Baltimore, Maryland is home to The Orioles, The Chesapeake Bay, and one of the world's leading hospitals. Johns Hopkins hospital may be my next hope for healthcare. Over the past month, my health has changed; it has gone in unexpected directions and I have developed new symptoms. In an act of desperation, Matt began some intensive research. Google lead us to Johns Hopkins which has a clinic specifically for Sjogren's Syndrome (SS from here on).
SS is commonly explained as an autoimmune disease that causes dry eyes and dry mouth. Fatigue may also be a secondary symptom. On Johns Hopkins website, though, we were able to match virtually every "new" symptom I have developed to SS. I was diagnosed with SS in January, but was told by my Rheumy that SS isn't a big deal and that I should be able to lead a perfectly normal life. Imagine my surprise when I began having difficulty concentrating, walking, and eventually suffering from a seizure last month. As I read on JH's website, I learned that most Rheumys are poorly educated on SS because it is A) hard to diagnose and B) not fully understood by medical professionals thus, not properly taught to medical students. SS is actually quiet serious and if left untreated can really cause serious problems in many areas of the body. At first, I found that really intimidating and I was filled with fear. The good news, though, is that I'm finally educating myself on what my body has been going through. That is a first step.
Upon researching, we found out that JH openly welcomes those suffering with SS to come to their clinic with only a simple referral from their physician! We are only about two hours from Baltimore which makes it a possibility for me to seek help at JH! The doctors review patients' records prior to their visit and set a plan for testing and treatment in place before the patient even arrives. The website also explains that the patient needs to set aside 1-2 days for their appointment. For those of you that are chronically ill or know someone that is then you understand the amazing hope that this offers! I am used to appointments lasting 15 minutes--my vitals are taken, the doctor doesn't make eye contact, and he readily pushes me out the door with an unneeded prescription that I never get filled. A whole day--maybe two--of testing and treatment plans. That's only what I've been wishing for over the past three years!
I have had my medical records forwarded to JH. Now, I wait. The specialists on board (neurologists, Rheumys, gynecologists, optometrists) will review my records and have the office call me for an appointment. With so many specialists on board, that means that I will virtually be checked from head to toe.We're in the "waiting room" right now living life as usual until we hear back from the office. Please pray that I will be able to make an appointment soon! The love and support that I have been extended over the past three years during this whole ordeal has been an overwhelming blessing. I am gracious.
If you're in a waiting room of your own right now--whether health or other issues--stay hopeful. If you lose hope, look to those around you to encourage you. The community that supports you is always wider than you think.
Love,
Nikki
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