Marilyn Hogg

 

At the age of two I was diagnosed with Juvenile Rheumatoid Arthritis but I believe I have had it since I was born (hereditary).  I remember growing up hating to go to the hospital to see a big, old, mean looking, stiff doctor who never had anything good to say about me except just what I should be doing, etc.  I guess one of the main reason's I hated to see my Rheumy back then was because I knew I would have to have blood work done and what child at any age likes someone poking a needle in their arm even if there was a lollypop at the end of it !   I remember waking up in the hospital as a child (my mother told me I was about 4yrs. old) and my left wrist was in a cast/sling and attached to the wall above my head.  Now you try and sleep like that, I still have the scar on my wrist from that surgery, I think my mom said the doctors wanted to take out some bone marrow to study it or something, not quite sure, but the memory of the hospital is quite vivid.  As a child, I remember that a green van would come pick me up at my house and drive me to the Sick Children's Hospital downtown and there I would change into a bathingsuit and get into a long retangle pool and boy was it cold but it was suppose to be.  There we would do leg exercises and arm exercises but mainly for the legs.  From that pool we would go to a round pool where it was like a hot tub, ouuuhhh it felt so good, and there were parrallel bars in the water, etc. and we would use those to exercise with.  Those are really the only childhood memories that I can remember of my JRA. 

 

In the summer of 1985 (age 15), we had moved for the first time in eleven years to another city and school.  In November I had just started my first new job, I was working in a big grocery store called "Loblaws", it was great, I was making $6--somthing an hour and I really enjoyed it as I worked in the deli section.  I had only worked three days when my right knee swelled up like a football and I was at my friends house at the time and they put a bag of frozen peas on my knee but it was so painful that they ended up taking me to the ER.  Now this had been about seven or eight years since I last had any problems with RA, so I had actually forgotten what it was like and only knew of it as a big complication in my life.  So the doctors all assumed it was just water on the knee and they took a huge syringe and extracted the fluid to the point where blood started coming out and there was a lot of fluid!!  Anyways they finally diagnosed me with Rheumatoid Arthritis, I assumed they dropped the Juvenile because I was no longer a child.  I ended up losing my job because I was off sick for a week and they actually made me quit instead of putting down that they let me go because of sick time, etc. I guess they would of had to pay me more money or something I don't know, all I know is that I was nieve at the time.  I also began going to school with crutches and canes but it became to difficult and had to drop out half way through my first year at the new school.  Luckily the school arranged for a tutor to come by the house and even though I didn't care too much for him, I did manage to pass my subjects.  

 

Since 1985 I have had four Rheumatologist and the one I am with now is wonderful.  He is so caring and treats me like a person not a number.  I actually look forward to appointments with him. 

 

I've been on several drugs including indomethacin, sulfalazine, gold injections, naproxen, imuran, methotretate,  celebrex, prednisone, arava, hydroxychoroquine (plaquenil), relafen, cytotec, radioactive gold injections and minocin.  I know that there are way more than these but my mind is drawing a complete blank. 

 

When I was put on the drug hydroxychloroquine (plaquinel) I had a severe rash reaction to it.  The doctor called it "target marks" as they had a red ring and then a red dot in the center.  They were fifty times more itchier then poison ivy and nothing seemed to help.  I would put ice on it and the moment the ice came off the itchiness came right back and to top it all off the doctor said that due to the fact that the drug takes three months to get into your system and start working, it's going to take three months to get out of your system.......YIKES!!!!!!  Boy was I glad when that finally cleared up as it covered practicallly the whole body. 

 

In September 1997, I had a side effect with one of the drugs called "minocin".  After four to five weeks of usage, I produced severe headaches and these headaches persisted and got worst over the following days.  Also, I began to vomit and stopped eating and taking all of my medication including my "prednisone".  Finally after a few stops into the ER they finally admitted me into hospital where I was in the care of a Neurologist and she did catscan's and blood work, etc., then she performed a spinal tap (lumbar puncture).  She was amazed with all the fluid that was coming out.  The second it came out, my headache disappeared but then I got another headache and she explained that I was the "one in ten" that get these low pressure headaches and that I had to remain in a lying down position for at least 24 hours until the membrane had healed and no more fluid could leak out.  The Neuro came back to tell me that I had "benign Intra-cranial Hypertension", that's when the head begins to  fill up with fluid and the brain begins to swell as it tries to absorb it.  This disease can also cause one out of ten people to go blind.  I was scared as I was having vision problems from this and thought I was going to loose my sight.  But thank God, I haven't and believe me, it's when you realize that you are about to lose something that you realize just how precious it really is.  I would gaze out the hospital window and look at the tree's leaves turning colours and the birds flying around.  It was absolutely gorgeous and I would lose this precious gift if I lost my sight.  I think we take too many things for granted and we should sit back and reanalyze what we have and be grateful for it.  Anyways, back to my story, the Neuro released me from the hospital a few days later and I went to my mother's place to recouperate.  Within five days, I was vomiting and the headache was back and I stopped all meds.  They transferred me to another hospital because there were too many complications trying to get me an MRI scan or just trying to get me admitted back into hospital, let alone just trying to find me a stretcher that I could lay on while they arrange all this as I was in a very bad state.  I had showed up in a wheelchair with my nightie on and a bucket on my lap with a roll of paper towels to clean up any mess....talk about a mess, you should have seen me !!   When I arrived at the other hospital the Neuro there said I looked deathly ill, my face was gray, etc.  He treated me and set up the MRI scan and kept me in the hospital for a couple of weeks.  I've been seeing him ever since for this head problem as they once thought they would have to either put a shunt in my skull or take a part of my skull out to release some of the fluid/pressure, if the medications didn't work.  Luckily the medication has worked and if all goes well I will be stopping all the meds. for this problem in the New Year! 

 

As for surgeries, I have had a few of them in my life time, well at least I think so.  I had the left wrist surgery when I was four.  I've had my left wrist fused with the distal ulna removed (I think I've had about four surgeries on this hand). While fusing the wrist I had aspirated on the operating table and ened up in the Intensive Care Unit with the respiratory tube down my throat doing the breathing for me.  I tell you it was scary waking up and having a machine helping you breath.  The right wrist I had two synovectomies and removal of the distal ulna.  My right knee has seen two or three surgeries (synovectomies).  I've had three surgeries (although one never really went completely through) for the same bloody kidney stone (it seemed the little critter didn't want to come out).  I think I might be forgetting one or two surgeries but I believe you get the idea.  

 

And last but not least about me, myself.  I am a fun loving person, who loves a good joke and loves to joke around with friends.  I love to laugh and to make my friends laugh.  I love animals and have a cat who is cleaning her paw right now.  She usually sticks by me when I'm on the computer by sitting on the stool I use to keep my legs up and she hoggs it all!!!!!  When I was first rediagnosed at age 15, I did have a difficult time for a little while to come to grips with the disease as this was a big change in a teenager's life....it had robbed me of my teenage life.  But being the happy go lucky type of person I am I was able to see through it and accept it and to this day I accept it like I would a gift.  I believe I was given this disease in life to learn things and the struggles I went through would make me a stronger person and I must say I have learned quite a bit from having this disease then if I didn't.  I always think to myself not how bad I have it but just how lucky I have it, that I have my hearing and eyesight to see so many beautiful things, to look at my husband every day, to see the tears in his eyes every time he tells me he loves me.  I am thankful that I have my arms and legs so that I can walk along the boardwalk at the beach with my arm in his.  There are just so many people that are far worse off then I am and I am so sorry for them, so by reflecting on their problems,  mine seem so miniscal.   I am a very giving person, always thinking of the other person, almost too much so that I neglect my dearest hubby.  My husband is a darling and I believe that he is my guardian angel sent from Heaven with the purpose of helping me get through life and to make it less of a struggle.  He is the most kindest man I have ever met, he is always thinking about me and my disease.  He always takes me to my dr. appt.'s and when I have surgery he is always there.  When I go in for surgery he is there and when I come out he stays with me the whole day and everyday while I'm in the hospital.  He is continuously giving my hugs and kisses and telling me he loves me (and I thought only women did that!!).  I could go on for hours about my husband and I would never have said enough about him, he is my soulmate and I love him dearly and I thank his father who is no longer with us because my husband has his father's traits to a tee.  God bless him.  Okay now that I have gotten sentimental here I think that it is time to end this piece of history as it has drawn a few tears and I have probably gotten off tract and I apologize.  I am also sorry that it is so long.  I hope this was the type of info you were looking for and I look forward to reading other member's history with Still's and other related illnesses. 

Marilyn  

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