Monday, April 22, 2013

no answer for the weary...

Over the past month I've added a new doctor to my very long list-dermatologist.  I've had this terrible rash from head to toe!  It continually got worse.  So, I head to the dermatologist he examines me, sits down, and with folded arms say, "Wow, that's impressive.  I don't think I've ever seen anything like that"....and he did a biopsy. 

A couple Thursday's ago as I'm hooked up just about to start my remicade and I get the call....one of your slides is showing shingles--STOP THE REMICADE!  On meds for shingles I go and back to derm. ASAP to give him more skin! 

I was able to have my remicade a week late and boy was I feeling every single day!!  I've also gone back for the stitches removal and follow up to dermatologist.  Here's his words...

"You present an interesting case.  If I diagnose you, it would be a guess.  You have so much going on.  If you have another huge break out I need to see you immediately so that we can try and figure this out, but I hope not to see you anytime soon". 

Thanks for the 3 co-pays, I don't have a clue what's wrong with you, and bye.

The life of one living with ankylosing spondylitis is an interesting one for sure.  Who knows why my body has decided to have an itchy rash that in some places presents as shingles but mostly looks as if I'm covered in chill bumps (which I'm not).  When I say I'm covered from head to toe....I mean I'm covered from head to toe--I checked the bottom of my feet and it's not there ;)

As for the shoulder and the recovery, it's going well.  I'm finally able to raise my hand/arm over my head.  There is still a great deal of pain, but I'm finally able to see the progress.  So, what's next...don't know really.  I know there's a problem with my right knee, my neck and the new problem of the middle back and ribs really bothering me.  Again, all the life of living with AS.  What's happening under my skin--who knows??!!!  but I do know this....

AS has my body, but NOT ME!

2 comments:

  1. in the age of 17 years,one day i feel some sweeling in my left knee,we consult with doctor,he checked all things,and he said that plese do the blood test and xray of knee,in the xray report he got the fluid inside the knee,he remove the fluid from the knee,and said that please come after three days,i reached again there ,the doctors checked again all the things,and in the report everything is normol,he is confused,he said that i need to operate and cleaned your knee.he done the operation of knee,i allraedy hospitalized for two months.then the same thing is happend after three years in right knee,again operation of right knee,in between this time i feel stress and pain in hipp joint and back,i think its a normal pain,in the age of 26 yars agian i feels big pain in left side of lower hipp joint,after 7 days i consult a appolo hospital doctor,,my esr is 82 and fever is almost 99.5 every time.on that time i have't any hope.i got maried before three months,i am facing the problem in sex also. he suspect that this a case of ankylosing spondolytis,in mri its confirm that this is as,then he said that you need to do one blood taste hlb27,the blood taste is positive.after checking every thing,the doctor started the medicine,saaz ,pump dsr,i eaten 15 medicine in one time,but in 45 days i was not getting any relief from pain and fever.i was trying to find some other doctor,but i didnt got any relief from any where,every doctor is said a single word,no medicine for as,one day i meet on doctor of herbal medicine in delhi,he checked all reports,and said dont wory you will be ok,i started the medicine,after a week fever is ended,70 percent of pain is reduced,after one month my body is come in normol position.i feeling better and better,the doctor said to me you need to take the medicine for lifetime,and in the future also you will not facing any problem.from sep 2012 when i was starting a medicine,to till yet 8 month is passed i was not facing any problem,i am living a very good life with my family,i am in marketting job so i am driving 100km of byk every day,and going on long tour also for one month,not any food is restricted for me,i was taken every thing all type of food veg and non veg,that is my story for fighting with as,when i search on internet lots of people is facing this type of problem.from last eight month my body is so healthy and fit,and i was not doing any exercise,thank god,i am safe from the danger disese,if any one facing this type of problem pls contact with me,i will help and guide you,i always ready for help,any one can contact with me from india and abroad.
    veeresh mishra
    +917503330964
    vireshmishra87@yahoo.com

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  2. I love the 'thanks for the 3 copays, I don't have a clue whats wrong with you and bye'. Such a familiar phrase. If only it were like Starbucks and you could go to the counter, order something satisfying and keep it moving. Alas...

    theplacebopatient.blogspot.com
    A fellow AS'er

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