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A Caregiver's Poem
A Caregiver's Story, Scleroderma
A Smoker's Story....."I Just Want To Live"
Card of Thanks
Coping With Autoimmunity
Fibromyalgia and Ankylosing Spondylitis
Fibromyalgia Talks To You
Hypothyroidism, Low Thyroid Condition
Induced Platelet Disorder
Life With SLE
Living With Chronic Pain
Lupus Knows No Boundries
Lupus, Scleroderma & Raynaud's
Lupus, I Just Want To Be Normal
Multiple Sclerosis, Diane's Story
Polyarteritis Nodosa, "My Old Doctor Is History"
Polyarteritis Nodosa, Winning The Battle
Pregnancy Loss and Lupus, This Is My Story
Raynaud's Phenomenon: Cold Hands, Warm Heart
Recovering From Depression

Submitted by: Leslie, Saginaw, Michigan


Here is my story ..... I got married in Sept. 2002, got pregnant Oct. 2002, miscarried in Dec. 2002.  I was 27 years-old. We were told after the d & c to wait 3 months to try again.  In Feb 2003 my knees started to ache.  I didn't think anything of it because I had a knee injury in 2001. In March 2003 the ache went to my feet.  Anytime I got up to walk I had to go very slowly.
I went to my primary doctor and he did blood work for arthritis.  He didn't want to put my on any type of drug because he knew I was trying to get pregnant again.  By the end of May I could hardly move without pain, the pain now was in my hands, my shoulders, elbows and basically all over.  I had to crawl to the bathroom because to stand up it meant that I was going to be in terrible pain.  I would call my doctor crying asking for help because I was in so much pain.
"For a few days I felt better......"
I started to throw up anything I ate or drank (including water).  I was told to go to the emergency room because I may be dehydrated.  At the hospital I got an anti-inflammatory shot and he gave me 15mg of predinsone.  For a few days I felt better.  At the end of May my doctor thinking I had rhemitoid arthritis put me on Vioxx.  My legs then broke out with purple bruise-like lumps from the knee down.  My ankles were swollen so bad that it looked like I didn't have ankles.  My hands were now swollen so bad that my knuckles were turning black.  My parents looked at my legs and were shocked.  My mom thought she better go to the doctor's with me.  The doctor walked in with the newest set of tests that had been done on me and said "the good news is that you're not having a heart attack."  My mom and I could not believe what we had just heard. 
"My Mom got angry......."
My mom got angry and said "look at her legs!  She's lost 10 pounds in 3 days and you're making jokes?  I want her to see a specalist."  Then the doctor asked who she thought I should see and she said my now rhuematogist name.  My doctor wrote something on a sheet a paper threw it at us and stomped out.
During the first 6 weeks of being diagnoised, the "rude" primary doctor would not send me out to any specalists because I had a HMO insurance and that would be money out of his pockets.  When I was scheduled to go to the University of Michigan the first time he would not give me a referral to go because he thought I should just see some one else.
"Having to deal with a HMO when you are this sick makes it ten times worse!! ........."
My new doctors at the University of Michigan had to send him and every other doctor, nurse, and staff in that office a letter stating that if they did not allow me to come down there that they were going to be held responsible.  I never got to see this letter but apparently it was very strongly worded because I got every referral I ever wanted after that.  I even saw on my chart at the "primary" doctor's office a code in huge, bold numbers-"referral code for u of m"!  Having to deal with a HMO when you are this sick makes it ten times worse!!
We made an appointment to see the specalist and he could not see me until middle of July.  I had to wait over a month.  I went back to work because they were starting to get angry with me.  They had no sympathy or compassion for me even though I was visably sick.  One day at work my rings on my fingers started cutting off my blood supply.  It took me a half an hour to get them off.  This day I couldn't take the pain anymore.  I called my Dad who worked near me and asked him to take me to the emergency room again.
"My blood pressure was sky high....."
The doctors at the hospital didn't know what to make of me.  The lumps on my legs, my bloodpressure was sky high just laying in bed and I was in some serious pain.  Within in an hour my husband, mom and sister showed up at the hospital.  Two more doctors came in and looked at me, they asked which specalist I was supposed to see and got in contact with him.  The specalist said he would see me on Monday.  At the hospital they took 13 vials of blood from me and I nearly passed out.
"The specalists were shocked......"
On Monday when I saw the specalist they were shocked.  I couldn't raise my arms up to touch my head, I couldn't hardly move, my color was bad and all around I was a mess.  He did x-rays on my hands, ankles, knees, and wrists.  I was there for about 4 hours.  From there he sent me to have a skin test done on my arm to check for infectious diseases.  Those came back negative.  For the week following the appointment all I did was have bloodwork, urine tests, bone scans, x-rays and other various tests done.  I was put on vicodin and ibprofen for pain.  For some strange reason the ibprofen really seemed to help me.  I was able to walk some-what normally again.  My specalist was puzzled by this.  Even though I had some pain relief I was still very ill.  I still could not eat, I was very sensitive to hot and cold.  If I got cold I would start to shiver, then it would worsen like I was having a seizure.  My mom had to run and get blankets to put on me.  I was bundled up like it was winter in the summertime!
I had an EMG done on my hands and feet to check for nerve damage.  I continued to lose weight and not be able to eat.  In total I had lost close to 40 pounds in 2 months.  I had a biopsy done on tissue from my legs and that is when vasculities was revealed.  My specialist is the best one in the area where I live and for a second opion I was sent to the University of Michigan in Ann Arbor, Michigan. I was seen by 2 diffrent doctors there and looking through all of my documents they also confirmed that I had PolyArteritis Nodosa.  I was diagnosed at the beginning of September 2003.  I was started on 40mg of predinsone and it seemed to work a miracle because I felt so much better.
In November of 2003 I was sent to the University of Michigan once again to have an angiogram done to see if this disease had done any damage to any of my internal organs.  Luckily it had not.  It was deemed that I had a mild case of this disease.  I would need close to one year worth of treatment.  I was put on a drug called Immuran, an autoimmune suppressent.  I started at 100mg each day.  In the process my predinsone was slowly reduced.  Very slowly!!  I moved up to 150mg alternating with 100mg every other day. 
In March of 2004, even though I was better my workplace fired me.  They claimed another reason for firing me, but I feel they discriminated against me because I was ill.  In April of 2004 my family and I took a trip to Florida for vacation, when we returned I was taken off of predinsone and was kept on the Immuran.  My specalist said that if the disease was going to come back I would have known it when my predisone was down to about 5 mg. 
In June of 2004 my Immuran got raised to 150mg/175mg alternating.  I was also told the news that in November of 2004 I would be taken off of the Immuran and I would be done with treatment. I was also told that they believed that the case of the PAN that I had was a one time occurance and would likely never come back.   I was told the whole treatment would take close to 2 years now it was down to less than a few months.  My whole family was so happy and excited.
In November 2004, I will have to go to the University of Michigan again for an opinon if I can be taken off the Immuran or not. (It is not for sure-but we're hoping!).
It has been a long journey, one filled with tears, pain, hope and prayers.  I am looking foward to November, I will be throwing a big party if I am done with treatment.  We are all going to celebrate the meaning of life!  I will have to wait approx. 4-6 months after November to try to get pregnant.  As a result of having this disease, if I do get pregnant I will automatically be deemed high-risk and will have to be seen my specalists. 
"I have a  wonderful new Primary Doctor........"
For now life is good, I have a diffrent job that understands that I was sick and do have to go to doctor's appointments once a month.  And as for that primary doctor that threw the paper at us, he is history. I have a wonderful new primary doctor that does what is best for me, knowing that I have this disease.  Hopefully the journey will end with a happy ending.
Thank you for letting me tell my story. 


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