CONTENT: THIS IS MY OWN PERSONAL STORY ABOUT HOW I LIVE WITH MULTIPLE SCLEROSIS, HOW I DEAL WITH IT, HOW EVERYTHING CHANGES DAILY. MOSTLY, THIS IS MY WAY OF LIFE. READ FOR GOOD INTENTION ONLY PLEASE!!!
Hi everyone I hope all is well! Summer is finally here I love the sun, being warm, being outside in nature, having my garden, basically everything but for us who have MS summer doesn’t like us at all. I’m half Venezuelan so, I’m technically made for warm weather unfortunately the other half (Irish) took over. Who really knows why we get MS but, statically data shows that people who live above the equator have higher populations of MS. I’m on the wrong continent maybe, if I move there it will magically go away. Think so? If so I’m pretty sure we would all live there right?
So like many others comes another summer and another “flare” or “relapse”. I went back and looked at my medical history and since 2011 every summer has been when I’m at my “unhealthy stage”, as I call it. I’m skinnier (won’t complain), sicker, have a flare or flare’s, exhausted, malnourished I could go on and on but you get it. My favorite time of year ruined by disease and illness, great. I know everyone who has MS is different, at a different stage, and basically in a different part of their lives. From what I’ve heard most are miserable this time of year while it supposed to be our extra time to spend with our children and families, being outside in nature, doing more active things etc… Instead I’m stuck inside doing home-work, being sick and exhausted, getting skinnier by the day I’ve 10 lb. already without trying I’ve been so sick and busy. I’m trying not to complain but more like vent and I say it how it is. I honestly love school, I mean I’ve been going forever it feels but, I love learning, having a profession, a passion for knowledge, making more money by spending it on student loans. I’m not sure if my profession is going to change or not though. I mean my life changes by the day which is so much harder than it sounds. I have 2 degrees and so close to being done with nursing (can’t apply to the program yet) but all I need is 2 classes and my clinicals and I would be an RN. It seems just stupid to stop now but, who wants to hire a RN whose health is different by the day at some stage of forever unhealthy. How can I be dependable? How can my brain take all of the training, pushing myself through years of study, missing out on life due to studying and working my ass off. I know I deserve this and I want this, I need this, my family needs this. I feel helpless at times when I’m supposed to be the helpful one helping the ill not being the i ll.
I have to find a neurologist a.s.a.p. because I called my local Neuro. to have an emergency visit because, I’m pretty I’ve been having a flare as to what’s been making me even sicker. He WOULD NOT see me which he says “it doesn’t seem MS related”, so I have no choice but, to sit at home and suffer in hoping its just my MS acting up. Thank GOD I have an awesome PCP but, there’s only so much she can do she’s not a Neurologist. My permanent Neuro. (means keeping no matter what) is located in Boston which is at least an hour drive depending n traffic and she is only at the Hospital 2 days a week because she’s traveling the world HELPING! I can’t go too the ER to get the IV of steroids I know I need because the closest possible one that’s any good is…..I honestly don’t know at least 20-30 minutes from the 2 closest hospitals around here. For the 4 years I’ve had MS not one time has anyone given me an IV of steroids during a flare. I’m forced to suffer in silence and wait it out while being miserable, and making everyone around me miserable too. I’m not even on MS medication right now because I was allergic to it and I don’t know if I want to try every one in the book just in case I might find one that might work. Absolutely disgusted with the healthcare system in this stupid NH state. I got screwed bad. So, now I’m hunting with my PCP and my attorney helping to find a new Neurologist that is remotely closer that Boston than I can see who takes Medicaid. Yes, I have MEDICAID because, I’m not healthy enough to work at the moment. I should just tell everyone now (not sure why I’m so emotional about it), that I was denied disability first round, as most do but I have an attorney. Going for round. The letter contradicts itself as well it stated, “even though you have severe health impairment:, including: Multiple Sclerosis, degenerative disc disease, anxiety, depression, fibromyalgia and ADD (to say a few), yours aren’t severe enough to meet our requirements”. Holy crap what more do I need to add to my list of illnesses for you people who don’t know me to say I can’t work at the moment but, still have a family to support while being a student? I have 2 degrees going on 3 do you think I planned for this? I rather go to work believe me! Who the hell would rather sit at home wondering what’s next? Will I lose my vision completely next time, maybe the numbness won’t go away, maybe my family and friends will leave me because I’m useless. That’s only how I feel sometimes but, I’m sure you know what I mean. I’m not suffering in silence anymore, I have a voice and I’m going to use it and it will be heard not only for me but for every MS WARRIOR out there!!! COUNT ON IT!! Again, “don’t take my kindness for weakness”-awesome quote.
I know my other true love is writing it always has been and having MS has made me do it more and become better at it. I know I’ve said this before but, I truly believe that since having MS I have found myself, my strength and weaknesses, my passion, joy, true real honest friends, how far I can push myself so I know my limits, and most important how to be happy when unhappiness was my life for so long and disliking myself because I got (many) health issues especially multiple sclerosis. I always had the feeling that I was put here to help people but, I know that I can do this many different ways in many different forms. I’m happy if I know I’m truly doing something for others who appreciate it (or will eventually), loving my job, and mostly again helping my family succeed and giving mine back. Mine? I mean giving back for what I have already received, like “paying it forward”. That’s just me though of course!
♥ ONE LOVE ♥