Back in the Saddle

What an incredible few months it's been- especially these last few weeks have been like coming out of hibernation.

Dr. S., my general practitioner, felt like we were hitting a wall with my treatment as nothing we were doing was helping me at all. I was sleeping 16-20 hours a day, more when I had worked the day before. I could only work 2 days a week because any more would leave me completely wiped out, like I said in Fear and Loathing.

So I was on Prednisone for most of January, which helped somewhat, but Dr. S.'s most important suggestion for the month was that I should see another rheumatologist. Preferably one that wasn't a complete moron and pervert like the last one. So I go to see Dr. K.

When I explain the situation to Dr. K. she says, "I don't believe in fibromyalgia."

So I said, "Yeah, I don't think this is going to work out."

To which she responded, "A few years ago I was named the top fibromyalgia doctor in the Philadelphia area."

Perhaps she should have led off with that.

She went on to say that all cases of fibromyalgia have a cause and that doctors tend to use the diagnosis of fibromyalgia as an excuse to stop looking for that root cause- especially since there's such a huge market for drugs that do help a significant portion of the people with it.

We talked about how those new fibro treatments- the Cymbalta, Pristiq, Lyrica, Savella- none of them worked for me. What worked best was anti-in

flammatories and muscle relaxants. When we started talking about my old injuries things got interesting.

We talked about my bad hip (My Story), my broken leg (Spaz Girl Walking), the sprained ankles, tendinitis-es, pulled muscles, the nurse-maid's elbow I got as a little girl.

"Hm." She said. "You sound hypermobile. Can you t

ouch your thumb to your arm, on either hand?"

"Both," I said, demonstrating:

Then she asked if I could touch my palms behind my back with my fingers pointing up. "Easily."

She put me through a few more positions, all the while saying, "Yeah. Oh, yeah. Oh, boy." My hips in particular made her wince.

So it turns out all my joints are applesauce. And my body hates it.

She diagnosed me with Benign Hypermobile Joint Syndrome (my Beighton Score is 7/9)-- though they're trying to drop the "benign" from the name because, while some people can live their lives never even knowing they're hypermobile, there are people like me whose lives it ruins. But being as my case is rather severe and I have a number of the other symptoms, the hypermobility could be a result of Ehlers-Danlos Syndrome. We're starting the process of testing for that...more fun. I don't want to talk about that though, really, unless I have it...I'm honestly too scared.

Anyway, we talked about how I was once athletic. How, once I feel healthy enough, I immediately start exercising again until the universe decides to punish me for it-- my hip, my ankle, the endometriosis. She said I never would have broken my ankle if it hadn't been for the hypermobility-- that a normal person's tendons would have been able to hold their ankle in place instead of just letting it flop over and snapping like mine did.

She also told me to never tell doctors I have fibromyalgia because after they hear that word they'll never listen to me. "Your nose could fall off your face and they'd blame it on the fibromyalgia. When you're having a problem don't ever let them give you that as the reason." I immediately thought of the endometriosis battle, specifically Mystery Diagnosis and Other Medical Issues.

I have an appointment with a physical therapist coming up, Dr. K. said he'll be able to help me re-learn how to move in a way that's safe for my joints and build up muscles that will help the stability of my joints so they don't hyper-extend and strain other, related muscles. She said I could make a full recovery.

But I'm not so sure. Hypermobility doesn't explain why my muscles refuse to heal when injured, and my chronic muscle spasms and pain. Don't get me wrong, hypermobility explains a lot of things about my life, both now and in the past, but it doesn't explain everything. Hypermobility may be the cause, or one of the causes, of my fibromyalgia, but I don't think the hypermobility actually IS the fibromyalgia itself-- if that makes any sense.

So now there's more waiting. Dr. K. also me off the Lyrica, which has done wonders for my energy level, but the withdrawal has exacerbated my muscle spasms. That's been fun.

But I am most definitely back. There are a number of good posts coming up-- I've gotten some great ideas during this hiatus. More good stuff coming soon, I double promise.

Take care of yourselves, always.

New Doctor, New Methods

So I went to my new GP this morning. Well, my new old GP, he was actually the first doctor I saw after we stopped going to my pediatrician after he almost killed my brother by making a stupid mistake when I was six.

So now I'm seeing him again. The GP, not the pediatrician. The pediatrician is dead, actually, come to think of it.

The first thing new GP did was take me off Celebrex, which is crazy weird since I've been on Celebrex for over a year now...but he's right, it's not really doing anything for me and isn't worth the possible long-term effects to my heart. So he started me on Lyrica.

He asked why my old GP didn't put me on Lyrica to begin with since, from my description of my symptoms (the "bugs" and pinches, burning, nerve jumping...), Lyrica is an excellent idea for me. I told him that the other doctor was concerned about my weight, but the new GP, Dr. S, said my weight is really the least of our concerns-- that once I start feeling better I'll be able to do more and the weight will just fall off.

Which is true, really, when I was at the Internship from Hell I dropped 15 pounds like it was nothing. I eat well, I just can't do anything. He also said that since I'm 5'4" by their measure (yeah, I'm suddenly 2 inches taller. Don't know when that happened.), my BMI is 31 which is really only 1 point out of the normal range, which works out to about 10 pounds. Here and I thought I needed to lose 60.

I should lose 60, and I will eventually, but holy crap-- 10 pounds from the high end of normal? Word. Up.

Dr. S also said no more milk and no cruciferous vegetables, which is harsh because I loooove milk (5 English Foods We Need in America) and cruciferous vegetables are some of my favorites (broccoli, cauliflower, Brussels sprouts, cabbage, horseradish)...he said we'll try it for a year, then I can start them again and if I don't notice a difference in the way I feel I can have them back. I whined a little and he said, "Hey, I like redheads, but my wife is a blonde." It made me laugh.

So I took 75 mg of Lyrica and I feel strange...I know something's different, but I'm not sure what. I almost feel a little dopey. It's weird.

My stomach really hurts, and it's not even the real pain yet-- I'm really scared. Dr. S gave me some baby Vicodin, Norco, but only 6. Six days of relief...

I kind of feel like I'm in a fog. Like my head is cloudy. Or...it's even almost like I'm underwater, like I'm moving in slow motion and it's taking things that happen longer to get to me, like the sound from the TV. I've got a little headache, though, so that could be part of it.

--

I might have shattered my mother's brownie dish this afternoon...I'd used it to make some frozen pizza [Dr. S said occasional cheese was okay :) ], and it was so super hot it was burning my hand through the oven mitt, so when I put it in the sink I thought I should run some cold water over it so nobody would get burnt and...well...kkkshh!! Many, many pieces. Many pieces. Oops.

It gave me the idea for a new tag for you, though, so some good comes of it. "Learn from My Mistakes".

Well, more than some good, really, because now I know what to get my mother for her birthday.

Edit: While I was making dinner I also broke one of my ramekins. I have suspended my own "touching things" privileges for the rest of the day, for my own safety and the safety of others and our possessions. It's better this way. Spaz Girl Walking

Waiting...

This thing, whatever it is, has made my daily life so surreal. And complicated.

I'm sitting here, waiting for the pain to start. Just waiting for the crippling pain to come, and I really can't do anything else. I've moved some things, made some preparations, because once it comes I won't be able to do anything at all...I can't look for a subbing job even though I desperately need the money, because who knows what condition I'm going to be in this week?

So I have to just sit and wait.

It hasn't started yet, and if it doesn't start tomorrow and it decides to start the 28th I may not be able to make it to my doctor's appointment, but I need to go because I need all of my many prescriptions renewed because my insurance no longer covers them under my old doctor.

I'm also out of the good pain pills my father gave me, and if he's out, too, I'm extraordinarily screwed.

Mick and Debra had their meeting with the child study team at Manny's school so we're all waiting for their call.

So I'm waiting.

Arthur's Christmas present last year was to be a Doctor Who-esque scarf that I never finished, so now that I'm going to see him Saturday and he's been complaining about his scarf-less-ness I'm trying to get it done, so I'm knitting while I'm waiting.

Did I mention I was waiting?

I'm already sore, and the whole deal has been making the fibromyalgia worse since it started, so I'm miserable, sore, knitting and waiting x 2.

Waiting sucks.

Sometimes Right

There's this hilarious site called Not Always Right and it features quotes from the customers of the world who...let's just say they're not always right.

Sometimes, though, sometimes the customer is right. Like today, when the GYN's office finally called.

Naturally, as with all phone calls you're waiting for (or I'm waiting for, anyway), I missed it. The voicemail said, "Hello, this is Dr. Tra-la-la's office and we have the results of your ultrasound. Please call us back as soon as possible at 555-GYNS", so I call right back.

Receptionist: Hello?

Me: Hi, the office just called me?

Receptionist: No.

No? No?! Really. Wow. That's amazing how the voicemail just magically appeared like that 30 seconds ago. Also...how rude!

Me:...uh...yeah, I received a voicemail saying my test results were available.

Receptionist: *annoyed sigh*

I'm so sorry for interrupting you from doing your job by asking you to do your job!

Receptionist: Who called you?

Me: They didn't say.

Receptionist: *clearly irritated* What's your name and who's your doctor?

Me: Plum Jo, I see Dr. Tra-la-la.

Receptionist: Hold.

It was like a command. I was ordered to hold. So held I did-- I'm nothing if not obedient. I held for 15 minutes.

After those 15 minutes a much nicer receptionist told me my ultrasound results were normal (Yay, I think...), but that my primary doctor hadn't sent my most recent blood test results, so we can't do anything yet. Once the doctor gets the blood test results he'll call back with the next step.

THESE PEOPLE CLEARLY DON'T REALIZE THAT THE PAIN IS COMING.

So I called my old primary doctor's office (I'm still in the process of switching GPs as the first appointment with my new one is the 28th.) and left a message for them to send over the results ASAP. Why did I leave a message? Because the records/referrals lady only works until noon.

What the crap is that? People have to wait a whole extra day if they can only make the call during their lunch break? Or if another doctor gets back to you after 12? Harsh.

And as for jerky receptionist up there, it's your job to talk to people and be pleasant. I'm pretty sure this was the same jerky receptionist that, before my first appointment (Natural Disaster Rag), had me announce all of my personal information in front of the entire waiting room. Like name, birthday, social security number, that kind of thing. You know, the kind of stuff that an identity thief is just praying to hear, and the kind of thing you fill out on those new patient forms so she was about to get all that information on paper in front of her anyway.

She also kind of looks like my bitchy aunt.

But lucky(?) for me my credit is in such poor standing that an identity thief would get laughed at if he tried to take out a credit card or something in my name.

Not even kidding, the interest rate on my credit card is 29%. My dad said he's going to close the account to see if he can negotiate a lower rate since technically it's his card, too. Jesus, I hope he can...I'd really like to be able to afford to move out some time before I'm 30. That'd be nice.

Sickness has unfortunately pushed back some pending posts...I don't know why I even bother teasing them anymore, they still never get out in a timely fashion. I'll work on that. Probably tomorrow...

What Not to Say

So sorry about the lack of posting these past two days. 


Sunday I tried to post from my phone, using texts, but blogspot didn't mention in the feature that oversized texts couldn't be posted-- which is why, if you tried to view posts I made that day, they were gibberish. I've deleted them. 


So Sunday I was visiting with Gayle and a couple of our other friends as Lisa had come up from Florida. It was a great time, and I really love my friends, but it was a very long day for me and I've been recovering. Hence the non-postage. 


This has been floating around for a while and was posted recently on Deb's Fibromyalgia Blog, and here it is at Care2. I don't think it could be stated any better, and I kind of want to make a line of T-shirts and tote bags with this list on it- "If You're Thinking About Saying ANY of These Things to Me, Please Don't"...or taping it to my bedroom door for my parents to see every day. And I understand and appreciate if you're just trying to help, but sometimes help can really hurt (and we're in enough pain as it is!):


10. We all get more aches and pains as we get older.

The pain of fibromyalgia is much more severe than the normal aches and pains associated with aging. Little things that shouldn't hurt at all can be excruciatingly painful. Plus, most people develop FM long before they should be experiencing age-related aches and pains.

9. I think I have that, too – I'm always tired.

This statement shows a basic misunderstanding of the severity of the fatigue associated with FM. The fatigue of fibromyalgia is so much more than just being tired. It is an all-encompassing exhaustion. You are drained of energy – like someone pulled your plug, cutting of your source of power. It's kind of like taking the batteries out of the Energizer bunny.

8. My friend has fibromyalgia and still manages to work. Maybe you just need a job (hobby, etc.) to take your mind off the pain.

Translation – you must be lazy. The fact is, the severity of FM symptoms varies. Some people have fairly mild symptoms and are able to continue working. Some continue working longer than they probably should because they have no other choice, but they suffer tremendously. Others are so disabled they are confined to a wheelchair much of the time. While getting involved in a project can help to distract your mind from the pain for short periods of time, if you have a more severe case, it doesn't work well enough to allow you to consistently work a 40-hour week. And it doesn't help dispel the extreme fatigue that usually accompanies FM.

7. My doctor says fibromyalgia isn't a real disease; it's just a wastebasket diagnosis.

First of all, this doctor obviously hasn't kept up with the latest research, which clearly demonstrates that FM is a very real, physical disease. Also, to date the FDA has approved three medications to treat fibromyalgia and they generally don't approve medications for imaginary illnesses. There are a few doctors who will tell patients they have fibromyalgia if they can't figure out what is causing their symptoms and just want to get the patients off their back, but I have to question the ethics of a doctor who would do that.

6. If you got more sleep, you'd feel better.

Well, duh! One of the major problems with fibromyalgia is that something prevents the body from going into the deepest stage of sleep, when the body naturally restores and replenishes itself. Even if you manage to stay asleep for several hours, you're most likely not going to awaken feeling refreshed. And most sleep medications do little to help you achieve that deep sleep. They may help you get more hours of sleep, but probably will still not give you the deep sleep you need.

5. I read about this new product that cures fibromyalgia.

This can be one of the toughest comments to deal with because it is usually said by well-meaning friends or relatives who genuinely want you to feel better. The products are frequently some kind of “natural” supplement being sold through a multi-level marketing plan and are very expensive. If those making the suggestions are casual acquaintances, I generally just tell them I appreciate their concern and will look into the product. However, if it's someone closer to me who is likely to keep asking if I've tried the product, I go on to explain that there are dozens of products out there claiming to cure or at least improve FM and I just can't afford to try them all. Read Let the Buyer Beware for tips on how to evaluate product claims.

4. At least it's not fatal.

My first thought in response to this comment is always, “Yeah, but sometimes I wish it was. At least then I'd know there was an end to the pain.” I rarely say that, though. Of course I'm glad it's not fatal. But that doesn't help reduce the level of my pain or the depth of my fatigue. Nor does it help to raise research funding or bring attention to the needs of FM patients. Understandably, people tend to be more interested in preventing death than in improving the quality of life. Maybe I should start actually saying what I'm thinking when someone makes this comment. At least it might get their attention.

3. You just need to exercise more.

Often this is another way of insinuating that you're lazy. This comment in particular has always bugged me. Perhaps it's because I used to be a dancer and aerobics instructor. If more exercise were the answer, I'd be all over it. Yes, exercise is an important component of any fibromyalgia treatment plan, but it's only one part and it has to be approached slowly and carefully to avoid triggering a flare. Read Fibromyalgia and Exercise for more information on how to incorporate exercise into your FM treatment plan.

2. But you don't look sick.

This comment puts the FM patient between the proverbial rock and hard place. If we let ourselves go and show how we actually feel, people are uncomfortable and don't want to be around us. On the other hand, if we manage to fix ourselves up and put on a brave face, no one realizes we're sick. If you think about it, most chronic illnesses are invisible. My dad had heart disease but looked great until the moment he died from a massive heart attack. My mom had pancreatic cancer but looked fine. She didn't even know anything was wrong until it was too far gone to treat. She didn't “look sick” until the last couple of weeks of her life when she was confined to bed. Just because someone doesn't have visible sores or a crippling deformity doesn't mean there's not a serious illness just under the surface.

Ta Daaa...... Here it is - the number one thing you should NOT say to a fibromyalgia patient:



1. It's all in your head.

This is the all-time worst and most insulting thing you can say to someone with fibromyalgia. I used to launch into an explanation of how FM is a very real physical illness, complete with symptoms, etc. Now I simply say, “You're right, it is in my head. Researchers have found that there is a problem with how my brain processes pain signals.” Enough said. 




--


Really, all this can be summed up in just one: trust that the patient knows more than you do. 


And now it's time for a nap!

Living on a Prayer

I have a weird sleep schedule. I suspect my days and nights are flipped as the most natural thing for me to do is sleep all day and stay up all night. I fight against this so I end up going to bed around 3ish and sleeping until noonish, so I end up showering around 1 or 2 in the morning. 

My parents sleep with the door open (don't get me started) and our bedroom doors are separated by a 2 square foot bit of carpet at the top of the stairs. The main part of our house, our bedrooms and the living room and kitchen beneath them are over 100 years old and were part of a farmhouse before the area was made residential. People that have been in my house would think this is weird considering that my house, along with a few other houses both on my street and in the surrounding area, is a duplex. The interesting thing about that is that all of the other duplexes are laid out exactly the same way, exactly the same as my neighbor's side of our house and Herbert's a few blocks away: a basement, 3 rooms downstairs, 2 upstairs with an upstairs bathroom, and an attic. 

But my house isn't laid out that way, and it's the only one not-- so basically things were built up and around these four little rooms. The point I'm trying to make is my house is old, and the stairs between my bedroom and my parents bedroom are old and creaky, and I have to go down them to get to the bathroom because our bathroom is tacked on to back end of the downstairs because our house was built without a bathroom. That's how old it is. 

So the point I'm trying to get at is I often wake my parents on my way downstairs to shower, so it's not unusual that I wake them, then they have to use the bathroom because they're really old and always have to go to the bathroom (Hi, Mom!). 

The other night this happened, so I wasn't surprised to see my mother in our living room on my way back upstairs after my shower. I was surprised she didn't need the bathroom...and I was even more surprised that she was crying. 

Like so many others, we're struggling right now, financially. We're only getting a fraction of what we should be because my father was forced out of a job when he retired from his union and they threatened to take away his pension and benefits if he took a position having anything to do with plumbing-- which is ridiculous and illegal and we can't afford to press charges. I'm not going to go into the levels of sick there. 

So now we're trying to find me a gynecologist, but since New Jersey raised the doctors' malpractice insurance rates to the highest in the country a lot of specialists left the state, so only the really wealthy could afford to stay, which means they're all at least twenty minutes away in the "old money" section of the state or in Pennsylvania- so I can't find a male gynecologist within a half-hour of my house that takes our insurance. Yes, male. I'll post about female doctors one day, but not today. 

And I have to leave my regular doctor. I stopped seeing a pediatrician when I was 6 when he almost killed my brother Mick. So I started seeing our family doctor, so now it's been-- what, 17 years? But my insurance no longer takes out-of-network doctors so I have to leave him. There aren't any in-network doctors nearby, so we have to go to an out-of-network doctor that at one time was a business partner of my now-ex doctor but they split up their practice after they got caught taking bribes from a  lab to only use that particular lab and then not claiming it on their taxes. So they broke apart the practice. Anyway, so we have to go to the other guy, but he charges 3 times his usual rate for the first appointment and we all need to go see him because our prescriptions are no good because they were written by the other doctor, so no longer covered so we'd have to pay full price for them. 

Full price for prescriptions. To put this into perspective, I take 11 pills every morning, and 11 pills every night. 

That's 77 pills a week. My stomach medicine alone, with insurance, is $50. Without insurance? $1500. 

The good news is if I do have endometriosis (that's the good news!!) I can stop taking those and go on a cheaper stomach pill-- but I'm going to need more medicine for the endometriosis. 

So you see why my mother was crying?  And why our family's theme song is "Living on a Prayer"?

God, I need a job.