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.
