To answer your questions…

Many of you notice that I frequent my doctors a little more often than most people… because of this I tend to get alot of questions.  For the longest time I didn’t speak much about my health challenges because I didn’t want to “give life” to something I hoped would go away.  This didn’t really make me feel any better about the situation.  It is something I deal with- some days more than others.  I still hope it “goes away”.  I believe God is in the miracle business and any day now, I just might get mine.  With that said- I can’t think that just because my diagnosis hasn’t changed that God isn’t performing miracles in my life each and every day.  SO… to answer your questions, I’m gonna tell you a little story.

A little less than a year after I got married I started feeling some minor joint pain.  I was 20 years old and seriously thought this was just aging… seriously.  I was waiting tables at the time and assumed that because I was on my feet carrying around heavy plates of food- this had to be the cause.  However, after a few months the pain worsened to the point that after I got home from work and laid down I was UNABLE to stand up for hours due to the pain.  At the time I was seeing a small family doctor that Jimmy had been seeing prior to our marriage.  His reply was “take some aspirin”.  He never once ran a test or even physically examined my joints.  A little later the pain jumped from my ankles and feet to my fingers and wrists.  THe pain was excruciating.  I was waking up multiple times in the night just to go run my hand under hot water to alleviate the pain.  I remember scorching my hand with hot water and not even realizing it one night.  Something had to be done.  After the encouragement to see a new doctor by one of my friends, I found an internist that would see me.  He immediately ran tests, did an examination and diagnosed me with Rhumetoid Arthritis… I was only 21.  He referred me to a Rhumetologist.  Now begins the fun part…

Over the next year I was poked, poked and poked again.  My fear of needles completely subsided.  I was put on and taken off of numerous drugs, none of which seemed to work.  Until we could find a drug that would suppress the progression of the disease I was put on steroids to handle the symptoms.  They did handle the symptoms… I could walk and function with little pain, however I blew up to 220 lbs.  I’ve never been thin, but this was a gross weight for me.  I had tried oral drugs, self injections and finally, finally found relief with an IV infusion drug.  Coming to terms with the diagnosis was hard.  I felt like I was way too young.  I was very healthy as a teenager and didn’t understand why this happened.  I knew that there was no known “cause” for RA, but I couldn’t help but wonder what I did wrong to cause this.  I thought I had to have eaten something or been exposed to something… and who knows, maybe I was.  Once I started treatment, the pain began to subside, I came off of the steroids and with the exception of taking a monthly infusion, I was living a normal life. 

Dun dun dun (insert scary music here).  Then a wrench was thrown into the situation.  There was a change in my insurance and the drug I was taken was no longer covered.  Mind you, this infusion costs upward of 3K each and every month.  I’m sorry, but I just don’t have that kind of money… A five figure doctor bill later the doctor told me she could no longer treat me until I paid my bill. 

Now, I have to take a jog here to defend myself… I’m more responsible than your giving me credit for.  I did not knowingly rack up this bill… I was unaware of the change to my insurance until the charges had already been made.  I believe in PAYING your bills and if you can’t afford it- you don’t get it.  got it… good!

So, completely distraught I left the doctors office.  The fear of the pain returning was greater than the pain itself.  I knew that the drug would stay in my system for about a month so I had to figure something out, and quick.  I went straight from the Doctors office to the library where I checked out a stack of books about 3 and a half feet high on RA… How to eat, exercise, meditate, stand on your head and sleep on your couch to control the disease.  Well, God was definitely in my corner that day, because it just so happened that the month I could no longer receive treatments, I went into remission.  It was the best I had ever felt!  I went on a diet, exercised and dropped some major poundage.  I LIVED at the gym.  I was spending 2 hours every single morning- 7 days a week working out.  I started running, doing yoga- you name it.  My favorite exercise though was to set the treadmill at the highest incline and hike the treadmill until my legs felt like jello.   Doing this I managed to tear the meniscus in both of my knees.  A trip to the orthopedic surgeon later- I found that the injury had triggered my RA back into full effect.  My remission was a short lived 7 months.

Dilemma:  now I have to find another doctor to treat me- and a treatment that I can afford.  I did some research and found the most wonderful perfect rhumetologist in town who agreed to treat me and assured me that we would find an affordable treatment that would work and not make me fat again.  And we did… the same treatment that I was taking at the other doctors office.  Turns out, many drug companies will assist with what your insurance company wont pay so that the drug is more affordable to you.  Yeah, I just wish my last rhumetologist had told me that.  I began treatment and life was once again good.

Its been a battle, and it didn’t end there.  WIth plans of trying to get pregnant drugs had to be shuffled around once again- leaving me with another bout with steroids, more weight gain, a new treatment and a few crappy allergic reactions (resulting in Benadryl drunkenness and Benadryl hangovers- who needs drugs and alcohol). 

That brings us up to date.  Maybe this was too much information to share, or maybe it just explains enough to bring you just a step or two into my world.  Yes, you can pray for me… but please- I DO NOT want your sympathy.  I am a fully functional adult.  I am able to get around and perform just as good- if not better than people with NO health issues.  Yes, I have good days and bad days.  BUT IM FINE!  I’m more than fine. 

On a side note, I have to add how wonderful my husband is.  In the early stages of my diagnoses, where maybe I did want a little pitty, he never pushed me to do more than I was capable of.  He ALWAYS took care of me when I needed it and did urge me to get out of bed when he knew I was just feeling sorry for myself.  He loved me at 220 lbs and told me I was beautiful and hugged my round tubby body every day.  I love him so much and thank God for him every single day!

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About jellybeansundae

Im just a not so average 30-something experiencing life at a different angle.
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2 Responses to To answer your questions…

  1. robervin says:

    You, my beautiful friend, are amazing. I love you.
    -Roxanne

  2. Mindy says:

    Thank you for sharing all of this. We all have our own struggles and for some reason we feel like we need to hide them. I think it’s high time we all stop pretending everything is perfect and share our lives with people so that we can really pray and minister to each other. And you won’t get sympathy from me, I KNOW you could kick my butt at the gym!

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