Tuesday, July 15, 2008

Less Than Ten

Remember Music Monday? Remember how I wanted to have a "new day" when I gave up MM? Well, I got one. No alliteration but it is consistent. I call it Methotrexate Wednesdays! Who ever heard of a drug you take twice a day once a week? Weird.

One of the reasons for my extended Utahn visit was to see a specialist in Brigham City. My aunt, who also suffers from JRA and is one of my favorite people on the planet for many reasons referred me to him. I made the appointment in January. Yes, he is that busy. By the time June came, I have to be honest, I was more than skeptical. I almost cancelled the appointment. We have spent thousands of dollars on medical bills thus far with no results. My faith in Western Medicine is faint at best. I had resolved that I would come back to Hawaii and hit the naturalistic stuff hard. No dairy, no sugar, no gluten. Not to mention the slew of supplements I was stocking up on. I had to have a back-up plan. I was going to give Western Med one more chance in Brigham CIty but if that didn't pan out (and I knew it wouldn't) I had to know I wasn't just going to sit around and do nothing.
I made a contact through my sister-in-law, Ruth, for a naturalist specialist in Logan so I did have some hope that my health my reside in Cache Valley.
I made the trek north. The day started on a good omen when my brother went to work and left his iPod in the car I was using. New music on a two and a half hour drive? Not too bad. The Jealous Sound, Nurses, The Snake, the Cross, the Crown and other great new (to me) music made the other-wise looming journey fly by.
The doctor's office was inundated with painted, wooden clogs. Pictures of windmills, blue and white plates with Scandinavian script and pastural paintings hung on every inch of the walls throughout the small office. Except one section of the wall in lab room and one corner near the front desk. These areas were completely devoted to dogs. Dog pictures, dog calendars, dog quotes and a plaque that said something like "you'll never love anyone like your dog" only I think it mentioned death in there somehow.
The doctor came in and I told him my whole story. He asked a lot of questions. He pulled out (gasp) books. He sat beside me and read out of books (still shocking to me: a doctor that has set his ego aside long enough to admit that he either doesn't know or can't remember something and look it up! Fantastic!) the mystery symptom which is. . .my stumpy toe.
I am pretty sure most of you know I lack ten full toes, but just in case I have a mystery lurker out there who does not know me in real life, it is true. I have nine and a half toes. My fourth metatarsal on my left foot is significantly shorter than the rest, thus dropping the whole toe down. I have always been told this is unrelated to my JRA. This was the initial instinct of Dr. Brigham City as well, which is why he pulled out the book. He thought maybe I didn't have JRA but something related. Just a side note here: I currently have no signs of JRA in my blood work. i have had several doctors debate this diagnosis, two tell me that I don't have any arthritis (check the basketball knee genius!) and one who prescribed an anti-convulsive. I was nervous that Dr. BC was going to be of a similar camp.
As a surprise to both of us, Dr. BC found in one of his books links to shortened metatarsals or metacarpals to JRA especially the form called Still's disease. This occurs in very young infants and is often accompanied by high fever and unexplained rashes. My symptoms as a toddler match this exactly. Yahtzee! I am not crazy! I am still broken, but not crazy!
Dr. then said we needed to see if my disease is active by draining my knee and examining the fluid. He was shocked that no other doctor had done this before as this is the first and fastest way to tell if an auto-immune response is occurring. To make a long story a teensy bit shorter, he drained my left knee and got one of those fatty-huge syringes (I forgot the cc number) full of nasty, dark yellow fluid. Yellow= bad. Clear=normal. He shot some cortisone into my knee since he had the needle in there anyway.
I have been balking at aggressive meds for months but he is the third doctor to suggest it. And he had proof. A footballer who gets his knee blown out in a tackle may have a white cell count of 2000 in the fluid around the injury. Mine was 8000. I am going to need new knees in less than a decade if I don't do something. That is fact. Dr. said something to me as we discussed the possible side-effects of my new Rx regime. He said: "yes, these drugs are bad, but the disease is worse. you must remember that.". I guess that is sort of obvious but right there, in that office, with a wooden windmill above his head, I believed him.
Tomorrow will be my fourth Methotrexate Wednesday. As of now, I am still riding the wonderful wave of cortisone. I know it is nothing more than a band-aid but I do loooooooove the pain reduction. I have so much energy. I even tried to run. . .for 20 steps. That hurt, but I COULD DO IT. I actually just teared up typing that.
I am not going to discount health. I am still eating dairy and wheat but I am going to continue talking to naturalistic experts. Maybe once I get this under control I can go off of the big guns and maintain my health naturally. To be honest, I felt guilty starting the meds. LIke I had given in or taken the easy way out. I am feeling better about it now, though. Who says you have to be one way or the other? Do I have to have dread locks, make my own deodorant and gather fennel fronds to be a good person? Or can I eat kale, take my krill oil and avoid double knee replacement with a little Methotrexate and Plaquinil?
All in all I have to say that Dr. Brigham was the best doctor I have been too. He is willing to treat me over the phone and in person whenever I visit. He encouraged, nay, demanded I call him often to check in and his assistant's name is Bianca. I don't know how that last part is a positive, but for some reason, for me, it is.


Steffy said...

Yeah for doctors! I hope that this new guy is a genius and helps you so so so much! And hurray for running!

Meg said...

Thanks, Steff. I know if anyone has a right to complain it is you. I think it is amazing how sympathetic you can be even to petty whiners like myself. Thanks for being a great friend and inspiration. I feel like there should be a song cue here.

Erin said...

In my line of work I meet three kinds of parents of naughty children. The first are in denial. They know their child and they wouldn't do that. The second are sometimes surprised but you can tell they are upset and say it won't happen again. Often times it does and you don't feel like you can trust the parent. The third kind of parent, though, would never put anything past a teenager - even if this has never happened before - they give you their home, cell, and business phone number. And then the come sit with their student during class without you inviting them just to let junior know they mean business. As a teacher, these are the parents that rock. They can be counted on, but the beauty of it is that you may never need to use them again in that way because they give you the confidence to hold something over their child's head and that the accountability doesn't end when the kid walks out the door. Knowing the secretary's name, demanding that you call when you live a mountain range and an ocean away - sounds like parent #3. I hope it works out!

Meg said...

Erin, I LOVE the way you explain things. You should be a teach. . .wait. . .I guess you beat me to it. Nice work on choosing a career that totally caters to your talents. I wish you were my teacher. Or parent. I guess I will just have to settle for friend and occasionally sister if we are ever out and about together and confused for siblings.

Claudia said...

Okay...I've got NOTHING compared to E. I was just so happy that you found someone in smallish-town UT who actually took the time to figure out what was going on. Regardless if the ultimate diagnosis/treatment plan is the same, at least you know what you are dealing with. I love you and miss you more than I can say, and HAPPY BIRTHDAY!! (Lame card is on its way)

Angi said...

I'm so happy for you, I feel like you just birthed a new(ish) knee. This story and the picture reminded me of the aligator attacks of the good old days.

Malia said...

I started to read this post the other day but with fussy Kamalei in my lap had to come back later to finish. (He is still with me, and fussy, but at my feet:) Well, I feel happy and sad. The trials we have to endure, especially the random health obstacles are never easy. I am so sorry you have had to deal with this for so long... BUT I am very encouraged to hear there is someone to help. I LOVE the take out the books, and let's investigate Dr. You will be in my prayers...

Brianne said...

Holy cow, that's amazing to finally find a doctor who knows what he's doing and that he took the time with you to actually figure some stuff out! P.S. I still remember the first time I saw your baby toe, cracks me up!

Joshua said...

I NEVER KNEW! How could I have known you for so long and not known you had JRA? I enjoyed the pic as well. Brooke has never seen your stumpy toe. I can remember the good 'ol days of that toe on the pool deck. Anyway, the eye nerd in me has just come out and wants to know if your wonderfully amazing doctor suggested 6 month eye exams because of the Plaquenil? I just want to see how good this guy is. He does seem really good though to take that time to figure out what was going on. What windmills and wooden shoes can do!!!

Dave and Tori Williams said...

Hey Meg,
I didn't realize you had health problems other than those during pregnancy. I'm sorry. This may be a stupid question but what is JRA? I hope everything goes well with your treatment and I agree that this doctor sounds like he knows what he's doing and I'm glad he shows genuine concern for you. If you ever need anything or just someone to talk to or vent feel free to call me =)