Monday, January 16, 2012

"Thrilled To Have RA"

Isn’t it amazing how the media only picks up the atypical cases of RA to promote. The average person doesn’t know the difference between OA and RA, then sees one of the media's stories or one of the drug commercials for RA and thinks “how lucky those people are to have a treatable disease”.  Kelly at recently wrote about a lady who was thrilled to have RA instead of lupus.  I don't want to get into a "my disease is worse than your disease" war, but anyone who is "thrilled to have RA" seriously needs to have their head examined.  Of course we are all different and perhaps she has a very mild onset of the disease, if so I'm happy for her but she needs to understand the full effects of RA before opening her mouth to the media. 
I have been very fortunate so far to maintain a somewhat active lifestyle, but I can feel myself slipping over the past two years. I also hurt every damn day, I just push myself to go on and enjoy life. It’s not something that comes natural or easy any more. 
I am looking for a new rheumatologist for the time being.  I have a good rheumatologist, have good insurance so what could possibly be wrong you ask?  In this day of "never take anything for granted", my insurance company tried to push a new contract through while adding a clause that would relieve them from paying the full charges from any specialist.  The network that my rheumatologist is in refused to sign it so therefore, I am without a rheumatologist at the end of this month.  I have talked to both parties and both are pointing the finger at the other.  All I know is, I am the one who is losing out in spite of paying in my healthcare premiums every month.
I have been working on my 650 and have made progress in the 6 weeks that I have owned it.  I went for a short 65 mile ride this afternoon in search of an abandoned railroad bridge.  I found the old railroad bed and a cool arched drainage tunnel underneath the abandoned railroad bed, but it was too muddy and rutted to take the KLR through to get to the bridge.  If I would have got stuck, at 440 pounds, I would still be there trying to pull the big bike out.


Lana said...

The first thing I noticed was that title, and thought, “Seriously . . . There is Terry kidding again.

The average Joe doesn’t know the difference but it amazes me the media doesn’t take the opportunity to research and talk to the experts before posting an article or news segment. I am not sure I want to know what is worse or to be thrilled that I have RA and not Lupus. I just want to feel normal again. I want my kids to have a normal mother and it would nice if that mother didn’t feel 80 when she was only 36. My disease is moderate but it is still painful and difficult but I am living with it, just like you are and many others. I no longer wish that my diagnosis was a mistake because I know that it isn’t. I know that if I end of in remission, it will not be long term and I understand and I accept all this. Here is the other thing about the lady interviewed – if she was just diagnosed, how does she know that she won’t get worse? Seriously? I suppose we can just leave her to ignorance.

Good luck with insurance thing and new rheumatologist search. Good to hear that you were able to get out on your bike. We have been slammed with snowstorms. It is warming up the next few days but we have another cold front coming through mid-week.

Anonymous said...

Too funny, no offence, but I felt a relief when they found out it wasn't Lupis. The thing is that I didn't know much about either disease, but perceived Lupis to be much worse. The insurance industry is always working on every penny and is very much about maximum profit. I hope that you can find some good options without having to travel or pay huge copays.
Good to hear that you were able to get out and that the KLR is still keeping you happy and mobile.
Central New York is finally in winter and we have cold and snow. The kids across the street were having a blast on thier snowmobiles since we had the day off for M.L.K. day.
Still tired here, but doing my best.
Hang in there bud.
Ditto on Lana - Feeling 80 sucks.


mary said...

That insurance thing is really a shame. I have had the same rheumatologist for 25 years. We joke we are getting turning into 2 old fogies together. I know he is going to retire soon and I dread having to look for a new doc. Good luck with your search. Strap yourself in it is going to be a bumpy ride the next few years with regard to insurance and health care.

Candied Frogs said...

Oh man, were at -8c, (that's 17.6f on your strange temperature scale), and my poor bikes only get to idle in the garage. It's great to see a rider who's able to get out into the elements! Great looking ride Terry... Love the bridge. I'm glad your RA's not stopping you! Keep posting all your rides; I fully intend to live vicariously through you until my nasty weather warms up in the spring. :)


abcsofra said...

Love that photo and better you then me out there in that cold...brrrrrrr....and this coming from a now southern lady :-) My heart goes out to you and your now forced quest to find a new doc. I will be reading with interest if you have any luck and if the new doc and you see eye to eye on treatment plans and all. It is hard enough having a chronic illness and then throw in insurance changes, doc changes, copays...well it just can get so complicated. And that is for the ones with insurance. Imagine for the ones without.

tharr said...

Lana ... do you really think that I would kid around? lol I know the feeling of 80 somedays. Fortunately I have my good days too though. Remission, even clinical remission, would be awesome, but I have given up on it. I have good news regarding the insurance mess.

Phil, I would LOVE to get my hands on a snowmobile!! I got to straddle a couple of them when I went to Minneapolis on a business trip in 2010, but have never rode one. I'm still hanging, we have had a very mild (my favorite kind) winter so far. Talk to you later.

tharr said...

Mary, that's great that you have had the same doc for so long. It would be scary to think of replacing a doc after that long. I went to my rheumatologist yesterday and have good news about the insurance mess, I will post on it later this weekend. I'm afraid I agree with you on the next few years ... not just about insurance either.

Hey Andy, good to see you. You mean -8 keeps you inside? lol With my RA, I have progressed to the point that I don't ride under 50 anymore, just too painful. Sunday when I took the KLR out, it was 68 here. We have had a mild winter so far. BTW, it's supposed to be 70 this Sunday followed by 72 Monday! Bring your bike down and ride a little down here.

Hey Deb, it's not been very cold this winter (so far). It got down to 25 last night and todays high is only going to hit 45, but this weekend it will be back up around 70 again. My doc worked me in yesterday for a last visit before then end of the month (the last day they were taking my insurance). I was talking to him about a rheumatologist 100 miles north and he gave me some good news. I will post on it over the weekend. Between dealing with my insurance (and I have pretty good insurance) and MTX, it's amazing that I have any hair left. I don't know how people make it who don't have insurance.