Worth the wait...

I am finally able to report. I have a doctor. 
Actually two. And soon... hopefully, three.

After the last horrible doctor, I just didn't have the energy to deal with all things medical. I took a break and thought I would keep her just because it was easier than continuing the search. But some nagging part of me kept saying... you don't want to settle for a bitch...there has to be a doctor out there for you. So I took charge again and decided to reevaluate the situation. Why were these doctors so outrageously pathetic at dealing with this disorder? What made them so insecure and lacking in bedside manner? And I came to the only conclusion I could draw...they are old. Old and set in their outmoded ways. Old and uneasy around a new class of informed patients. So...out with the old...in with the....(insert sound of light bulb turning on here)...

Resident! Someone fresh out of the academy with the latest knowledge and overflowing with enthusiam. Someone not jaded and comfortable with mediocrity. Someone with a fresh perspective. Someone close to my age that would see me as an equal and not a petulant child. And guess what... I WAS RIGHT! 

Now I have a doctor who gives a shit. She's bright, witty, able to type and listen at the same time. Willing to listen and sort through all my symptoms without once glancing at her watch or reminding me that she needs to get to lunch. Someone who believes that pain medication is not such a big deal in light of my condition and has a plan to go forward with further tests and treatment plans. Someone who wants to work with a rheumatologist and neurologist in order to find a way for me to live again.

About.  Fucking.  Time.    Holy shit, was that an ordeal.
and that's all the expletives I will use on the matter. I am now going to celebrate with a video game and a giant sigh of relief. Oh... that and some pain medication... bad pain day but good mental day! Aw well... you win some...

The tide has receded... Time for a beer!

11:00pm
Sleep: 8 broken hours. (4 times up)
Symptoms: weakness in arms...pain recedes... finally
Pain pills yesterday: half a percocet...
Pain pills so far today: none!


The tide has gone out. The pain recedes... as it always has. This has been my life for that past decade. This episode was by far the longest, the most acute... the worst. 4 months. 4 whole months of pain. Of fatigue. Of hell. And I made it to the other side. Time for a beer!


It's like the breath of life has come back into me. You would think I'd be happy but I'm not. I'm incensed. Angry to the point of boiling over. My world has been turned upside down by this thing and I'm paying 300 dollars a month to feel exactly the same. I hate this disease. I hate that it's invisible. I hate that my first doctor is never going to know how bad he can make someone feel.  I hate that he'll never know that I never fell down the "slippery slope" he kept thinking I was going down. 


Funny, I have a whole bottle of Percocet next to me, and I haven't taken one today. I could get high. I could knock one back with my beer. But funny enough... I'm just fine. I don't have pain so I don't need narcotics. Oh, they are so going to take my addict card away from me. There go my dreams of NA. Damn. 

Hey doctors... you are so fired!

1:30am
Sleep: 8 broken hours. (4 times up)
Symptoms: weakness in arms...pain recedes... finally
Pain pills yesterday: 2
Pain pills so far today:half a percocet...

Ok.. so the saga continues. I haven't posted in a couple days cause I had a nervous breakdown after my rheumatology appointment but I've pulled myself up by my boot straps and am wearily continuing on this absurd journey.


I learned a couple of things this week:
My rheumatologist is an asshole. Yes, an asshole. A big one. He has the bedside manner of an ice cube try.


My Primary Physician is an outmoded doctor with a mean passive aggressive streak. (and that makes him a weakling on top of an asshole). He actually ignored everything I told him... about my wanting a new rheumatologist ( he told me I should stick with him cause it's easier), needing more pain meds(he pretended I didn't ask), and wanting to try some other courses of treatment.... instead I got a lengthy note that ended with:

"you know I'm not avoiding you if I suggest we do most of this by online or telephone as we have done an extensive exam, "know" each other reasonably well now, and most issues with fibromyalgia do not warrant a further physical exam. Of course if you have new symptoms or physical findings we will be happy to see you"

No, I don't "know" that you are not avoiding me... I know you are avoiding me. And how screwed up is this... he'll keep doling out the bare minimum pain pills(pills I want to get off eventually) but as for any further treatment... I can just keep my distance cause my whiny ass ain't getting any better... or less whiny. Just grow a pair and tell me that you don't want to have me as a patient. 


There is sooooo much research on this... it's two clicks away on any google search. I have already sent them links and papers that refer to proven treatments and ways of managing pain. But it comes down to fundamental beliefs... They don't think I'm sick. They can't see it... and they don't want to feel stupid. AIDS was the same way. Blame it on the patient. Tell them it's their lifestyle. Tell them it's in their heads. But unlike AIDS... no one's dying so there's no pressure to find a cure. And it's mostly a female disease and we know how hysterical those women can be.


So...


My doctors are fired. Done. Finito.


So I start the journey again. I hired a new rheumatologist with a new appointment on the 20th of December. And come Monday, I shall have a new doctor in Seattle.  This all exhausts the hell out of me just thinking about it. It's horrible to be sick and tired and having to fight to be taken seriously. This is not an incurable disease...it's an obstinate group of outmoded idiots who hate not knowing all the answers and are unwilling to keep trying. I'm sorry... is my chronic pain and horrible two page list of symptoms making your day difficult? I'm sooo sorry. Sorry that I make you feel helpless and uncomfortable. How the hell do you think I feel? Doctors get to go home and forget about me. They get to have six figured salaries and enjoy them without pain. I really hate to say it, but I could care less how frustrating this is for them... I'm frustrated. I have to live it 24/7. Hopefully not forever.

Another good day... after another bad couple..

9:30pm
Sleep: 6 broken hours. (4 times up)
Symptoms: Carpal Tunnel... weakness in both arms and aching. Think carrying heavy boxes all day. Then think what your arms feel like the next day and that's pretty much it. Also unrelenting muscle spasms (painless at least) all through legs. 
Pain pills yesterday: 3
Pain pills so far today: 1 


I had another couple of brutal days. Especially yesterday. Ended up wanting to go to bed early cause I ended up  too drugged to do anything. Two percocet are definitely not fun for me. I just sit there unable to think with a mild drug headache. I can't really read cause I wouldn't retain it. I can't play my hidden object games cause I can barely see through the drug haze. I fall asleep if I watch tv and I'm too lazy to do chores. If I didn't take the drugs, I would have been in so much acute pain that I wouldn't have been doing much anyway. And I would have gotten edgy. That dangerous area where everything everyone does and says annoys me. Where I want to beat myself unconscious. That is also unproductive.


Usually I'm good at taking just enough medication to allow myself to still think and do things, but occasionally the pain outruns the drugs. I just have to keep taking more till finally I've tipped the scales too far. I really don't know why people get hooked on this drug. It's annoying and it doesn't feel good even when I can take less. It upsets my stomach, gives me a light headache and makes me itch a bit.  So I only take what I have to....Today, for instance, the pain is manageable and I've barely taken any. I actually drew a bit and made a pot pie and did laundry. It was nice and so much better sober. I can only hope that I will be even more sober soon.

A break...

9:30pm
Sleep: 8 broken hours. (2 times up)
Symptoms: Pain finally recedes. Still ache in neck,  lower back, and pelvis but no shooting pains. 
Pain pills yesterday: 5
Pain pills so far today: 1 1/2


It's a good day. Finally was able to do stuff. Watched my little man. Went for hot chocolate with my family. Hung out with my husband during Sky's nap. Sent Trev to the movies for a well-earned and long overdue time out by himself. Cleaned the kitchen and the main bathroom. Like I said...a good day. 
If I can say anything nice about this condition... it makes me appreciate the small stuff.
Who knew I could be happy to finally clean a bathroom? sheesh.


On a side note... we postponed Thanksgiving till Friday to make the week less hectic and give me another day to heal. Before the decision, I was dreading it...now I'm actually looking forward to it. 

Seeing Red and Feeling Blue

9:30pm
Sleep: 8 broken hours. (2 times up)
Symptoms: Shooting pains in legs, shoulder, neck, and pelvis pain. Headache. Scary weakness and shakiness in legs for a couple of hours earlier.
Pain pills yesterday: 3
Pain pills so far today:41/2


My doctor and I have been emailing back and forth with ideas on my treatment. He's nice but inexperienced in fibromyalgia /chronic pain syndromes and so he often uses rhetoric that makes my skin crawl. I sent him a video a day or so ago that had the latest Stanford research in it. He hasn't had time to watch it so I gave him the gist. He decided to add yet another nugget of helpful advice... once again inciting my frustration. I shall share:
-"thanks for the "low down" on the video. I'll plan to skim it. What was said seems to fit what we see as well. Pain meds only blunt the pain, and escalating them is a "dead-end street."


"as you probably noted in the video, good lifestyle with sleep, eating, and exercise is still thought to be paramount to the overall plan"




This pisses me off for two reasons... he, like most people seem to think pain medication is optional. Like there's something else he's offered or that I am just doing it for my own pleasure. 
Second he noted lifestyle references in the video... without watching the video or asking me what my lifestyle actually is.  This is getting a little irritating because it's the first thing that everyone assumes. 


Here's my response:


Dr _____,

When I first read your reply, I was angry. Partially because I'm in severe pain today and partially because it reiterated some frustrating elements of this last decades struggle.
I know you mean well but the lifestyle comment just illustrates a common prevalent attitude toward this disease... that it's somehow within the sufferer's control and implies that my lifestyle is somehow not good already.
I eat very well. Lots of vegetables, fruits, and whole grains... with mild amounts of lean protein. I allot at least 8 hours for sleep every night although I am often unable to fall or stay asleep very long. My caffeine intake is limited to one cup of coffee or espresso early in the morning. I drink lots of water all day including herbal tea. I don't eat a lot of sweets and I don't drink juice or soda.
Barring this latest bout of extreme pain which began in August and the last three months of my pregnancy, I have always been an active person and diligent exerciser. My workouts usually involve a minimum of 20 min of yoga or low impact cardio a minimum of 5 days a week with appropriate warm up and slow down stretches. Even with the pain since August, I take my little boy to the park and walk around the house with him as much as I can.
I also meditate, and deep breathe several times during the day.

So you see, for the past decade, I have been doing everything in my power to battle this with the tools at my disposal. And it has done nothing but escalate. 

I have also done extensive research with my condition. Pain medication is not only recommended to ease the stress of the condition, but it has been found that although dependence may occur, the incidence of addiction or tolerence is low when used in the normal dosages and with use for chronic pain. And I wasn't asking for more...not yet anyhow... I just wanted to see the dr sooner.

I really want to try more trigger point injections and maybe an antibiotic regimen as there is a lot of research suggesting that there is a chance that fibromyalgia and chronic fatigue are just variations on Lyme disease and that low-dose long term antibiotics can combat the disorder. I also would be interested in trying Lyrica or other new drugs to combat the pain in other ways. I have also found relief with a combination of muscle relaxants and pain medication when I have issues like this leg thing which is essentially a nerve/muscle spasm combo pain.

I feel a little like when I call the tech support for help with my computer... often times they ask questions like whether I have it turned on or if it's plugged in. There is a strong bias toward operator error and in most cases they are correct. But I usually tell them, that I am not a basic user, can build a computer and if I ask for help it's cause I'm at an impasse. It is the same with my health. 

Like I said before, I know you mean well, but this disease is frustrating enough without have people imply that I'm not taking basic care of myself and it's painful enough without having to beg for pain meds so that I don't lose my mind before we find an adequate treatment plan. 

Thanks 
Lisa


He quickly backtracked and apologized, telling me that I obviously take very good care of myself.  I hope anyone who wonders the same thing about me, can see I do as well.  As for my doctor...we'll see if I keep him. This relationship just might not work out. Getting so tired of this crap. 

Picking myself off the pity train

1:30pm
Sleep: 7 broken hours. (three times up)
Symptoms: Pain in pelvis (much milder), ribcage, middle back and neck. Blurry right eye and internal cold and shaking.
Pain pills yesterday: 4
Pain pills so far today: 0

Every day is a lesson in perspective. Occasionally I lose it and join my own pity parade. It's just a fact of chronic pain. I am learning not to be embarrassed by it or dwell too much on my weaknesses... I just use it as a sign that I need a new direction.

After yesterday's post, I realized how low I was. Time to get dressed. Put on some makeup. Make myself look the way I want to feel. Didn't change the pain but it still made me feel more human.  Then I woke my husband up and told him the plan. I didn't ask. There was only one option today. I wanted to go to coffee as a family and then take Sky to the park. I hadn't seen the outdoors in over a week and it was non negotiable.

Legs, back and pelvis throbbing and sharply screaming at me the whole time, I went out with my family.

Yes, I was drugged (although you wouldn't know it...pain has a very sobering effect.)
Yes, every other part of me wanted to go back to bed.
Yes, I was exhausted.
Yes.... it was just what I needed.
Sometimes you just gotta pretend.

It was a grey, cold day when we left. It was rumored that it may snow, but it really wasn't showing the signs. But it was dry so it was park weather. As soon as we started out... the flecks started falling. By the time we got coffee and were at the park, it was a full on flurry. Skyler's first. And I was there. We all were. Trevor, Skyler, me, and my pain. But it was still one of the most magical moments of my life.

And it was just the right amount of perspective I needed.

Sometimes when the bleak hits the fan, you just gotta pretend. I am glad I did.