Last reply 8 months ago
Hello how’s your day

Hello,

How is your day?
I felt pretty fatigued today and recovering from a cold but I’ve been to see a chiropractor . I am sore now . First visit . He’s got my mri scans to look at now .Hope to feel better soon .
He is a real nice and friendly chap and does a lot of work in America.
Interesting what’s going on over with the opioid abuse prevelant because of pain . Medical system different over in America.
He knew about the stem cells and I honestly felt teary the other day when the trials showed they were effective but now if you want it it’s accessing it .

There’s my little be of sunshine ☀️ For the day

Rachael

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vixen
9 months ago

Hello @rachaellouise, how are you doing? Yes, the stem cell stuff is really exciting. It’s available already if you have fifty grand to shell out, which cuts most of us out! Ocrevus will hopefully be approved for the UK. My sister has been told for the last year that she would be highly eligible for it but that it might not be available within her area and that she ‘might have to organise it for herself.’ Whatever that means…..


rubeus7777
9 months ago

@rachaellouise hello to you and I hope your day is going great. Yeah it’s a shame that the stemcell treatment cost a pretty penny of the money out of your pocket. Insurance should definitely help out if not pay for it because it should be listed as every other treatments.


rachaellouise
9 months ago

@vixen you could try to raise capital through funding page …..

@rubeus7777
Hi – your right … it should be … stem cells can help other conditions too so I don’t understand why it’s not listed .

Rachael


nutshell88
9 months ago

Sleepy all day lol insomnia now 1 am


rachaellouise
9 months ago

@nutshell88

Hi there how are you doing ?
What have you been upto? Hope your well 💋❤️


aabreu
9 months ago

Hi @rachaellouise read your profile. Are you really on no treatment?


daybyday
9 months ago

I like this post, because it feels important to have at least something you can name as a good thing each day. The stem cell research is very promising, and the fact it does cost less than many existing treatments (but also requires isolation, and time off work if you work, and family/carer help, and a lot of other things outside monetary cost) can make it complicated, but hopefully this will be approved one day for more of us. Reading the news made me wonder if this ever becomes more available, if I might one day actually be able to get pregnant and deliver without worrying about relapses and going off DMTs.

I am slowly learning the balance of now having two part-time jobs in different offices. Tired, but I have had a few days so far, and continue. My small thing tonight was in being able to rest and in cooking myself a nice, simple meal.


nutshell88
9 months ago

I’m doing well thanks @rachaellouise ♥️💋 how about you how MS and life is treating you my friend 🌸


rachaellouise
9 months ago

@daybyday thanks for seeing what I am trying to do.

Yes I worry about pregnancy too.
How old are you ?

It really feels good to cook a homemade meal. What did you make?
It seems challenging at times but it’s great when you can.

Your right if you focus on what you have done in a day than what you haven’t it mounts up to a lot and actually can be more productive and meaningful
It

Rachael


rachaellouise
9 months ago

@abbreu – no I am not on treatment . So many side effects to those drugs. Its weighing up the risks.
I have changed my diet and changing my lifestyle at the moment to see if that helps. I am following a diet and lifestyle protocol , are you ?

@nutshell88 – you know girl bobbing along lol. I am okay . .. how is your ms and what have you been upto ?

Rachael 💕🙏 xx


aabreu
9 months ago

@rachaellouise
Hi. I’m not on any particular diet. I’m on steroids right now.
All the drugs have risks. The stem cell treatment come with the high possibility of becoming sterile. You mentioned about having a family, so that option would probably be down the list. Most other drugs don’t come with that risk.


rachaellouise
9 months ago

@aabreu

Maybe you could check out a protocol.
I am following the Wahls protocol. Then their seems to be oms and swank.
Also I was told by a neurologist Mediterranean is also the way forward.
I incorporate other people’s work like Brain Grain so no grains. Dr Grundy so no high lectin foods. All foods have Lectins some are higher than others.
I take bits from all … but I stick to Wahls protocol and what fits in with that .

Main things that they all have in common is plenty of vegetables , fruit but moderate because of the natural sugar. Also gluten and dairy free .
I don’t eat refined sugar or processed foods.
Then after diet their is the lifestyle

It’s a big part of things

1 stress and the mind
2 sleep
3 exercise
4 nutrition

If you can get a handle on those then you will feel better and live better with ms .
The hardest thing I find is stress and the mind . It’s what you say to yourself and your thoughts … it’s often pressure I place on myself not a outside force .

Rachael


aabreu
9 months ago

I need to do something about my diet. These steroids are making me blow up like the Tsar Bomba. laugh.

Your right about all those things. Lifestyle is important. Stress is a real killer.
I’m in the camp that thinks this disease needs to be treated early and treated hard.
With drugs like Mavenclad and Lemtrada and Ocrevus, we truly live in a good time.


daybyday
9 months ago

@rachaellouise

I’m actually 37, but my situation is complicated. Having been with someone for years who suddenly changed his mind on parenting. Ugh. And other issues. But we’re seeing if we can figure things out. Then, of course, last year, MS decided to present itself in a way that could no longer go undiagnosed.

Since I have altered sensation in one of my hands, I eventually noticed I had been hesitating in terms of chopping fresh items and otherwise just not cooking as I did before. I’ve always loved cooking. So I’ve been working on a few things -including the stress relief and focus that we need to keep in mind–and just doing it. So, last night, I made a simple thing – a bit of chicken, two types of fresh mushrooms, which I chopped, and a little fresh avocado. Last weekend, I diced a whole eggplant and then more mushrooms. Trusting myself to do what I love has been rewarding. So what if it takes a little longer? 🙂 Plus, it’s the best way to make some diet adjustments I’d like to make.

@aabreu

That is similar to what my nurse said when we were discussing and setting forth DMT orders. “It’s a good time to be diagnosed.” Not in the sense that this is good overall, but that research has come so far and outcomes can be better. My mother was diagnosed in the early ’80s and it is a much different time.

Didn’t know the stem cell procedure comes with the rick of sterility. Either way, I would be perfectly happy adopting if that were the best, least risky option. I just know that in my life, I need to be a mother.


nutshell88
9 months ago

Glad you’r dong fine chick 💕💕😉 my MS is still in something like a coma never causes any relapse for some reason kind of sneaky lol i hope it never backstabb me all of the sudden. Specialy that summer has begun here in saudi pure roasting like lol ♥️🙂


rachaellouise
9 months ago

@daybyday
– that’s sounds great food ! Two types of mushrooms you sound like me. I love mushrooms. I had shitake and 🌰 chestnut
Yeah things take me longer to but I just give myself a bit longer . Lol

I am 35 and I have no kids but would like them. Think we are in similar boat. My husband does want kids but age wise in similar thing as we get older and ms diagnosis last year .
Yes ms I think it corellates with loads of stress when the symptoms show up . My lifestyle and diet was just really bad . Everything pants etc . Arguing just bad !


nutshell88
8 months ago

Sorry for the late reply Rachell
Been busy with job and family. And of course spreading money on poor shop owners 💔😂 yes we are women but i just cant help it with shopping if not cloths make up if not make up supermarkets even 😂 I was coffee/tea addicts but since the summer has begun here in Saudi Arabia ice cream smoothies became my best friends 🌝 i rumbled again sorry
Regarding to my MS is silent its always been like that and thats super scary mysterious to me what the hell is it busy with 😂 im still expecting a relapse any second altho i havent got any the past 2 and half years
Still obsessed about should I get treated and ruin my fabilous mood or should i not 😕 thats all about it

Hope you’re keeping on well x


rachaellouise
8 months ago

@nutshell88

Hi there you,

Yeah I’m doing as well as can be expected lol .
I know what you mean about shopping always buying things …I’m getting some T shirts etc as it’s getting warmer now !

I obsesse what to do too ….
I’m not thinking of dmd for now as I think it’s kid root now and not just thinking lol action now,.
It was my birthday on Wednesday .

Did you have yours ?

Rachael


nutshell88
8 months ago

Yes I did 😍 4th of april

We are on the same line when it comes to DMT then for now lol I’m gonne see my neuro 7/2018 havent seen her in 2 yrs not sure what to say regarding to that ._.

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