About Me

  • Gender Female
  • Age 53
  • Relationship Single

My Story 0 Appreciate this

Its hard to say when it began, since I had first been Dx'd over 30 years ago with Chronic Fatigue Immune Dysfunction Syndrome -now known as Myalgic Encephalomyelitis-chronic fatigue syndrome (ME/CFS)) prior to what would become a long health journey of additional diagnoses...that include but are not limited to fibromyalgia, PsA, Arthritis, on and on the list continued to grow, with Multiple Chemical Sensitivities, Adverse Reactions or ineffective response to medications. However, since I am a self advocating patient and a researcher...now it all makes sense from the medical evidence of my history, symptoms and progression of disease. Being chronically ill for more than half my lifetime meant I had to keep awareness at the forefront of self care. This is my story summarized as best can do right now. At 17, my left leg went out from under me. I had a lot of woman medical issues that followed. By age 20 I started to have back problems and chiropractic care. By the age of 23, childbirth left me with a mental health history now recognized as Post Partum Depression but then was labeled as bipolar disorder. Within a year found a Nutritionist was taking 30 vitamins a day, and was diagnosed with the CFIDS/CFS/ME (which also now has medical evidence that includes the mental health misconceptions for that condition that has similar misconceptions of MS). My back issues continued to worsen, my energy levels waxed and waned. All sorts of medications were prescribed for pain.I was told I had degenerative disease. My Career ended early and SSDisability became my lifeline. By the time I was 33 I suffered from Urge incontinence and wore depends undergarments, had a tens unit, a walker, a cane and became a single mother with 2 kids. I had no choice but to push through. I cannot recall my first MRI with Brain Lesions, that Doctor said that for people with MS the lesions are usually in other places, and they did not do an LP (lumbar puncture) because of my pain sensitivities, yet all sorts of nerve testing and other tests were done. Every single MRI since that time has had abnormalities and changes of brain matter. Vision problems suspected but ruled out optic nueritis, Vertigo Vestibular Migraines with Aura, Nerve Damage, and well the list is just so long and even unbelievable to me. From the time I was 33 to now age 52, I have had to use a cane when extreme stress causes my Central Nervous System to go haywire.My neurotransmitters go on overload, I become hypersensitive during those times. My cognitive and executive functioning does not function, I cannot find the words to speak, or I stutter/repeat words. Other times I've literally simply could not and cannot get out of bed. Approximately every 2 years or so depending upon stress levels, diet, life changes and repeated medical traumatic experiences. (PTSD was also added to the list) I have to use my cane. Mobility issues come and go. It has been a real struggle when people in your life think that you have one thing but its actually something else and the medical professionals do not put all the pieces together or dismiss your concerns. It can be discouraging but you have to find the right doctor for the right diagnosis to obtain the correct treatment. I believe that I suffer from RRMS. A lumbar puncture was never done to confirm or deny the MS diagnosis, yet...I have experienced severe Muscle Spasms in my toes, feet, fingers and hands, at other times my arms or legs will do their own thing like a twitch sort of, then in the last year I suffered from a real vision issue that half my view was darkened, I was faint and nautious..it scared me almost as much as the MS Hug symptoms did and when you get a MS Hug it is not comforting to say the least...after about 10 of those that was the last moment I absolutely knew that the possibility of having MS was real. Still I try to deny or ignore, work through and against my own body that has been working against itself for years. Its been a long journey full of too many challenges to pick just one. My dreams exist and I have got Big dreams...but these get sidelined by self compassion, being a single parent, living at poverty level, in medical debt, with one thing left called hope. having to work part time in between my relapses or flare ups. otherwise I would not be able to afford to keep a roof over our heads and well I am not a quitter. It is really really hard to work. ( tried to quit one thing-smoking unsuccessfully, other than getting down to 5 cigs a day) I do partial fasting to reset my body system. I incorporated yoga, stretching, dancing, music, art therapies into my daily life and I PRAY all the time. So now my Hope is in a much bigger thing and healing has happened little by little. My dreams to do something to inspire people continue. My empathy and compassion for others has increased. And in comforting others or being able to resonate with health problems seems to be what being human is truly about. Connecting and sharing our struggles. thankful. And I care. What I say to other MS sufferers or any other Chronic Illness is this: You live in your body. You know what it feels like inside where no doctor or any other person does...so LEARN what HELPS your body, learn How to focus on the good things and hold on to them. the more you educate yourself, the more you can educate others and make a difference by influencing people in a positive way. That helps in healing. That doesn't; make the pain go away, it does not make your conditions disappear but...it does make inspiring and encouraging others a feasible way to do the same for yourself. DO NOT give up, DON'T give in...DO Self Compassion, awareness and Spread LOVE no matter what...Count Your blessings and remember...WE ALL HAVE A PURPOSE and a common thread. So TOGETHER WE RISE and RAISE AWARENESS; WE do MS WALKS WE SPEAK UP FOR OUR Selves and For others..WE can move forward little by little and PRAY for a world without MS until then lets keep fighting the good fight. Find support groups, call the hotlines, get with other people who understand what your going through and who are supportive...stay away from negativity or learn how to turn it into something positive. I am a people person. (except when I'm not well) And if a smile or a kind word and a prayer can help someone, then that is who I am and precisely what I do. What about YOU ? Love...Light...and Live...Be thankful.. Stay Humble and Remember YOU MATTER!!!!!!

Interests

Living Well with MS Caregiver Support, Employment and education, Emotional support, Healthy living, Mobility and accessibility
Getting Involved Advocacy
Research Research news
Hobbies and other interestsPlaying instruments, Art, Singing, Dancing, PRAYING, Laughing, Living.

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