An Inside Look... Literally

**Warning - Long post**
Some of you who live close or are family know that I have been battling something weird health-wise since the beginning of the year. My hands had been achy for awhile but I clearly remember the first time I couldn't open and uncurl my fingers. We were driving home from our Christmas visit to Utah, Bryan was driving and I was just waking from a nap. The knuckles on my fingers felt stuck and kept "popping" open and then back to the stuck position. I remember thinking as I popped them open again and again, "That's strange my fingers aren't opening. Hmm... Boy, those Amarillo cattle really stink today..." Pretty soon my fingers seemed back to normal, we continued home and I didn't think much about it until the next morning when it happened again as I woke up.

This morning stiffness in my hands very quickly progressed up my arms, to my elbows and shoulders, down my back, to my hips, and then down my knees and to my ankles. I thought I may have the flu or a virus but had no other symptoms like cough, fever, nose issues, etc. I took motrin and tylenol and tried to continue living my life but then I spent almost a week in bed, hardly able to move. Bryan finally convinced me to go see my doctor. I rarely go see the doctor. I would have actually considered myself very healthy. I'm pretty sure I've been in to see the doctor once since Jordyn was born which is over 4 years ago. Wow, I so felt like a dork going in and saying, "My hands really hurt."

He took many, many vials of blood, ran oodles of tests and told me a needed to see a rheumatologist but that they are hard to get into and I may need to wait a few months before I could be seen. The Lord was watching out for me because when I later called one of the top doctors in Dallas the receptionist said we can see you in May or we can see you tomorrow if you can be here by 5 AM. I'm sorry, did you just say 5 AM in Dallas?! I took the appointment. After the doctors consultation, exam, another gallon of blood for more tests, x-rays of every joint in my body, a bone density screening and prescriptions for prednisone (anti-inflammatory) and meloxicam (pain relief) I arrived back home at noon. Yes, 7 hours later...

This appointment was followed by a full body bone scan where they injected a nuclear phosphate into my blood, waited 2 hours for my bones to absorb it fully and then, similar to an MRI, scanned my joints. I've posted a few pictures of the scan. The brighter spots indicate areas of intense inflammation.

my hands

my shoulders & clavicle/sternum

my spine
We just had our results appointment this week. Obviously they found significant inflammation in most of my joints. (I didn't bore you with the other pictures...) I have somthing called Undifferentiated Spondylarthropathy, um... what? Which pretty much means I have symptoms of some form of arthritis in the spondylitis family, which includes Crohn's disease. I also have mild thyroiditis and mild scoliosis of the lower back that is likely to worsen. Whoa. I was happy letting Bryan be the medical freak of the family. Now what?

The medicine seems to be greatly helping, at the results appointment the doctor added one more medication (azulfidine) to my list and then on top of that I get to take folic acid, calcium, prilosec and a B complex to combat the potential effects of the other medications. Sweet. This for the person who has to be talked into taking tylenol...

I'm taking one day at a time and I am having more good days lately which is helping me come to grips with accepting this diagnosis. I will say one more thing (since this is an abnormally long post) - I'm not happy with having to take prednisone. But when I am old, overly agressive, have severe acne on a puffy face, a full beard and am so hunched over from my fused spinal column that young children will avert their eyes, Bryan says he'll still love me.


Spymommy said...

Hilary, I am so sorry about this diagnosis and the stress it has more than likely introduced into your family. I have to admit, I was about in tears during the whole post but then busted up laughing at the last lines . . . you have an amazing sense of humor and it will help! I'm praying for you. I hope all the meds give you the relief you need. Love you!

Erin said...

Can I just say that I love you! You have such a good outlook. I'm not glad that you have that long named thing but I am glad that you have some answers to what was going on. I too will still love you when you are old and bent over. Can't wait to see you at lunch today!

Aubrey said...

Oh my gosh, that is awful! I am so sorry! What can I do for you? I know I live at the edge of the world, but I'm not THAT far away. You are awesome!

kay said...

Hey Chickie!!! WOW, what an amazing skeletal structure you have!!! I am so impressed!!! I wish I looked that good in an x-ray!!! It was wonderful to talk to you this morning and I hope (and pray) that you are able to find relief from the symptoms and that you are able to cope with whatever is in store. But then again, I know you, you will and you will do it with amazing style, grace and humility! Just know that I love you dearly and that I will do anything in the world for you! Even if you just need to vent or use up some medicine-induced aggression - I'm your girl!!! I can take anything you can throw at me! HA!!!

I LOVE THE BLOG and love being able to keep in touch with you, Brian, Cara and Jordyn!!! PLEASE keep it up!!!

Talk to you soon!
I love you,

Anderson Zoo Keepers said...

Your x-ray does show off your amazing shoulders. You are obviously never going to need shoulder pads. :-)
You rock.

millhallow said...

I am impressed with those pictures! You look pretty cute x rayed. You are amazing! Have you seen most old people? They are all bent over, you fit right in :)!