of falling…
Does this mean I should use my Wheel-chariot all the time? No, no, no… I can still shuffle 18.2 feet. I will do that until I cannot any longer. But it hurt today. Did not hit my head, but landed hard on my back. Medication, sleep.
Short and sweet today… good night!
Blessings and Hope!
IF there was a way to cure my progressive MS and/or control it, I’d have been the first one to find it!! There is NO cure for MS. Yes, it can be controlled, remission in Relapsing Remitting MS [rrms] Yes, the right diet, exercise etc is good for me and everyone else. Sorry, I cannot exercise like everyone else. I have to use a motorized pedaler for my legs. I CANNOT pedal without help!
Protein shakes, diet shakes, whatever you wanna call em are NOT real food. They are processed ingredients. Whey protein is dairy based, and in my research the less the dairy, the better I feel. [less dairy is better for people with MS] Aspartame, Stevia, Splenda not good! What do you think makes their appearance white, bleach! Our bodies need real sugars, good sugars, raw sugar. It really is common sense. Things man made are not natural and do not belong in our bodies. I believe food is a big part of all the disease in our world today. You can go with me or not on this one, I do not care. I’ve done the research, hours and hours of it.
I’m jazzed if putting this crap in your MS filled body works for you, but do not tell others they can ‘heal’ their bodies by doing it. Shakes will not your body heal!! Especially if part of your miraculous discovery goes along with someone buying this product off of you. RRMS people can be in remission forever, there is no telling why or how, it just happens. I pray that they remain there and this lifestyle works for them. But do not ‘sell’ false hopes to others.
Again, I’ve done the research and eaten the RIGHT foods with minimal exercise, lost the weight and felt tons better. But, for some of my MS symptoms, I need the medication. Do, I want it, no. It’s a necessity. I tried going off of all of them and almost took my own life. No shake or workout is going to heal my progressive form of MS. I do appreciate the thought of ‘go check this out’ but not when the advertising gets dangerous.
So please people, do your research, find the best route for you, but do not act as though it is the only route. And inevitably, if they want you to try the product and they receive some kick back….well, nuff said!
Soapbox off!
Blessings and Hope!!
Now, while I know a positive attitude is ‘healthy’ that does not mean I have to be positive all the time. My friend Vicki pointed me to fabulous blog;
http://www.guardian.co.uk/lifeandstyle/2010/jan/02/cancer-positive-thinking-barbara-ehrenreich
Lines like ‘enough of all this positive shit – let us just adjust and rage and kick ass if we want’, had me peeing myself…literally!
I am so happy for people that can be honestly positive and happy. I think it’s awesome. I was there once. But, sometimes in life, shit happens and sometimes it’s not positive. I’m positive I have primary progressive MS. I’m positive it helped to cause my degenerative disc dis-order, fatigue, incontinence, tremors, spiders [feeling like something is crawling all over me], migraines, depression, eye problems, constant numbness, oh and the little issue of no longer being able to walk. So I’m positively pissed off and angry. Is that really so very terrible?
Just because I am not always positive does not mean I’m not happy. Does not mean good things don’t happen to me. I am happy, most days, and good things do happen to me.
But when well meaning [idiots] tell me maybe if I was more positive I could heal my body. Really??
Don’t get me wrong, most people do mean well. But some are just psycho, new age, get stung by bees, snake oil sales people. And those people can be ‘deadly’ to someone with a true illness. People told my friend Vicki to drink her own urine for her cancer! WTF is that about. My sister had stage 3 breast cancer, if she had listened to these morons, she would not be here right now. We all know and hear that many hardcore medications are poison, but it saved my sister. She is in her 6th year of remission. Drinking urine would have killed her. She is an R.N. and knew what she had to do to survive, like Vicki. I’m very glad they did, and they are still here!
Others told my friend Carol maybe her cancer came because her faith was not right/good. WOW!! I was told the same things. Or like the moronic book, The Secret, I intended it. Really??! And people believe this shite? I’m thinking they must not be the brightest stars in the sky! I’m POSITIVE they have mental illness! There, some positivity for you! 😛
I’ll get off my positive soap box, for now.
Blessings and Hope!
SMACK!!! That’s what it felt like for me when I was told I had MS. Fear, anger, depression, confusion, why, why, why, and a whole bunch more expletive feelings which I will not mention! 😛
I see so many around the net with their well meaning advice to MS newbies. The problem is they are putting their MS on everyone else. Meaning, what happened to them will surely happen to you. And, yes, similar things may happen, but never the exact same.
I watched a video one day and the woman said that MS IS a progressive disease and at some point all will progress! Sorry, BULLSHIT! There are people who have MS and never ‘relapse’ or progress. They can stay in remission and never have another attack. This is the type of information that can send a newbie into a very quick state of depression.
We are all different in our MS as we are in our lives. No two people will have the same exact journey with their MS. It may be similar at times, but never the same.
My advice to newbies, listen to no one, not even me! lol Do your research, talk to your doctor, look into the medications to see if they are right for you. Research, research, research.
What I will say straight out, eat right [no more sugar free, no processed foods, etc], light exercise, yoga for MS, contact your local MS Society, find an MS counselor. My counselor, Margo, has helped me through many a hard time in the past 11 years. Find out about the medications, study up on them.
For me, and only me, I no longer do any injections. There was no proof they helped progressive forms. For me, and only me, the side effects were not worth it. I do however take medications for pain [yes MS can cause pain] and depression/anxiety. I did injections for 7.5-8 years. Since being off of them for 4 years now, I do feel better. BUT, that is my journey and it may not be yours!
You may never end up in a wheel-chariot, you may never need walking devices. So, do not let others scare you. Get your information on your own and never let anyone tell you what you need to do for your MS journey.
I wish you…
Blessings and Hope…
My mini disclaimer: These blogs are from my perspective of my life with Chronic Progressive Multiple Sclerosis. I am not a doctor and will never tell anyone what they should do for their MS. We are all different in our MS journeys as we are in our lives.
I’m going to start a series of blogs on, you guessed it, Living with MS. Each blog will have a theme to it, ie: newly diagnosed, medications, family issues, friendships, exercise and nutrition.
My mini disclaimer: All of the blogs will be from my perspective on my life with Chronic Progressive Multiple Sclerosis. I am not a doctor and will never tell anyone what they should do for their MS. We are all different in our MS journeys as we are in our lives.
————————————
My Journey for the truth began after the birth of my son in 1994. I was overly fatigued and started to fall quite often. It was chalked up to bad ankles [from ankle breaks when I was younger] to postpartum depression. I had been diagnosed with CFS in 1986 at the age of 22, so they added that to the list. In May 1996 my twin daughters were born and walking became quite hard. I slept downstairs with the girls in their bassinets for the first few months. Fast forward to July 1997. For months my left ankle would twist and I would have serious trouble walking. I had been to the doctor any times during this year and told the same things as before; bad ankles, postpartum depression, CFS. Finally I got mad and made yet another appointment. This time I saw a Physicians Assistant, he talked to me for a bit then asked me to walk for him. The next thing I knew he was setting me up for an MRI…a What? The next month was kind of a blur. Mri’s, evoked potentials, spinal taps. Then then the results, Mrs. Radford, you have Multiple Sclerosis. Silence!
I do not remember too much of the next months. More tests, learning how to inject a 1.5 inch needle into my thigh, crying, denial, more crying, then complete anger! At that point I had ‘the good’ MS. REALLY?! Relapsing-remitting MS. I may never progress, might be in a remission for forever even. Well, my remission never came, but my progression did.
During the next 7.5-8 years I got two second opinions at the UCLA MS Clinic by their top MS Neurologists. Damn, both said, “Mrs. Radford, you do in fact have MS.” Bummer!
From 1997, I went from ankle braces to crutch canes to walkers to manual wheel-chariots to my now power wheel-chariot. Not really where I expected to be at 45 years old.
So, in a quick nutshell, this begins my journey. I am in the battle of my life. For some, this may not be the worst battle out there, but it is my battle and it is happening to me, so it is the worst out there. Living with MS is a journey for those with MS and the people who love them. Maybe, in some small way I can help someone through a rough time or even share a few laughs. Hope to hear from you.
Blessings and Hope…
Making it Through the Rain 