Tag: love

I am home from Vanderbilt. It was a long appointment, and a very difficult one for me.  The travelling was one of horrible experiences to date. Leaving Ft. Lauderdale airport,  I was refused a wheelchair because I refused to check my carry on bag. By the time I made it to the gate I had nearly fallen 3 times, and was completely exhausted.  The lights and sounds made my headaches excruciating.  Being in an upright position for so long, affected my spinal headaches, so that gave even more joy to my travelling. The travelling had worn me down, and I was at my worst by the time I got to Vanderbilt Thursday morning. I stayed positive, rather them see me at my worst, than my best! Because of the cold, I was seizing even more than normal, I was also falling a lot more than normal. I arrived at  Vanderbilt  at 8:30 am, I was tired, nauseous, shaky, and just feeling like crap. We headed up to the 5th floor, my appt was at 9:30, but due to not knowing the area or traffic we left our hotel a little too early! We checked in, and sat down to wait. I was called in for the autonomic testing. They were to do the Valsalva testing, breathing testing, and a tilt table, minus meds.

The nurse shut off all the lights for me, due to my sensitivity to them.  As the nurse finished hooking me up to the heart rate monitor, I started seizing. The pain was horrible, and my mom was trying to comfort me through it. Apparently I stopped breathing during it, so that scared her. According to my mom, who is a nurse, and the Vanderbilt nurse my heart rate went from 67 to 156 during the seizure.  After that I was out of it for a few minutes. The nurse continued hooking me up to the monitors. She couldn’t get a reading on the continuous bp cuff on my finger as my hands were so cold, she had to use hand warmers and then use a baby cuff. LOL.  As we started testing She was patient and comforting. We did the breathing test, where I had to breath against resistance, my goal was to hit 40, I didn’t even make it to 20. OOps. I became dizzy, it was awful. The other test was breathing in through nose and out through my mouth, I kept mixing it up and getting confused, and dizzy. This got me frustrated and near tears. After that was the tilt table. She tilted the bed up and almost immediately my nausea worsened, my chest pain worsened, and my dizziness increased. I kept saying I feel like i’m in Alice’s rabbit hole, according to my mom. I became very disoriented and confused, lethargic really. The test was finally over!  After that we could eat and wait for my appointment with Dr. Robertson.

So the moment we had been waiting for, for 6 months was finally here!!  We were taken back around 2:15, pm to meet with Dr. Robertson. I immediately liked him. He listened as I explained everything, how I felt, my daily routine, my limitations. He genuinely cared. He then asked me questions, and my mom questions. I tried so hard to keep up, but I kept getting confused and repeating myself. He was very patient with me. He then started his exam of me. He paid very close attention to my hands, in particular to my fingers, checking for inflammation. He also was interested in the severity of my photosensitivity. We spoke of my symptoms and how they affect my life. What’  I’d like to change. I explained I want to walk down the aisle, I want to dance with my husband for the first time. I want to be able to have a conversation with someone face to face without getting confused. I want to me able to go into the sun without feeling pain or passing out. He looked through the records I had with me from Cleveland Clinic. He was very interested in my case. He says I definitely have an autonomic dysfunction, but that’s not the only thing going on. We asked about MS. We waited with bated breath. His response was what i’ve known in my heart. That it’s a huge possibility. He suggested I get my MRI of my spine, he feels that’s where the lesions would be considering what is affected in my body.  I still don’t know if I’ve processed everything. He wanted my records, since Cleveland Clinic did not send updated copies prior to my appointment. I told him I will make him copies, and send to him. He said he really wants to go through my records page my page, and really read them and make his conclusion. I walked out  numb, not knowing to feel. He wants to stay in touch, and keep him updated on what we find.  He was so wonderful. By the time we left it was after 4:30pm.  I made the copies Saturday, and sent them via fedex, they will arrive tomorrow. I’ve already called his office and told them.

My Cervical MRI is scheduled for Next Monday, as well as seeing Dr. Tandri at Johns Hopkins. Finally, i’m getting closer to answers. I’m scared of what the MRI will show, I’m scared that in my heart I know what it will show, and you know what?? It’s ok!! If it is MS, I still won’t let it beat me down!!  My mom was so supportive through this trip. My dad has been amazingly supportive at home. My boyfriend worries so much and supports my fight every single day. My son loves me. Despite this illness I have a lot to be thankful for. I’ve accepted I may never know my true illness, while it will be awful, and could be dangerous, I have faith. I have the love and support of my family and friends, for that I thank you all. Those that have been on this journey with me, cried with me, laughed with me, I thank you from the bottom of my heart! My journey isn’t over. I still have a ways to go, and I’ll continue this fight as long as I can.