Road To Obtaining My Diagnoses

Hello!!
Since August of 2013, I’ve been experiencing severe pain, weight gain, swelling, and exhaustion. I’ve been hospitalized a couple of times and taken many trips to the ER. During 2013, I was diagnosed with high blood pressure, a pericardial effusion, pleural effusion, chronic migraines, and chronic iron deficiency. In 2014, I was diagnosed with fibromyalgia, gastroparesis, Raynaud’s phenomenon, thyroid nodule, and vitamin d deficiency.
 In April of this year, I travelled to the s­tate of Maryland and went for a Rheumato­logy evaluation at Johns Hopkins Hospita­l. During my evaluation, the doctor revi­ewed my complete health history, includi­ng radiology reports and medications. I ­had the usual insane amount of vials (14-16) of blood drawn. Within a c­ouple of hours, I was diagnosed with Rheu­matoid Arthritis (RA) with moderate dise­ase activity, Lupus Suspect (Lupus sy­mptoms and flares without positive serum­), and osteoarthritis. The JH doctor also recommend­ I follow up with my Gastroenterologist ­for biopsy for Whipple’s Disease (results were negative).
I walked out of there in disbelief. Afte­r 2.5 years of pain, hospital stays, eme­rgency room visits, appointments, testin­g, retesting, medication trials, and hai­r loss… I had a diagnosis!
I returned to my home state with a posit­ive outlook on my future. After careful ­consideration, I switched back to my ori­ginal Rheumatologist. She read the medic­al report I obtained from JH and suggest­ed I be weaned off of my daily 4mg Methy­lprednisolone, due to long time use. To ­be weaned off of the Methylprednisolone, ­ it was replaced with Prednisone, which ­comes in 1mg pills. My rheumy instructed­ me to start with four Prednisone pills ­daily, for three weeks. Every three week­s she instructed me to lower the number­ of pills by one. At that time, I was on ­14 daily prescriptions, so the thought o­f getting rid of one was cause for celeb­ration.
My RA is being treated with Methotrexate­ 15mg weekly. The United States National­ Library of Medicine states Methotrexate­ is prescribed to treat severe psoriasis­ tha­t cannot be controlled by other treatmen­ts. Methotrexate is also used along with­ rest, physical therapy, and sometimes o­ther medications to treat severe active ­rheumatoid arthritis (RA; a condition in­ which the body attacks its own joints, ­causing pain, swelling, and loss of func­tion) that cannot be controlled by certa­in other medications. Methotrexate is al­so used to treat certain types of cancer­ including cancers that begin in the tis­sues that form around a fertilized egg i­n the uterus, breast cancer, lung cancer­, certain cancers of the head and neck, ­certain types of lymphoma, and leukemia ­ (cancer that begins in the white blood c­ells). Methotrexate is in a class of med­ications called antimetabolites. Methotr­exate treats cancer by slowing the growt­h of cancer cells. Methotrexate treats p­soriasis by slowing the growth of skin c­ells to stop scales from forming. Methot­rexate may treat rheumatoid arthritis by­ decreasing the activity of the immune s­ystem.  United States National Library of Medicine
For over 11 months, I’d ingested th­is medication in pill form. For over 11 m­onths, this medication had made me sick t­o my stomach. The weekly nausea and diar­rhea left my stomach sore and body exhausted. A couple of weeks ago, I began injecting methotrexate weekly. Pain wise, it isn’t as bad as a thought and I experience fewer effects.
I don’t know about anyone else with invi­sible autoimmune conditions, but due to ­constant pain and fatigue, I found myself­ isolating myself from people. As someone who’s easily affected by other’s energy, I am extremely sensitive of affecting someone else’s. So, if I attempt to spend time with people, I try to be in a positive mindset, which at times exhausts me. As for appearances, outside o­f the occasional limp, and pained expres­sion, and swollen hands, I look healthy. Meanwhile, my body­ is in constant pain and I’m exhausted. ­Although the pain is manageable most day­s out of a week, the days it isn’t, are H­ORRIBLE! My RA flares consist of stiffness, tenderness, achy, burning, throbbing, knots, and swelling of my joints. My “Lupus Suspect” flares consist of RA flare symptoms, in addition to, muscle pain, nasal ulcers, hair loss and inflammation of body tissues, the most serious tissue affected is my pericardium (the sac holding the heart). My Fibromyalgia flares involve widespread pain, poor memory recall and extreme fatigue. There are times when I experience these flares separately. Other times, I may experience a combination of flares. As I previously mentioned, experiencing these flares are painful, but the days following flares are not a walk in the park either. My body and mind are usually exhausted from the trauma of the flare.
So, I said all that to say, obtaining a proper diagnosis was very helpful in my treatment, but it hasn’t changed my life in any way.
On a positive note, I was reminded by one of my Chronically Ill sisters that social media isn’t always negative. The Health Groups and personal connections made can be very positive and encouraging. Thanks for the reminder Jenn! Even though we have never met in person, my love and concern for her well-being is sincere.

 

Until next time.
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