Last reply 1 month ago
My journey with ms

I would like to tell my journey. 2010 my husband was an over the road trucker driver. I was a cosmetology instructor walking 4 miles a day. 4 kids living at home, depending on me. One morning started as usual I woke up at 5, took a shower, as I was doing my makeup, I noticed something was off, my vision in one eye. I finished getting ready for work, woke my kids up for school, started my 20 minute drive to work only seeing out of 1 eye. I called my husband who was 3000 miles away, like he could help. I was crying telling him I was blind in one eye. He said get to the doctor, I told him after work. At the time I couldn’t miss any time at work, if I did Bill’s couldn’t get paid. I went in my bestfriend and supervisor said Darren called get to the doctor, I said at lunch. At lunch I went to my doctor, he was no help, he said go to an optometrist. Later that day I went to the optometrist. Who thought it was a torn retina., he sent me to an eye surgeon. I sat there alone scared, both eyes dilated, great now I couldn’t see out of either eye. After the exam the doctor said we need to do an mri. I said why, response you either have ms or a brain tumor. I said I dont like those choices can I have another? After the mri he said you have ms. Now for 6 years I showed symptoms, regular doctors explained away. Now things made sense. I was still terrified and alone. I couldn’t explain the unknown to my kids, I would cry but only in the car or shower, I couldn’t let anybody know how scared I was. I would go to work. On lunch breaks for tests. When my 1st neurologist did the spinal tap, called me and told me I had to go in. On my lunch I went to see her. After she confirmed the ms, everything she said after was a fog. I went to my car and cried. I called my husband who was across the country, dried my tears and went back to work. Again I was alone, I didn’t understand ms. I didnt know my future. My employer was wonderful they did everything to help me. I continued to work take care of my kids, I vowed not to give in. Pretty soon I had to cut hours at work, 2017 my neurologist confirmed 10% nerve damage in my arm not good for a cosmetologist, if was time to end my career. In 2 months I had to stop driving, stop working, Bill’s were piling up , my husband who started driving local is working 14 to 16 hour days, my landlord was harassing me over my esa dog and a window ac unit we used to make sure my room stayed cool. I woke up stared at my husband sleeping, exhausted, and realized my life sucked. I thought everyone would be better without me. I grabbed my pills poured my sleeping pills in my hand, at that moment my esa dog started barking, he woke my husband up. He pried the pills from my hand, we called my uncle who is a psychologist, and my son who is getting his Md. In psychology. They both said get to the hospital. I wanted to go to my brother’s birthday party first, hoping it would snap me out of it, wrong it made things worse, watching dancing and everyone having a blast. I looked at my husband and he said let’s go. I spent 72 hours thinking of my actions talking to people who knew what the books s as y about ms, but dont understand what it’s like living with it. Present time, I still cant drive. I can barely walk, my landlord is still difficult with my needs, 6 months hopefully we can move. Anyway that’s my story. Sorry if its dragged out.

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vixen
1 month ago

Hello @kim_speidell_cox, sound like you’ve had a pretty rough time of things, but you’re still hanging in there. I don’t know from your profile where you are, or if you’re on meds. You’re in good company here, I’m sure most people would recognise your frustrations. You can find the most knowledgeable person on MS, but that does mean they understand what it’s like to be us. I hope you get your housing situation sorted soo, sounds like you could do with a fresh start. You have a lovely face, keep smiling. And keep posting, it can be really therapeutic x


stumbler
1 month ago

Hi @kim_speidell_cox and welcome to our exclusive club.

We can all empathise with your journey to diagnosis and beyond. We’ve all had that feeling of being damaged goods and worthless. But, we are still valued and loved, warts’n’all. We are still the same people that we were last year or 10 years ago.

No-one knows where life is going to take us. And what twists and turns we will encounter as we go.

Live healthily, eat healthily and manage stressful situations. Stress, whilst it can’t be avoided, is a major agitator of MS. So, always assess stressful situations, asking yourself whether it’s worth damaging your health.

Life does go on. Our aspirations can still be achieved, maybe not in the way we planned, but they are still achievable.

Stay strong.


edmontonalberta
1 month ago

@kim_speidell_cox

Next time you post – paragraphs please. My reading skills work better in chunks rather than a long ramble. 😉

Having said that, found your Facebook page by Google Searching your name since the link on the shift.ms site is broken. Nice family photos – your dog Victor appears to be a bit of a Devil (I can spot those a mile away). LOL

If you do not mind, please update your shift.ms information. What type of MS do you have? What Disease Modifying Treatments (DMT) are you using? For example, I have PPMS & get nothing from the medical field – I completely changed my diet which appears to have stopped the disease progression.

Thinking of you & your situation…


merfield
1 month ago

@edmontonalberta, I’m keen to know what you’ve changed your diet to. I would like to slow progression if possible.

@kim_speidell_cox, what a ghastly story…..& with 4 children! MS takes some coping with but cope we must. Life takes coping with. We don’t know what’s round the corner so live in the moment and make the best of each minute of each day…..xx


edmontonalberta
1 month ago

@merfield

Hope you have a sense of humor – at your age, every day is a blessing.

I went to a funeral the other day for a Slo-Pitch buddy of mine ( he lived to 84) – the best part is that he was still playing ball at 81 & dropped by the diamonds last summer for a beer & to socialize. To put things into perspective, I lost my first wife when she was 32 from Scleroderma.

Every morning the first thing in my stomach is Vitamin D. And if I have not had fish for a few days, Omega 3-6-9. My present wife makes me fruit Smoothies to drink daily – fresh fruit tastes better but I’ll take frozen berries. And a variety of nuts to munch on while I am watching TV.

Bread in scarcity, no milk whatsoever, no red meat (i.e. Steaks or burgers) whatsoever. As much fruit & vegetables possible are in my stomach daily; fish (wild Salmon) whenever we can afford it.

Plenty of fluids – the problem is that I need to live near a washroom due to bladder challenges. Life isn’t perfect (sometimes embarrassing) yet I enjoy the good while dealing with the bad.

Hope this helps.


merfield
1 month ago

@edmontonalberta, at my age with MS a sense of humour is essential😉. Thanks for your ‘diet’ – it’s not far off mine apart from vit D which a friend with MS reccommended but I don’t take. As yet! She takes 4000 iu daily which sounds a lot to me but with lack of winter sun in the uk, maybe that’s ok. I’m more or less a vegetarian but sometimes eat fish or chicken. Omega 3 6 9 sounds a good idea. Bladder challenges I know about – not good but doable. But hey, we keep going don’t we!!!? Thanks again. xx

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