My Medical Journey- Part 1

   Many people have asked how I got into Art, and to be quite honest I would have to tell you a very long story to explain how. This story is about my medical journey, and I want to take you on a multi-part series with me, my last four years of life, and tell you how I landed with a paintbrush in my hand, and a canvas in front of me. I have hope again, something to look forward to, a sense of accomplishment, and feel like I am finally contributing to this beautiful planet again. I am finally feeling like ... ME! This will be a several-part series. So here goes nothing.
Part One of - "My Medical Journey."
My Medical Journey began about four years ago. I was on vacation in Texas visiting family and began seeing flashing lights, this was scary on its own. Soon after my vision started to blackout, this had never happened to me before you the way.  I did not want to ruin the vacation and thought I was getting a bad headache, or maybe heat exhaustion, who knows? I kept it to myself and went on with the vacation because I so badly wanted time with my family that I missed so badly. We spent almost 2 weeks in Texas, and in that time my symptoms progressed, I began to have whooshing in my ears, and my vision was getting worse. I finally told my husband what was going on. I told him my head was throbbing like there was a vice grip on it, and told him what was going on with my vision. He said maybe it was a migraine, but I needed to get in with an eye Dr as soon as we get home.

We finally returned home, so  I finally saw an eye doctor ! They looked into my eyes, and the Dr, a very young doctor, looked in disbelief. He called a senior ophthalmologist in, as he was unsure what he was looking at. The optic nerves were swollen and he thought I had something called IIH- Idiopathic Intracranial Hypertension. He was in shock as I was not obese .... so typical as this was known as the obese women's disease , I can’t stand this is how most doctors think of this condition . Not true at all. It can affect men, thin women, and children, doctors are so very misinformed. So the next doctor comes in and agrees, but wanted me to go to a neuro-ophthalmologist, as many other illnesses can have these symptoms. My mind was all over the place. I made the appointment, and the waiting game began. I am a mom of 2 very active kids at this time, working at a busy job in finance, my husband was a special operator with 13 deployments under his belt! I made it my job to be our family's glue. I did not allow myself time to breathe, much-less give myself sick days.
I finally get in with this guru- eye Dr- haha. He takes a look at my eyes... says yep the optic nerves are swollen, and I would bet my paycheck you have optic neuritis, and that goes with MS. WHAT!? No One has said this! He has to be wrong, I think! I said what about this IIH thing? He says, well you don't fit the description. I would say MS, he says. Then says , like I said I would bet my paycheck on it. My husband and I walked out of that appointment with our heads hung down in disbelief. This was our Guru, the specialist. No, I was not taking this answer, this diagnosis.

Soon after I went to a neurologist. He says you need a lumbar puncture, to see if it is IIH, and we will start you on IV steroids just in case it is MS, it will make you feel so much better. Ok, this is 2 doctors, telling me this is MS, I will give this a try, but what  can go wrong!? Right? Well, I had to wait for the LP, so in the meantime, I start getting these IV treatments before going to work, and trying to keep it quiet, trying not to make a big fuss over it. What a mess. I started throwing up, losing my hair in clumps, my head was throbbing, it was a nightmare. If only I knew then what I know now!! I will get to that later. So My boss is giving me a hard time as is my  co-worker about missing work for appointments. They keep saying ... How much work do you need to miss, I mean why can’t  they figure out what is wrong with you, we have lives to ! Way to be supportive.These are  women I have spent every day, all day long with, that was my family away from my sweet babies, and husband, I just could not believe it. I would leave and cry, I would go home, and smile in front of my family like nothing was wrong, I would go into the shower and cry some more, I was on an emotional roller coaster. I had no idea why my body was betraying me, and now work was a mess, I was trying to hold on to the last thing I held dear my family.
So finally, I go in for the LP. Go figure, CSF opening pressure was extremely high (the sign of IIH, not MS), but to confirm we sent fluid off to be tested. No wonder the Steroids made me so sick, they are used to treat CSF leaks, and have the opposite effect on people that have IIH. I found this out years later. Speaking of CSF leaks, the LP gave me my very 1st of many. My head started hurting so bad, that I started vomiting, and could not stand up straight without my head throbbing. I called my Neurologist, and he said I would need a blood patch. This is a procedure where they take your blood and do another Lumbar Puncture and patch the hole that the needle has left in the dura in your spine protecting it from CSF fluid escaping. I felt immediate relief, but it was short-lived, as I still had a leak and would need to go to interventional radiology at Duke. This started me on months of being bed bound... to be cont.

             I would love to hear your thoughts, so make sure to comment below! Xo- Deanna