toby1129's Journal

Since the day I was diagnosed with RA I have blindly followed the instructions of rheumatologists.  It never crossed my mind that my good health could just disappear on me so quickly.  If you've read Watership Down's the term "gone tharn" perfectly describes my reaction.  Other wise a deer in the headlights is another term almost the same.  I just did whatever they said and hoped I would soon live a "normal" life like the first doctor promised.  That was over a year ago when the RA was just in my hands.  Now it would be easier to name the joints where I don't have it.  I've just gone steadily downhill while every drug under the sun has been pumped through my system.  I'm currently on Methotrexate and Orencia.  My liver function tests came back very high so the mtx has been cut in half and will be discontinued if the LFT's don't come back normal when retested in two weeks.

I've dabbled with an anti inflammatory diet and tried some supplements recommended by my nutritionist.  I started reading and rereading information about this disease and the drugs used to treat it until it all started to sink in.  I took notes and have a notebook full of information.  I haven't been on the Orencia long enough to know if it will work.  It's only been about a month.  When I chat with people who have had RA for years it seems the long awaited remissions only last 2 or 3 years and it's back to the drawing board.

I've chatted with our resident expert sarah and she has been so helpful.  She's a wealth of information.  I haven't quite reached the point where I'll throw all the meds in the trash, but my line of thinking is changing.  My liver is being damaged.  I only have one and I need it to live. The RA may or may not do a lot of damage to my joints if I try a natural route with diet and supplements.  I can live with deformed joints and pain, but not without my liver and I'm sure as I continue my research I'll learn what other organs these miracle drugs are damaging.

My family, which consists of my two grown sons and my husband, has been very supportive.  I'm not sure how they'll react if I climb off the medication wagon, but I suspect they'll maintain their supportiveness because that's the kind of guys they are.

I'm still on the fence, but am leaning toward the more natural approach. I 'm considering staying on the Orencia to see if it works while learning more about the supplements and alternative routes.  I'm done following rheumatologist's advice blindly though.  I have to read some of the information 6 times before I understand it, but so far I have been able to digest it.  It has raised a lot of questions about the treatments that have been prescribed for me and about some that seem like they should have been prescribed but were not.  I'm seeing a new rheumatologist this month in hopes she'll be willing to work with me on an alternate approach.  If not, I'll find someone who will.  I question now.  Why would the doctor try three different TNF blockers.  For me that meant 9 months with no relief of symptoms or pain.  How would a different brand name make the difference?   I know I'm getting very cynical but as I've spent a lot of time is doctors waiting rooms and watched the drug reps parading in and out welcomed with open arms, often bearing food platters for the staff.  They wine, dine and treat the doctors to free tickets to events, fishing trips etc.  When I google a new drug it comes up on Reuters Financial page.   I'd love to believe the drug companies are out there looking for a cure, but cynical as I've become, I really think it's all anly about the money.

I need to reclaim my life.  I can hardly walk from here to there.  Just doing my job takes every ounce of my energy.  I no longer have any leisure activities.  I either physically am unable to do them or am too tired to try.  I got myself a handicapped tag and I will get past my pride or denial or whatever is stopping me from using a wheelchair or a scooter when I need to cover any distance.  I'm tired of being left in the house while I encourage my husband to go ahead without me.  This all happened so fast from good health to exhausted wretch.  I'm tired of putting a smile on my face and pretending I'm fine.  It's official.  I'm asking for help.  I need to park close.  I need help getting around in big spaces.  I'm too tired to come to meetings at 8PM and I cant' climb the steps to the house where you're holding the meeting.  I admit there are many things I'm not able to do, but there are still many things I can and will do.  Some how I will find a way to handle RA with grace and wisdom.  I can't promise I'll never have another pity party.  But I'm definitely done being left behind when there are devices that can help me get out there and get moving.  From now on my handicapped tag is my friend but so are my couch and my afghan when I need them.

Right now I spend 4 days sick from the Orencia treatment and one day sick from the mtx.  Hmmm.  Is my math wrong or am I spending three months a year sick?  LOL 

I'm off to research diet and supplements and alternatives.  Wish me luck!