Hi my name is Dezarae.thank you so much for reading my story. id (
http://story.id/) like to tell you I'm independent,beautiful,smart,prideful,loyal,spontaneous,loving,hard working,down to earth,outspoken,an advocate for the peple i love,strong,driven and ambitious..Unfortanutely tho,im not sure what I am anymore because my chronic medical conditions have robbed me of my dignity,indepdendence,beauty,bright future,emotional ,phys,& spirital well-being.I despise that the truth is all there is to tell you about myself is that I am sick with rare conditions and cant get better with out your help.
I decided to create this profile because I've lost myself due to abrupt illnesses and am desperate for a shred of hope,faith,understanding, encouragment to help me get through what has been the hardest 15 months.No one my age understands what really being sick is to help me through this and it makes me feel constantly 'alone'.
I'm sharing my story to get support,hopefully help someone else too, get encouragement and support & help to get to the treatment at John Hopkins that i am absolutely desperate for.
I'm 25 and have recently lost everything that ever made me,me due to several rare chronic medical conditions.I was so blessed before my symptoms of extreme hair loss,rashes,fevers,myalgia,body exhaustion etc started.Before I got symptoms that something was terribly wrong, I had just finished real estate school,got engaged and was planning to start a family of my own since I was not given the close knit family I've always longed for. For months I was a "medical mystery". I had abnormal blood work,urinalysis,abn body functions but doctors couldn't determine the underlying diagnosis.
Finally,my nephrologist (kidney dr) tested me for Lyme disease and it came back positive with 4 reactive bands.months later, I still didn't show any signs of improvement after multiple cycles of treatment.At this point,I was diagnosed with Chronic Lyme disease. (the type that doesnt respond to treatment)
I started getting this painful rash that resembles sunburn,it's warm to the touch and dark red and causes my skin to be mottled with patchy red spots.It feels like my skin is on fire and is extremely painful.It is very noticeable and worsens at night.People stare at me if I have these 'flares' in public.Because of that,I dont go out at night at all because Im ashamed.i saw more than 20 doctors about these flares who would just put me on meds and 'guess and check' if they worked.They persisted,gradually getting worse in frequency and severity.
Finally,I got two skin biopsies which revealed an extremely rare condition called Lymphocytic Vasculitis.The condition causes my white blood cells,called Lymphocytes to accumulate in my blood vessels within my skin causing expansion sometmes leading to small ruptures of the vessels.The expansion then causes inflammation in my skin,provoking the red painful patches or flares. Even though this news was scary I thought the discovery was the beginning of the end of the mystery of what was wrong with me.It was only the beginning.The biopsies gave us a diagnosis,but its so rare,no doctors are familiar enough with it to handle it or educate me.I dont know ANYTHING about this condition.not even if its permanent..This has filled me with heartbreak,hopelessness,frustration and an inability to get better because my doctors cant treat something they dont understand.I have no closure because I have no idea when this will get better.
That diagnosis was given to me 7 months ago and since then more symptoms have surfaced,revealing more conditions.I have since been diagnosed with PCOS,autonomic neuropathy, an autoimmune disorder.
The Lymphocytic Vasculitis affects me the most because of the frequency of the flares,and the severity of them. The flares now last 2-4 days and theyre absolutely debilitating.Im in the ER twice a month,my schedule requires appts with various specialists 3-4x a week,ive lost 50% of my hair because of the inflammation,at this point,just 'existing' is a full time job because each day and night,even my sleep depends and revolves completely around all of the symptoms of my conditions.
Lymphocytic Vasculitis is a disease of the rare and genetic organization.My PCP reached out to them and they have advised me that John Hopkins is educated and capable of treating me.My dr wrote me a referral to go there but I need help to get there and get the help.The closest location is in Baltimore,Maryland and I live in Ohio.My only hope of having any sort of education,prognosis,treatment,or getting my life back is to travel to John Hopkins,states away.I have no income right now because its literally impossible to work around spontaneous flares and all my other symptoms and try to work around my dr appts.Im waiting on disability, but I've learned they lack interest in researching rare conditions,like mine, in order to understand what I endure everyday to even make an appropriate decision.I've also learned they're in no hurry to process claims or gather the records to come to an appropriate conclusion.My doctors and I agree that disability is going to be a long process and I may even have to get an attorney. I cant keep living like this with no idea of when Ill get any relief.n my current state,My quality of life is too poor for anyone who hasn't witnessed it to possibly fathom.my life revolves around symptoms.Every day and night depends entirely upon how I feel.Some nights the pain is so bad I cant even sleep.I really need help now.I've applied for transportation services for low income patients and everything Ive applied for doesnt provide travel/transportation and hotel out of state.I don't have any money at all and I don't have family to turn to for help.Ive never been one to ask for help with anything but Ive done evrything I could possibly do to get help on my own.I cant express my grattitude for any help I get.I am forever grateful for anyone who tries to imagine what I am enduring and has the ability to help me get the treatment I desperately need.I will be forever in your debt.
Thank you so much for reading my story.Although John Hopkins is primarily for my inflammatory skin condition,and not the 4 others,that help alone will give me a life worth fighting for and will give me enough hope to see the future as a little brighter. Even if you can't help with Any donations, I greatly appreciate any support.kind words, encouragment,true understanding,or Anything at all means a lot.
