*sorry so long* update... I want to say thank you to all my supportive clients during this challenging time. After at home IV infusion treatments,8 days of plasma exchange in the hospital w/ the best nurses ever at OLOL I am now one week into my MS medications. I have definitely had my ups & downs. Im pushing thru & remaining strong as I can even though not walking correctly at times, losing feeling in limbs, unable to hold things steady, driving or doing things for myself is not always an option depending on the day. My body has been thru a lot here recently w/ all its been put thru also the Intercranial Hypertension causing severe headaches & the extreme pressure. I will be injected into my head on the 19th to hopefully help the fluid on my brain so I ask for much needed prayers. Not having family near makes it even tougher. They are 3 hours away. So its just me, some really phenomenal friends, stepmom who works nightshift at the ER almost 1 hr away that barely sleeps to care for the upkeep of my home, neighbors, former bosses/co-workers bringing food,clients & people who I havent seen for years that stepped up to the plate when they didnt have to. The MSaccess team who provides my medication explained it takes 17 weeks for the MS med to really coat the nerves of my system or my myelin sheath. So it takes that long to enter my system & this girl has zero patience (Based on me being so sick I believe its in my system😷!) Im truly just exhausted, taking a bath is a chore. Ive had about 4 good days since September when I do Im like a dog in a vehicle wanting to hang their head out the window smelling the fresh air! As I tell someone what to write Im laying curled in a ball in my bed bc today is a bad day. I cringe at the fact of having to even eat bc that means I have to take all this medicine. Thats the only time I eat. But thats okay, many people have it WAY worse. I may cant feel my right arm & hand today but Im alive! Tomorrow, maybe I will! Each day is different. I will beat this thing! In 3 months my neurologist will scan my brain/spine to ensure there are no more lesions & the retina disease specialist will perform the OCT test again on my eyes this will determine if the medicine is the correct one and doing its job. MRIs & OCT will be performed pretty frequently (every 3 mos I believe) with multiple sclerosis thats how they ensure no more brain damage is happening & the medication I am on is the correct one. I may feel fine but if lesions are visible then its not working. Also, from time to time I will relapse. But Im a tough cookie & a great disguiser of pain, Ive been feeling awful for 3 years and passing out and yall never even knew 😉 Im praying to stop seeing yellow & green here soon! My goal is to be back to work because this is how I survive. Im single. I am my own livelihood, this is my only way to pay my bills & its scary to think this gift I have is no longer doable. I refuse to think that. BUT even when I feel the slightest bit better shooting wont start before I finish and complete the few of you who are waiting for delivery of what was undone before I got very ill. That will come FIRST and foremost. I had a few question why I didnt say what was going on or post it. Honestly, I didnt know what was going on. I didnt feel it was anyones business, I was scared, alone, I was waiting on results,cultures from the spinal tap and at times I was so sick with so much fluid on my brain it was the furthest thing from my mind. I thought I was dying or wanted to die. When they did the spinal tap and saw my opening pressure was high the headache and vomiting made complete sense. But why, they still didnt know it was a waiting game on the results. I just kept trying to get editing done in between appointments, passing out, barely seeing and being very ill. Between losing feeling of arm in February, unexpected spine acdf surgery in March with 4 months in a neck brace, recovery & PT up thru to August/Sept & not really recovering (now I know why I wasnt recovering) being diagnosed w/ Multiple Sclerosis October 30th. I have had a very tough and slow year that was originally booked but I had to cancel a lot. I took on more than I should thinking my body would recover Bc I thought they finally found the issue in my spine. When I didnt recover. I knew something was really wrong. This entire year has been all so unexpected. So I apologize for assuming I would be better and taking on too much & believing in myself. I didnt know. Anyone that knows me and my work ethic knows one thing to be very true. Im a hustler and worry myself sick over being perfect and making people happy. You tell me to jump I say how high, unfortunately, that will change I have grown a thick skin thru all of this and learned people love you when you have something to give or offer. I have always gone over & beyond, sparing extra time time, discounting, giving to those who stuck by me but when the shoe is on the other foot & I have nothing to offer things change. As far as my work. I provide my work only and fully. I want to give you what you paid for. The quality you deserve. You will be in love with it. I promise you that. I always credit my clients for my mishaps and give in numerous ways. Many will vouch for that. I didnt get this far this quick for nothing. I didnt ask for this to happen. No one ask for what God gives to us. We can only ask him to get us thru it, heal us and help others to understand. This circumstance is out of my control. I pray to be back and even better! At the moment. Im still grieving and wrapping my head around this diagnosis & what is going on with my body when it doesnt move. Staring at my handicap tag telling myself I will not let that define me. I tend to write backwards or not make sense at times. Thats the cognitive part of this. I swear Im a smart gal and college grad. My memory has caused me to forget very important things which I never do. My hands are very shaky as well from my spasticity so touching my computer is a no no bc I do not want to hit delete I would never forgive myself. My doctors have told me to focus on me and keeping my stress down and let the medicine work. I have gone many years without any form of medicine to treat this disease. For once I have to take care of me. I am currently in occupational therapy and physical therapy 3x a week to help me with all of this. Thank you all for the kind cards, words of encouragement, donations to gofundme, pics of the little cuties I love to photograph. I cant wait to have this body somewhat back to normal. I may never be able to be at the speed I was again and I may have to limit what or how much I took on but I refuse to say this is over. I may have MS but it will not have me!
Posted on: Sat, 13 Dec 2014 19:12:18 +0000
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