how to advocate for yourself

An Interview With Mischelle Jackson, R.N., RA Patient & Advocate

V Health Guide May 16, 2013
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    In honor of Arthritis Awareness Month, I would like to introduce you to Mischelle Jackson. Mischelle is living with RA, Diabetes, Ankylosising Spondylarthropathy, Psoriatic Arthritis and Sjogren's Syndrome. Mischelle is an RN. She has taught me a lot of things over the course of our friendship. Some of those things came from her medical background. Others came from her experience living with AI diseases.

     

    Q How were you diagnosed with RA?

     

    A. I had a total abdominal hysterectomy in March of 2009. A few months post surgery, I woke up with my left jaw locked. I’ve never had TMJ; however, that is what my doctor suspected and referred me to my dentist who agreed. I woke up every morning with the right jaw locked. I was only able to open my mouth a few inches. This only lasted for a month, and as quickly as it came on, it left. I knew something was wrong when I woke up one morning shortly after the jaw pain had disappeared, to find my left hand was locked.

     

    I saw my PCP and told him about it, and he examined my hand. Since I was 42 years old, he said it could just be osteoarthritis. He examined my right hand and there was no swelling, redness, or pain. Because the hands were not symmetrical, he dismissed a possible diagnosis of Rheumatoid Arthritis. Blood was drawn and a few days later my PCP told me my tests were negative for the Rheumatoid Factor.

     

    I was working as a RN on oncology unit at the time. A fellow nurse, who had been diagnosed with sero-negative RA , told me that her RA was not symmetrical and she did not test positive for the RA Factor either. She urged me get further medical treatment by seeing a rheumatologist.  So, basically I was diagnosed by a nursing colleague who had the same disease.



    I would say my diagnosis was delayed because the doctor did not think my symptoms were typical of what he had been taught about rheumatoid arthritis. I was diagnosed with sero negative rheumatoid arthritis is November 2009; however, I did not feel comfortable with this physician. I a second opinion from an award winning, reputable rheumatologist. In January of 2010 this physician expanded the diagnosis: sero negative rheumatoid arthritis that is atypical in presentation, undifferentiated spondylarthropathy to the lower spine which is a precursor to ankylosising spondylarthropathy, psoriatic arthritis, and sjogren’s syndrome. During the next few months of treatment, I was also diagnosed with fibromyalgia secondary to chronic pain associated with RA.

     

     

    Q. How did you learn that your diabetes was Type 1.5, and how does that affect your treatment for RA?



    A.  My disease process progressed to moderate to severe in just three years. In retrospect, my endocrinologist and rheumatologist agreed that my diagnosis of Type II diabetes in March 2000 was erroneous, as evidenced by failure to respond to any of the oral hyperglycemic medications over a 5 year period, and failure to respond to injectable insulins and hyperglycemic medication combinations over the next 3 years. In 2009 I was placed on an insulin pump which continually infuses insulin to help work like a pancreas. By 2011 I wasn’t producing insulin on my own.

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    Considering my medical history, my rheumatologist suspects that I actually had undiagnosed JRA. As a child I had severe joint pain and I remember my Mama sitting on the side of the bed rubbing my arms and legs until she wore out. I was poor growing up and we didn’t see the doctor except for an acute illness. My aches and pains in my arms and legs were attributed to “poor circulation” or “growing pains”.

     

    My rheumatologist showed me the nuclear bone scan and the degree of damage to the joints and told me that it takes years and years to acquire the kind of damage seen on film, which he used to substantiate that I could have had JRA that went into remission on it’s own. The disease was exacerbated by the hormonal shift of surgical menopause due to the complete hysterectomy. Given that I did not have medical documentation of my symptoms as a child, he could not revise my diagnosis, but was fairly certain this is what had happened.

     

    In sharing his speculation with my endocrinologist, my endo said that it put the pieces of the puzzle together as to why I never responded well to any of the therapies he tried for my diabetes. He stated that I actually had Type I diabetes caused by autoimmune disease, which was now being called Latent Autoimmune Diabetes in Adults (LADA)or Type 1.5. Because I was on several oral medications for diabetes that have now been discontinued, I have some liver damage which was shown on ultrasound during the complete workup the rheumatologist did.

     

    As a result, the doctor did not feel comfortable putting me on Methotrexate which can lead to cirrhosis in those with liver problems. Because of the diabetes, I am unable to take any steroids because steroids raise blood sugar levels in non-diabetics. I did chance a few joint injections with steroids to try to manage my pain; however, I was unable to successfully regulate my insulin pump to match the climbing blood sugar. My endocrinologist asked me to discontinue all steroidal injections unless I was hospitalized with IV insulin.



    Q. Could you tell me how you have accepted your Diagnosis, the things you have learned along the way, and what "gifts" RA has given you?

     

    A. I’d already lived with diabetes for 9 years when RA showed up, and that has been challenging. You don’t know what it’s like to have everyone critique what you eat and blame what you eat for blood sugar levels. There is a lot of guilt associated with diabetes and blame.

     

    When I found out I actually had LADA, it was a relief. I felt kind of vindicated in that my inability to control my diabetes was not entirely my fault. At the same time, accepting a new chronic, incurable illness was very difficult. The pain associated with this disease has been the worst thing to accept because the doctors treating RA seem to be oblivious to how daily pain can beat a person down.

     

    I was angry. I felt like few people cared. I was depressed and in so much pain that I just wanted to sleep and not wake up. I was not suicidal. I just wanted the pain to stop. By the time the pain issue was addressed, I was on my third biological agent, and my fourth DMARD, which is outrageous to me, considering I was a oncology nurse

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    When I shared that with my rheumatologist, he told me the type of pain associated with moderate-severe RA is comparable to bone cancer. Yet with this admission by my rheumatologist, he was not willing to dispense pain medications needed to effectively treat the disease. He referred me back to my PCP.

     

    It was only last year, 2012 that my pain was addressed and I began to be able to cope better with the disease. I was placed on a new pain patch that is for moderate pain relief called Butrans. The patch is worn on the skin for 7 days at a time. Having continual pain management literally changed my life because the pain wasn’t blaring every day, and I could push it into the background.



    My faith has played a huge factor in being able to cope with the debilitation this disease causes and accepting the diseases I live with. At first I was upset with God and angry. This disease has cost me a lot. In 2010 I left my hospital position because I was physically having trouble meeting the demands of hospital nursing. I went to a nursing desk job and found I wasn’t well suited for that either because of the permanent damage RA has done to my upper body.

     

    In 2011, I filed for disability and was awarded in November, 2011. Medical treatment has largely failed me to date, mostly due to the restrictions the diabetes places on my treatment plan for RA. When my rheumatologist stopped offering false hope and just told me because I cannot take two of the three cornerstones of treatment for RA, and that I would not reach remission, I finally stopped fighting against the diagnosis. I refocused my energy from reaching for remission, to living with RA. That meant managing pain so that I could function in life which has led to acceptance of the illness. I don’t think I could have come to this level of acceptance without my faith.



    Reaching out to others with RA has also made a difference in the way I cope with RA. There are a lot of misconceptions among the general public about RA and just having another person validate that they share some of the same symptoms and feelings that you have is a tremendous support.

     

    Living in a rural area, I was not able to find an actual support group to meet with regularly. The physical limitations that RA places on one makes it difficult for sufferers to meet in a physical setting on a regular basis.

     

    I turned to the Internet and participated in a online support group. I was able to make a friend of a life time who also suffers from the same disease and has similar life experiences. Daily chats with her help me get through the bad days so much better than I’d fare on my own.



    Recently, I adopted a little dog from a shelter, Gracie. She has certainly lifted the focus off me in the time that I’ve had her. I find myself being more active to take care of her and she keeps me from feeling so alone.

     

    RA is a lonely disease because it limits your interaction with people. You never know how you will feel from day to day so it makes it difficult to make commitments with others. Even though others say they understand, they really don’t, unless they have or know someone with RA.  People see a person before them who looks perfectly normal. That makes it difficult for them to believe the disease is as bad as you say it is. I pray they never have to find out just how bad it is behind the physical appearance of normalcy.

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    Having a pet has helped me. While taking care of Gracie, she is taking care of me by distracting me from the daily pain and stiffness associated with RA, but more than that, she doesn’t judge me. I’d recommend having a pet for those living alone with RA. The emotional boost she has given me is worth the pain associated with her physical care. She gives me something to look forward to everyday!



    Q. How have you adapted to having to give up your career?

     

    A. I felt that being a nurse was my calling in life. I genuinely loved helping other people and being a support to them during time of diagnosis with illness and helping them get through some of the worst days of their lives. I felt I had a gift in working with cancer patients and this is where I spent the bulk of my nursing career in working oncology

     

    As the activity of the disease in my spine was worsening, I finally had to discuss filing for disability with my rheumatologist. He agreed that it would be the best course of action. This was when we had a heart to heart about not ever reaching remission.

     

    I grieved over my career. I’ve gone from making $68,000 a year to $16,000 on a disability income. Leaving my career behind was not a choice I made lightly. God sure has used this disease to strip me of my pride. I was embarrassed to be on a disability income. Like others in my position, I’ve found myself being judged by others.

     

    People look at me and see an overweight female. When they find out I’m on disability, they assume I’m just lazy and don’t want to work, that I’m milking the system .That is hurtful.. I’d much rather have my career back with a salary that met all my needs as a single person and to see admiration in others eyes when I proclaim I’m a nurse.

     

    Like I said, God has used this disease to strip me of a lot of pride. To avoid having to explain what I’m doing now when I run into old acquaintances, I just say, “I’m retired,” and leave it at that.

     

    I haven’t entirely retired from being a nurse. I now use my medical knowledge about the health-care system and disease processes to educate others. I’m happy to use my nursing knowledge to help fellow RA’ers.

Live Bold, Live Now Living With Rheumatoid Arthritis