. There is no part of my body that doesn’t hurt, except for maybe a few eyelashes. I’m going to go back to bed, and hope that tomorrow’s better.
April 19, 2008
There are two things I want to share with you.
Thing One: Ruby Shooz over at A Piece of Peace has written this gorgeous post. I found it so beautiful and so true that I printed it off and hung it above my desk. Thought you might enjoy it too.
Thing Two: Kendall left this comment on my other blog:
I just wrote on my blog about my new-born theory that migraine (the bane of my existence) might be a result of over-stimulation…and that led me to wonder if fibromyalgia, CFS, and similar difficulties might also be. I will stick with what I know, which is migraine, but I’d be very interested to have you check what I said on my blog (which is Kendall’s Quest) WHEN YOU HAVE TIME (no hurry!) and see if it resonates for you.
It’s a very interesting post, and I think that there is a lot to what she’s saying. After I read this, I thought about how much worse my fibro has gotten since I’ve been at work. I started pondering how the work itself isn’t stressful at all right now. They are being so good to me there. I’ve been given light work, I stay at a place that is peaceful and has wonderful energy, and I’m getting plenty of rest. Still, my body has been screaming, my exhaustion level is off the charts, and my brain’s been pretty foggy.
After reading Kendall’s post, I realized that what’s different is the amount of stimulation. I commute in rush hour traffic for almost two hours each day. Our office is full of noises, lights, technology, people, hustle and bustle, and although my work is not stressful, I push myself to get a lot done. What’s changed is the amount of stimulation, and I believe that what Kendall’s saying may be a factor here.
A couple of days ago, I was driving home in tears. I was hurting, mentally exhausted and semi-depressed, because when I’m feeling this way, I worry about how I’m going to get through all of this– not just this particular job, but earning a living in general. My supervisor had said earlier, “You’re pushing yourself too hard. You even have a doctor’s note that specifies that you should be working less hours than you have been. Why don’t you come in at eleven tomorrow?”
So yesterday, I did just that. I spent a leisurely morning drinking coffee on the patio of the person I’m staying with. I did my bird/ tree/ sky watching thing. I read a little. I took it very slowly. I slowly packed my things for my weekend return home. Then I went to work, and as soon as I started hurting, I told my boss that I was leaving. I wanted to get home before my pain overwhelmed me, and before the rush hour traffic commenced. I worked a grand total of four-and-a-half hours.
It made all the difference in the world. When I got home, I was tired, but not pummeled. I was not hurting at all. I slept well. And today, I feel pretty good.
Of course, I will never be able to do this type of thing in the “real world,” but this has given me a wonderful opportunity to experiment. I’m going to really start paying attention to overstimulation, how to pace myself, how to start noticing these sensory overloads to see if there’s a connection. I also have to get this balance thing down better.
I won’t be able to do the four-and-a-half hour work day regularly, but maybe I can on Fridays, so that my entire weekends aren’t spent recuperating.
Anyway, it’s definitely food for thought (which has no calories by the way). If anyone has noticed a similar link, I’d love to hear about it.
April 17, 2008
…I feel like a human shin splint.
April 13, 2008
My first few days of work were wonderful and awful. It was so good to see all of my co-workers, and to get so many hugs. They’d actually left my desk intact– I couldn’t believe that it was still there waiting for me.
Half of the department is gone now. This contract was supposed to last a year, but it’s dragged on for almost two. Many people have become impatient about putting their lives on hold, and they’re moving on, finding new jobs and foregoing their severance. The people who remain seem tired and stressed, but still as kind and funny as ever.
I’ve been staying at the home of Kim, a supervisor in the department whom I love. Her house is almost an hour from the office, and it’s just beautiful. I go out on the deck in the mornings and drink coffee, listen to the birds, and watch old dead leaves float from trees, making room for new ones.
My body has not been holding up well through this, but my supervisor told me on my first day back not to worry about anything. She’s given me an unbelievably easy job to do, so there’s no stress involved. She also made it clear that I am to leave whenever I need to, and she doesn’t care if I’m late. “I just want you to get your severance, and to have a proper going away lunch like everyone else.” I heart her.
I have mixed feelings about it all. I’m so thankful for the opportunity, but I’m angry at my body. I’m coddling it, and in a way, so is everyone at work. Stress exacerbates fibromyalgia, but there’s absolutely none involved. I can sit or move around, or do anything I need to do to relieve the pain if it gets bad (including going home). If standing on my head would help the fibromyalgia, they’d provide me with a pillow and the space to do so. But nothing seems to matter. The fibro does what it wants to do, and what it wants to do is wipe me out with exhaustion and send pain shooting through my limbs. I find it all so frustrating. People can see the effects of this written on my face. I don’t want them worrying about me, or having to deal with this at all. It’s embarrassing to feel like a forty-seven year old ninety-two year old.
“I think the worst part of it is the mental aspect,” I told a couple of work friends. “The fact that I can’t control the pain or anticipate when it’s coming or how long it will last drives me crazy.” I try to keep it in the background, but it keeps screaming at me.
There are great lessons in all of this. I’m learning to let go and accept this gift that I’ve been given by the people at work, and to try to do it gracefully. I’m beginning to understand that I will never understand this syndrome, and that, try as I might, I’ll never be able to fully predict what it’s going to do. I’m trying mightily not to hate my body for what it’s doing, but to instead listen to what’s it’s telling me, and to try to obey its orders as much as I can. I’m trying to learn to not be humiliated or feel “less than” because of all of this, but that’s been a little more difficult. Right now, I’m missing the part of me that was energetic and fun. I hope it comes back soon.
Quite honestly, I’m a bit terrified. I will never have an easier job, or one where I am accommodated to this degree. This wasn’t even a full work week, and I’m not holding up well. I’ll try again next week and the week after that, and hopefully, my body will respond better. But this experience has made me decide that I need to think much more seriously about the future, and how I’m going to survive financially with this uncooperative body of mine.
April 13, 2008
This post is from my other blog. I’ve decided to post it here too, because it has a lot to do with fibromyalgia. From time to time, I’ll be writing follow-ups to this story on this blog and I wanted you to know the back story, so that it would make sense. So here it is:
Angels Angels Everywhere
Of all the great mysteries in my life, the one that has always puzzled me most is how fortunate I am. Things can get stinky bad, but really, the number of incredibly good people I’ve known and the kindnesses that I’ve witnessed have often left me feeling amazed and hopeful. Of course, when I’m on the receiving end of the goodness, I feel amazed too, but it’s mixed with a sense of being undeserving. Maybe that’s the Catholic maternal/ Jewish paternal genetic double-whammy, or some Wayne’s World “I’m not worthy” thing, but it’s true. When it gets right down to it, no one owes me anything, and the good stuff is just icing on the cake. I’ve gotten so much icing, and I can’t for the life of me understand why. This isn’t some sort of false modesty, it’s just fact. Over and over again, just when I feel that I’ve reached my lowest ebb, something wonderful happens.
My supervisor e-mailed me last week to see if we could get together, “to discuss business and because I miss you!” I missed her too– we hadn’t spoken for months. She is one of the feistiest, smartest people on the planet, and I learned so much from her. Unfortunately, my physical health dwindled considerably while I was working for her, and I felt less competent and productive than I ever had. I took a leave of absence last summer, thinking that I’d rest and regain my strength, but I never did. What started as a short term leave, ended up being forever. I felt exhausted, depressed and embarrassed, and when my long term disability claim was rejected by the insurance company, I didn’t appeal their decision. I had grown tired of jumping through hoops trying to prove my case, and of struggling to retain my job, because the more I fought, the worse my condition became. I’m embarrassed to admit that I gave up. Not just the job. I gave up my self-esteem, my identity as a competent worker, and my refusal to succumb to Fibromyalgia. While I was with this corporation, the department I was in was outsourced. Most of us became contract workers, and there was a severance package involved at the end of the assignment. So, I gave the severance up too.
I e-mailed my supervisor back and told her that I had a doctor’s appointment in Columbus on Wednesday. We agreed to meet for lunch afterward.
“So what are you two going to talk about?” Tom asked.
“Well, I imagine that she has to ‘officially’ fire me at some point,” I told him. “So, we’ll get that over with, and then we’ll just catch each other up on life.” I was mentally preparing for it. Although I knew I was already canned, I promised myself that I wouldn’t cry when I heard the word “termination.”
We met. We hugged. We ate. We talked. She did not terminate me, although she very nicely offered it as an option. She also said that I could resign. But what she wanted me to do was to try coming back to work, not even for the entire length of the contract, which is probably sometime in July, but just until the end of May, so that I can collect my severance.
Okay, I’m crying. Hang on a second.
Okay, I’m back.
I told her that my body may not allow me to work as long or as steadily as I could before, but that I really wanted to try. We discussed the fact that I no longer live in Columbus, and she said that she’d check to see if she could find a place for me to live during the week. I said that I’d check around too.
The following morning, she e-mailed me back. A supervisor and a co-worker had each offered me places to stay, and another one offered today (I’ll still come home on the weekends).
I know I’m not explaining all of this well, but things have been so crazy this past week, and I’m kind of rushing through, trying to explain.
Here is the short version:
Just when things seemed that they couldn’t get much worse, I’ve been offered an opportunity to work for a few weeks at the job I held before my Fibromyalgia got so bad. We need the income, and if I can make it through to the end, I’ll have a small amount of money which we can use to move. If possible, I’m also planning to earmark a small portion of it for a teacup pup!!!!!!! It’s not a lot of money, but right now it seems like a fortune.
Time after time, this woman has gone to bat for me. She’s not only my supervisor, but my friend, and she never gives up on me. Her actions, and the fact that others have offered to open their homes to me overwhelms me. My coworkers are incredibly sweet. No one gains anything by doing all of this (in fact, they’re giving up some things). It’s just kindness, pure and simple, and it makes me feel very humbled and emotional.
See what I mean? I’m not kidding about all of the “Touched by an Angel” stuff that happens to me. I’ve been so lucky to have known so many angels.
Obviously, my life’s going to change drastically for about a month and a half. I’m not sure how often I’ll be able to write, but I’ll post when I can. I’ve been reading your blogs, but my brain’s been a little too scattered to comment right now. I promise, I’ll play catch up soon. The people at work aren’t the only angels I know.
I’ve got to go start packing.
Note: The guy in the photo has nothing to do with any of this. I just love the picture.