Saturday, April 16, 2005

The Broken One

The label is fitting, but as with any label, it sucks anyway, fitting or not.

Yes, I'm broken. I'm damaged. I am 35 and I have the body of a 70 year old, minus the wrinkles. (Thankfully, wrinkles have stayed at bay.)

One moment, please. I need to find a good solid piece of wood to knock on.

I have mentioned, already, that I have fibromyalsia with bursitis complication. One of the horribly sucky things about fibro is the path to diagnosis. First they rules out all the arthritis issues: Osteo, rhuemotoid, etc. They have to rule out Chronic Fatigue Syndrome. Blood work and x-rays and poking and proding, and not the good kind of poking and proding you'll find in my books.

And the bursitis, I think, was the worse. I fall to the ground, my hips literally giving out on me, screaming in pain, attempting to be moved by the EMTs. I have to endure the broken-glass-shards in my hips to show them my limited range of motion. I have to endure the x-rays, pleading for something to take the neverending pain away. And the result? A shot in the hip (paralyzes the muscle) and a set of crutches. And the first time I heard the word that will forever be used in defining me: Bursitis. Thanks SO much.

I'm to the point now in where I keep a cane or one of my crutches in the van (yanno, the one with the handicap plates) because my fear is that I'll collapse at Walmart, writhing around on the tiled floor, having mortified faces looking down at me. So when I'm walking around and feel that little "give" that signals hell is about to descend, I know the cane is out there, waiting. I do not want to be defined as handicapped, although I'm beginning to realize just how handicapped I really am. Denial is my friend.

So, since having been officially diagnosed, I've realized I will never return to the workforce, as my condition is apparently going to continue in its deterioration. My medical cocktail makes me even more exhausted, and I can't take it if I plan to drive more than an hour because I fear I'll fall asleep at the wheel. On those days, once I get to wherever I'm going, I'm pretty much a couch for rest of the day.

Now why am I writing about this today? For those that know me, I have a four (almost five) year old that I lovingly refer to as Syd Vicious. She finally saw a child development specialist today. While talking about HER, the doctor asks me, "What anti-depressant do you take?"

And I stared. Totally caught off guard with the question. I finally managed to squeak out, "How did you know I take one?"

"You're broken, aren't you? What do you have?"

WTF? How could he KNOW this?! I'd never met him, never spoken to his office, and since it wasn't a medical visit, there was no history to fill out on Sydney. Fighting back tears that my pain is obviously so freakin' transparent, I say, "Fibro, with bursitis complications." He nodded, like that was his guess before I said anything.

Apparently I have more than the classic symptoms for fibro. That's the one that the antidepressants are for. And he, a specialist, could see it. He asked who my psychiatrist was. I said I didn't have one. He said I needed one, and asked me how long I'd been living with chronic pain.

Whoa. Back up. We're here for SYDNEY, not to shrink Brenda!!! Freaked me out, but maybe there's something in me that caused Syd to be the way she is. Maybe it really does fall squarely on my own shoulders. So I answer him. "Since I was 13. It started with TMJ and has progressed since that point."

"That's a lot of years to deal with chronic pain."

Blinking back tears, I nod. "Yes, it is."

So he hands me a paper, and on it is written down a psychiatrist he recommended. Great.

Syd, he believes, is not a victim of Asperger's, which was my uneducated guess. Apparently, she is a victim of genetics. She has her father's "Social Anxiety Disorder", extreme "Seperation Anxiety", shyness to an extreme, and possible bi-polar disease. Now where did she get THAT from.

Take a wild guess. ~eye twitch~

I do not feel like I suffer from bi-polar disease. I was diagnosed as having that when I was 18 (please refer to the incident with Dr. Dickson in the Romeo and Juliet post). BUT, I didn't get really mucked up until they SAID I was bi-polar and put me on Prozac and freakin' LITHIUM. THAT is when I kinda went mental. I told this specialist that, and he laughed. He said that was common, that when someone who is bi-polar gets medicated, the symptoms get worse.

Well HELLO?! That doesn't give on much incentive to BE medicated for it then, does it?! Duh.

I still do not think I'm bi-polar. I think years and years of chronic pain have just made me a So, I come home and tell my ever supportive ~sarcasm inserted here~ husband (B) the details of the conversation, and that Syd will most likely, at the ripe old age of 5 (she turns five in two weeks) be put on Zoloft. Ugh.

And if you read this blog (God bless you're bored little heart) then you know that lately I've been walking through mud. I can't function well, I can't scrape up any energy at all! To counter that, I've cut back on my medications, all of which list "tiredness, sleepiness" as a side-effect. But THAT, in turn, makes the bursitis wickedly bad. I cannot win for nuttin'.

So I'm talking to B, trying to explain all of this to him, and I say what guilt I live with. While he's out mowing, I just want to crash on the couch. He said, "You've always been like that, even before the medicine."

Yes, I know! I don't need him to tell me. I've ALWAYS been this way. My dad and I used to get in fights, because I'd come home and sleep. My father is finally starting to understand the depth of my condition, and actually apologized to me (first time EVER over ANYTHING) and said, "I just didn't know."

Well, no one did. In 1983, we barely had info on TMJ, and my mother still had to fight the insurance to say it was NOT cosmetic. Fibro, I don't think, remotely existed. So how were we to KNOW? We didn't. Brenda was just "lazy". Heard it all the time.

And I guess that gets me, finally, to the heart of this post. I am broken. When I attempted part-time work at Walmart three years ago, they literally called me "Brenda, yanno, that broken one", because I couldn't help zone and bend over and put things away. After a 4 hour shift, I could barely walk at all. That's when I realized I couldn't do even part-time. I am broken.

And I'm telling all of this to B, who I still don't think quite understands it, or refuses to understand it. Yes, my house is a mess. I cannot...CAN.NOT. bend over repeatedly to pick up after toddlers. I cannot haul laundry back and forth. I cannot stand for long periods any longer to cook big meals. Do I WANT to be this way? Of course not. Do I LIKE to tell my toddlers to be careful climbing on Mom, because they HURT me. I don't like telling my babies that they cause me pain, but at the same time, they need to be aware of how they move on me, or I cry out in pain. AND IT SUCKS.

So B says, "I guess I'm used to living with pain." I'm sure (at least, I hope) he did not mean that in a way to attempt to downplay what I was telling him, how I was trying to get him to understand how fibro and bursitis play together. Like I DO NOT know what it's like?! He hasn't lived with it for LITERALLY 23 years. I HAVE. Does he think I want to watch my life and the lives of my babies float by while I'm laid up on the couch?

It's like being labelled again, but instead of from my parents, it's from my husband. I think he thinks, like they once did, that I'm simply lazy. And that's where the guilt comes flooding in. Yes, it IS easier for me to sit here at the computer for two hours than it is for me to mop the kitchen (I can't even do that at all anymore.) Yes, I can type all freakin' day, but after two loads of laundry (with six in the house, there's a constant flow of laundry), I'm done for the day. I got Cooper's room picked up and drawers and closet straighted out and organized, and that was it. No other cleaning, no cooking. It took all I had in me to do that little bit. And worse yet, I was PROUD of what I'd done.

I think he thinks I sit here all the time because I want to be online. I do want to be online, but there are other things I'd like to do, too. But I CAN'T. It's not a lack of desire, it's a lack of ability.

And would anyone understand? Is it just him? No, it used to be my dad. Would another guy have such problems with it? Would they understand that my jaw is broken, my hips are broken, there are things I just cannot physically do that I did when we met. Will I forever live with guilt over what I can't do? Will I always feel inadequte like this? It's a progressive disease, and I can absolutely tell a difference between now and just two years ago.

So B says, if you're still in pain, if you're still exhausted, stop talking the meds. Yes, I'm still exhausted, but some days are better than others. Yes, I'm still in pain, but not a blinding pain like it was. I don't need his constant reminders of how messed up I am. Have I failed him? Probably. Would I fail another man? Probably. After all, who would want to be STUCK with me when there are non-broken ones out there.

So yes, it's a label. And I wish with all of my being that it didn't fit me so damn well.

I've just started on my journey. 23 years of pain, yes, but just now working on the causes of the condition and the techniques used to deal with it. And already, I find that I travel this road absolutely and 100% alone. I do not believe he understands it, but worse than that, I don't believe he has any desire to.

Good thing I enjoy my own company.

Is love enough? I don't think so. I need compassion and empathy, an ounce of understanding. I need someone to say my pain is real and is justified, and my dazed state of medication is understandable. I need someone that will shelter me, even if it's just from myself, and whispers in my ear, "Lay down and rest, I'll make it all okay, baby."


D said...

I'm sure you've covered all of this before, but having had some history with chronic pain I thought I might bring these up on the oddball chance it might help.

Even a few years of pain medication can cause the body to crave being medicated, even from so called non-addictive ones. Have they rotated you through different families of medications or just the usual increases in doses of existing ones?

It also might be easier, especially if being on the computer isn’t too rough to search out information and treatments others have found helpful. There is always at least one online support group sponsored by a medical college or hospital that has forums were people in the exact situation can answer questions doctors can’t (because they have not been through it themselves) and can offer encouragement and a sympathetic ear when everyone else fails to get it.

And the last thing I can offer is if you do decide to see the psychiatrist, hopefully he will give you both a group and private setting to let out the stress of chronic pain. The group helps find common ground and to help realize that you are not alone after all (and having a friend who understands that pain, like one who understands writing can help when you need someone to talk to) and the solo sessions for you to get the tools you will need to help past going to him, since this won’t just go away and their isn’t a magic pill.

Brenda Bradshaw said...

I've only just recently started the medication, so no, I haven't rotated anything out. I've been on this only since January. I go have an appt with my rheumotologist on the 26th, and there are several things I'm going to bring up, including weight loss (I found something I will try if he won't help me) and breast reduction. Those with fibro have severe shoulder pain, and having these things attached doesn't help. We think insurance will cover the proceedure.

And I loved your post, and I could feel the concern in your tone as I read. Now if only I knew who you were, I'd feel all that much better, knowing whose heart was reaching out to mine with help and advice.


Olga said...

Brenda, I'm so, so, so sorry. I understand you very well, maybe because I have my own pain to live with (though I have to admit, not as terrible as yours, and my dh is supportive). Please, please don't feel guilty. Your condition is NOT your fault. I lived with the feeling of guilt for a while when I thought that if my parents didn't have me but another child instead they wouldn't have to suffer with a sick kid (until I realized they loved me anyway). This is a very painful feeling to live with, and you go through a lot as it is. You're a wonderful woman, a great mother, and an absolutely awesome writer (my friend who judged your entry told me that your writing is incredibly good). If you need to talk, know that I'm just an e-mail away.

Brenda Bradshaw said...

D as in the one in PA?

Brenda Bradshaw said...

Olga, you are such an angel! I didn't realize you knew the person that judged my entry! How cool is that? Please tell her thank you for her kind words and for the scoring that helped me place in my first contest. I really appreciate it.

(Still no word on the freakin' certificate though!) ~angry growl~

Olga said...

The main thing you won! And yes, of course, I'll tell her.

Dadio said...

Your pain is real and is justified. I understand the medicine stuff too. I’m not trying to fix you, I’d just like to tell you a little bit of my story. I have Crohn’s disease and wasn’t diagnosed until I was hospitalized several years ago. Before that, whenever I complained about anything the doctors told me “That’s just the way God put you together son.” I thought I was losing my mind.

After I was diagnosed the doctors put me on all sorts of meds that had side effects, especially the steroids. I told my wife that their had to be another way and she took it from there. She’s a PhD and a researcher. She diagnosed me way before the doctors. They just ignored her. Anyway, she researched Crohn’s inside and out looking into legitimate and whacko therapies. What made the difference? Diet.

When we decided to go down that route, we started by isolating all the different foods that I ate to see what could trigger my Crohn’s episodes. What we found was that I can’t tolerate wheat, milk, and, this ones the kicker, processed sugar. Crohn’s is an auto immune disease and I’m always subject to infections. Sugar feeds infections.

Anyway, she put together a diet that consisted mainly of meats, vegetables, some fruits, nuts, and some hard cheeses. I noticed a difference very soon and now have been in remission for almost five years. Before I did it, I was so exhausted and my joints ached so much that it was impossible to hold down full time work. I’m a computer guy by trade and could only do consulting. Before I did the diet I sounded like a bowl of Rice Crispies and popping bubble wrap when I got out of bed in the morning. Not now. The first thing I noticed on the new diet was that the exhaustion went away. It took about two weeks. I slowly built up my strength again and when I was able, sought out a physical trainer that specialized in broken people. After two years I’m to the point where I can do almost anything I want.

My specialists say that I’m the healthiest sick person they ever saw. Then they pat themselves on the back for diagnosing me and prescribing the right meds. I stopped taking the meds shortly after I started. They don’t know that. They always pooh poohed my wife’s input and still to this day believe it was them. It was all her.

Anyway, I’m not saying that this will cure you. Maybe at least it can help with the exhaustion, so you can endure and persevere.

You’re a fantastic writer. That’s what you should be doing. Write a book, I’ll buy it, read it and talk it up.
Never give up, never surrender!

Brenda Bradshaw said...

Actually, Dadio (okay, that sounds incredibly odd calling you that!) I was on YOUR site and reading about the sugar withdrawal and I told B that I wanted to start eliminating sugar. I'm a MAJOR sugarholic. And it's addictive. Like, the more I have, the more I crave. I don't want to do what you did (at least, what I THINK you did) and cut out allllllll sugars. I mean just sweets: candy, donuts, sweetened cereals. (Spaghetti sauce and that kind of stuff I'm not going to worry about.) I have four kids, so sugar is EVERYWHERE! But I think I can do it.

I just started walking one mile at home with Leslie Samsone tapes, and I got 3 lbs hand weights. I also got a 10 minute pilate DVD. I figure even if I don't lose 1 lb, at least I'll be stronger, and I can build up muscle to counteract what feels like slug.

And thanks for your kind words about my writing. As you can tell (If you read the entire stuff I spew on here), I'm kind of in a limbo with it all. But I am attempting to come up with SOMETHING to get my writing going again. It's very difficult. And once again, my guilt comes into play with "I should be cleaning" or "I should be playing with Cooper" and stuff like that.

All this guilt. (sigh) And I'm not even CATHOLIC!

Nic said...

Bren baby, you are the craziest, most outrageous beautiful soul I've come across in a long time. I have some information for you on sugar substitues. I've started using them and they're really great. Not to mention completely natural and healthy and diabetics can even eat them without having insulin issues. #1) Stevia - an herb than can be grown in a garden or you can get it in a store in liquid form. Different stevia's taste different and some can even have a sight bitter aftertaste so you may want to ask someone what kind they recommend. #2) Sweet Herb of the Aztec - another herb that does best in a hanging basket. Native Americans actually use this for sugar substitute and have for centuries. I actually have this one hanging outside the door on the patio. #3)Xylitol - it is a natural sugar substitute that has the bulk of sugar - the crystals, and can be easily used in baking. This is the one that was recommended to me by a dr. here in Austin as his sugar substitute of choice.

Those might help you out in your quest for sugar substitutes that are NOT artificial, chemically enhanced sweetners.

I think you ROCK!

Gina said...

I'd try the diet thing too and I'd stay away from anything artificial, which means sweeteners, colors, etc. They are essentially toxins. Once you break the sugar chain, you stop craving it (at least I did). Not easy but doable.

Amy said...

Brenda, sorry you're going through so much. I was thinking the exact same things that Dadio said above before I read his post. You might consider picking up a book called Going Against The Grain by Melissa Diane Smith (I think that's her name.) I'm reading it now and it talks a lot about how our 'normal" American diets play a big role in autoimmune diseases. (My friends would probably swear I'm getting a commission for mentioning it because I mention it often. LOL)

I cut out processed sugar and flour from my diet in February and have noticed a big difference already. And I wasn't suffering anything like you are when I started. Hope you can find something that helps!

Anonymous said...

Sorry your in such pain.

I would question the doctor as why he/she is giving you TWO pain medications (Vicodine and Darvocet),which dont seem to be doing a thing for you.(except make you feel exhausted.
Plus a muscle relaxer (Flexeril),
Xanax an antianxiety medication,
Wellbutrin an antidepressant.

The pain medications are supposed to give relief to the pain.
What about the bursitis? No anti-inflamatory to alliveate the inflamation of the bursa?The pain pills just elliveate the pain dont "cure" anything.

It appears as though your doctor is NOT compassionate about what you are going through, just pushing a bunch of pills,not trying to give you any real relief, not listening at all to your concerns about the side effects.

Did the doctor ever consider any form of Physical therapy (for the bursitis) or any other means alleviate your constant pain?

None of this seems to be working for you, just making you groggy, with unwanted weight gain. Your doctor does NOT appeat to be concerned with you as a whole.

Maybe it would be better if you found a doctor who IS concerned with the "whole you" and not a quick "Here take some pills,pay me, now go way" attitude.

I do hope you find some relief for all of your pain

Brenda Bradshaw said...

Oh God, no, I LOVE my new doctor!!! He's into pain management for those with chronic diseases, and the first person to ever EVER say my pain is justified, including my family doctor.

Wellbutrin (and other anti-depressants) work in two ways for fibro. 1) It DOES get depressing being in constant pain, but I'm so used to it, I didn't really notice it that much, but more importantly, 2) It rearranges the nerons (sp) in the brain that direct pain, trying to trick the brain in what hurts and what doesn't. They also prescribe anti-seizure medications for this purpose, but I'm not on those yet.

I'm not on Darvocet AND Vicodin. In fact, when I see him on the 26th, I'm going to have him change my Darvocet over to Vicodin because I'm too used to the Darvocet now. I do not take Darvocet daily, but only when the pain is so bad nothing else is working. However, I'm so used to it, I now have to take 2-3 to feel an effect.

Flexeril is a muscle relaxer, and I MUST take it three times a day. I tried to skip doses, and within 12 hours I was barely walking, and my hips were giving out on me. I have to stay three steps ahead of the pain at all times, and I learned that one the hard way.

Xanax is an instant tranquilizer, prescribed for three times a day, but I only take it as needed. Those that suffer with fibro have wickedly bad times sleeping because their entire body hurts, and we don't know how to relax enough to go to sleep, and when we do sleep, we don't sleep peacefully and wake up exhausted. (Another common symptom of fibro.)

As much as my medications mess with me, I'm 150% better than before I took them. There's a new anti-depressent out now that's been specifically targetted for the fibro group that's supposed to be as an anti-depressent AND joint pain, and we'll discuss that on the 26th as well. The bad thing about the anti-depressents is that you have to build up, and if you go off, you have to ween. I can't just switch over. But, if it'll work even better, then that's what I'll do.

I absolutely love my doctor. He's the one that told me I'd be eligible for the handicap plates and urged me to file for disability. He's the first one to say "I have no idea how you make it through the day, you're one of the worst cases I've seen in a long time." (I'm also one of his youngest patients because bursitis is soooooooooo not seen in people that are 35). The first time I met him, and cried and cried because SOMEONE finally got it!!!

As for medications that specifically target my bursitis, I don't take any. Mine is all preventative. If I have a bad bursitis attack, he gives me an injection to force the muscle to relax. He's really, truly, my hero. I told him I'd have an artificial uterus implanted just to bear his children (I recently had a hysterectomy.)

Now, B AND my mother think worse now than when I started. I'm not. I'm better. But now that I have a NAME and justification, I just talk about it more than I did. And yes, they probably think I am worse, but it's only because now I SAY, "I'm having a bad day" and not grind my teeth and bear it, thinking I was mental for hurting all the time. I've finally accepted it, and therefore, I allow myself more room to moan and groan.

Thank you ALL for your kind words. It's so neat to get support from my friends, and others that I'm just now getting to know from the big bad net. ~kisses~

Manic Mom said...

Hey Brenda--Steph from the loop here (which one, you ask, as you're on about 20 million!) When I was reading this post, I was feeling very sorry for the pain you've gone through, but then I was also thinking, "Hey, Brenda's got a memoir here!" Good/bad situation? Anyway, I think you've got a good story to tell and you maybe should? Sorry if my opinion is out of line--I just think you are a really good writer and can create a good story here, that may be able to help others in pain in the future! Be well. Steph

Brenda Bradshaw said...

Of course your opinion is out of line. But dang, I have so MANY stories to tell, and my living in constant physical (and often times mental) pain doesn't seem like a biggie to me. There are so many more out there with much worse conditions, who would want to read about mine? I mean, dang, the stories of Jon (dead..YAY!..ex) are really exciting, and of course, some of those come out on here, but more often in the books.

Now which Steph? My initial guess is Stephane E. But I know at least five Stephs from the loops. AND, I'll have you all know, I deleted myself from five the other day!!! Now I'm back to just 38 of 'em.