I’m new here! :) : Hey! I’m happy to be... - My MSAA Community

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I’m new here! :)

Marlennewilliamson profile image

Hey! I’m happy to be here! I’m from Mexico and I moved permanently here last year! I tough I was starting my happy life being married but honestly 2021 was the worst year of my life, I’m far from my family and friends, I have a degree but isn’t valid on the US my husband’s family don’t like me because they think I’m using his son to come to the US ( racism) I’m thinking lately about euthanasia as an option because I got diagnosed one year ago and don’t know why I don’t have a treatment or a health plan from my Drs. Im scared and feel alone. I don’t have a job since I don’t have proof of high school or equivalent so I accept any advice from you! Thanks

43 Replies

Hola Marlenne! I’m sorry to learn all you are dealing with. Especially the lack of caring from your husbands family when you are far away from your own. That hurts my heart for you.

There are resources available you just need to know where to look. Would you mind sharing the city you live in? It would help us help you with local resources. You can direct message me if you aren’t comfortable posting it here.

Start by looking at the support section on the National MS Society website. nationalmssociety.org/Resou...

They even have a section in Spanish if you’d like. nationalmssociety.org/Resou...

MSAA is another great organization with support available. This is the organization that supports this forum. mymsaa.org/msaa-help/helpli... Their support line has both English and Spanish speakers.

Your English seems great! I only provided the Spanish language info from personal experience with my ex-husband. He is bilingual but is still more comfortable in Spanish even after decades here in the U.S.

Thank you so much!! But this is why I’m here if I’m far from my own family I’ll make my own here 🤗 it’s super hard for us since MS isn’t always visible for others! I’m in Carson California and I’ll check the links thanks you so so much! 🥰

Since you are in Carson, you are part of the LA metropolitan area which has lots of resources for immigrants including help in getting a job. There are probably lots of programs available to help you. Just be careful because LA has lots of scams too.

Amazing!!! And thank you again I’ll check and be careful 🥰

Your story is so heartbreaking. Please lean on us and don't give up. Better days are ahead.

🥰 thank you so much!! Feels good to read you guys!! Thank you 🙏

I'm sorry you had to struggle through the past year without support! Always know we are here.

Welcome to our little family!

😊

🤩 thank you!!! I’m so happy today!!! Thank you!!!!! 🙏 I feel so lucky 🤗

welcome. first, i'm so sorry. i can't imagine how much more frightening my illness would be without my mum. on my really bad days, it's as if i regress. suddenly i'm 4 again and just want my mummy...

racism (and other forms of bigotry, including misogyny as we've just seen last week) runs rampant in the states. it's horrible you encounter this with people who are supposed to be your new family.

i'm not certain about your status, but i'm assuming you're a citizen via marriage. if that's the case and you are out of work, have you considered trying for disability? i haven't a clue how that would work, but it's something to consider. there are lawyers who will work with you. i bet if you contacted an immigration centre they would be able to answer your questions better than i can. meantime, if you're anywhere near a major city, look for an ms centre or perhaps a teaching hospital. often they'll have programmes for 'indigent' patients, or those without income. again, i'm not sure if your husband's income would affect that, but it's something to look into.

regarding euthanasia, in the back of my mind there's a level of disability where i will be done. i've known this for years. on really bad days, i even daydream about it... an end of pain, can you imagine? but i'm not ready yet. when the time comes, regardless of ridiculous and amoral laws in the states or back home, i'm out. i wouldn't do it now. you don't know about treatment options. i think back sometimes to when i'd take the prescriptions, pretend i'd take them to my doctors and not fill them. cliché, yes, but it was a difference of day and night when i actually started taking my tablets. i take medication for: spasticity, nerve pain, joint pain and an antidepressant. again, medications can work wonders.

if you think of it like your qualifications it may help. you have an illness, just like you wanted a degree. to get your degree you had to study, attend classes, & etc. to fight this illness you need tools. just as you needed teachers, you now need doctors. back then you needed textbooks, laptop/computer & etc, well now you need medication, possibly physiotherapy. i'd urge you not to give up until you have a team in place, symptom management (including depression, which let's face it, you have a chronic illness, depression will show up from time to time) and possibly a long term disease modifying therapy. i have personal goals that have nothing to do with being ill as well. perhaps you could get qualifications here.

while you're getting all this together (and don't forget online degrees if sitting in classrooms is daunting while you're ill), we are here. please share. hold on. you have many options.

🤗

Thank you!! I’m trying to figure a way to go to school! It’s just so different!! My husband works super hard and I don’t feel good asking him to help with everything! I have been in pain and Drs. Only have me gabapentine and honestly I stopped taking it! I felt like was something else like a kidney problem and Kaiser never have appointments available, either way they never run any physical examinations, only medication 😒 I started physical therapy but it’s $45/ session and I can’t afford that for now and It’s the only thing that seems to help me for real!

I’m not that bad for now but I’m scared, like my vision change over night and that’s scary I can’t sleep at night because is so hot and heat makes me feel tingling and also get super scary, I don’t know if I can get disability since I just got my permanent residency and haven’t work that’s also scary I feel like it’s to much for my husband to handle.

I even told my husband to divorce me so he can get a healthy wife and he was crying and brakes my heart he love’s me and I love him but I know that I’m only gonna get bad that’s why I thought about euthanasia as an option.

I tried working as a nanny but I guess don’t have to mention my illness since I applied with 3 families and they left me on seen and another one just told me no because if I get sick they can’t get time off from their Jobs.

Thank you for your words I really appreciate it!!! For ones I don’t feel alone!! I’ll try and continue sharing with you guys!! Thank you!!! 🥰

i'm glad you found us. this place allows all of us to share our experiences and find support. regarding your physio, someone on here posted a while back about exercises they found online, youtube maybe. you could try searching for exercise on the ms hub. it was maybe 2 months ago if that helps. 45 is a high copay, especially when you're out of work!

i think we all feel guilty about our loved ones. i try to hide how bad it is on the really horrible days, but my mum always knows. it hurts them because they love us and can't fix it and it hurts us to watch their pain. i do think we should let our loved ones be there for us. even if it's just listening or taking us to our appointments, that's something significant they can do for us and i think it helps them.

unfortunately, the only doctor who has really helped me is at the pain clinic. i have multiple issues and i lucked out finding an empathetic, intelligent doctor. it's possible you weren't taking an adequate dose of gabapentin. also, most of us on meds take more than one. i take a spasticity medication that made me loopy and ill for 2 weeks until my body got used to it. i hated those 2 weeks, but once they passed, i could tell how much the medication helped me. also, if you live in a state that allows it, marijuana helps a bunch of symptoms: spasticity, pain, nausea, etc.

depending on your type of ms, you may not become as disabled as you fear. with the newer dmt's a lot of people are going longer without relapses and they aren't as severe when they do have them. hopefully you can find a doctor/hospital that has an indigent programme so you can find a good neurologist.🤗

Yeah for sure I’ll try my best to find a way to feel better honestly I’m glad I came here!! I Feel so much better already I don’t feel alone anymore and thank you all for this!! 🥰

🤗

Welcome! Lots of great answers here, I just want to add you can take the GED and it's the equivalent to a high school diploma.

theclassroom.com/ged-immigr...

Thank you 🙏

Welcome!

There are lots of kind people here :)

Thank you 🙏!!!

Welcome Marlenne

😊 thank you 🙏

Welcome Marlenne, you came to the right place. Los Angeles has TWO MS Centers: Cedar Sinai and UCLA Wishing you well. Lots of resources available.

cedars-sinai.org/locations/...

Good to know!! Thank you 🙏

Welcome to our forum. If you are in Carson, you are close to MS clinics. Keck/USC Health has MS services and helpful neurologists. If UCLA is easier to reach, there are MS clinics there also. Check with the Southern California National MS Society; it offers courses, resources, and options for those of us with MS.

Welcome! My sister in law is from Puebla 😊 Glad you are here in the states where you can access better Healthcare. Have they put you on Disease Modifying Therapy (DMT) or just the Gabapentin? I know Kaiser can be tough to navigate. I hope they sent you to a neurologist.You don't have to disclose you have MS to potential employers. If you feel your current disability would make it unsafe to care for children you can look for another type of job.

LA has a lot of communities with large numbers of Mexican-Americans. If you would feel more comfortable making friends with people from your same heritage they are there! However, it is a big melting pot with lots of nationalities and lots of people to make friends who have similar interests as you.

Don't let the bad apples in your husband's family spoil it for you. Most people in LA have open arms for all, regardless of race, ethnicity, etc.

Keep us posted on how you are doing!

This is feels like a warm hug and thank you for it!!! They only gave me Gabapentine and it’s so hard to reach my Drs last time I sent a email to my neurologist she told me I need to see my primary Dr which is never available and the only time I had an appointment with her she didn’t do anything just send me home with a bunch of papers with info that I easily can get online🥹 we are looking for options with different providers so hopefully I found better help! And I don’t mind have friends of any nationality I had meet nice people in LA just life is so different here I’m just feel like I’m floating in the ocean by myself 🫤 and thank god my in laws moved to South Carolina so hopefully I feel less stress from them 🤞🏻

Were you diagnosed with MS at Kaiser or in Mexico? The Kaiser neurologist should be in charge of prescribing your DMT and any other MS meds, not the PCP. Maybe ask your PCP office if there is a neurologist that specializes in MS in the Kaiser system. Just be aware you may have to drive far for the appointment but at least they are not too often. I grew up in Orange County and Kaiser didn't used to have radiation oncology in Orange County, patients had to drive to Kaiser Sunset in LA Monday to Friday for weeks. They now have one location in Orange County. That is why I wouldn't be surprised if you have to drive a distance to see a MS specialist. I am a radiation oncology nurse which is how I know that piece about Kaiser.

If your husband has the option of changing health plans during open enrollment you might want to look at what else is offered.

I got diagnosed Kaiser but my neurologist said I can’t get treatment because I’m not having symptoms, which I told her after my last visit on January I have pain and she only prescribed Gabapentine and it didn’t work so she told me to stop it to see if something changes, then got other symptoms back and she told me start gabapentine and vitamin D3 and go visit primary Dr. And I don’t mind drive far as long I get more answers or treatment that really helps 🥹 thank you for your help 🥰 I’ll ask a referral to a MS specialist see what happens 😊

Definitely ask for the specialist, sounds like that neuro isn't keeping up on current recommendations on treatment. Glad she has you on Vitamin D. My other advice is to exercise to you best ability and eat a healthy diet such as the Mediterranean diet or a keto diet. There are some MS diets out there but they are pretty restrictive and haven't been proven to make any more of a difference than a normal healthy diet with whole grains, fruits and vegetables as your carbohydrate. Grass fed beef is supposed to be less inflammatory but can be pricey, especially in LA. I get mine through Butcher Box. I have a friend with a different autoimmune disease and her doctor told her to get her meat from Butcher Box too.MSAA.org has lots of information to help you understand diagnosis and treatment.

My prayers are with you. May the Resources start flowing soon🙏🏾

Amen! Thank you so much!!!

H ola my Sister, Welcome and we are familia here! Good information is always shared almongst us; in your area their may be a "Hub" of Women Organizations. We have a Women's Law Center in PA Health, housing everything. We could help direct you towards resources, if we knew a little more, if you felt comfortable. So sorry you are going through this.

Be Encouraged

Blessings

NeeC

Hi and welcome! I’m sorry you’re dealing with all this, it must be very hard for you. I work for Kaiser (nurse) and have kaiser medical insurance. They can be difficult at times, but I know there are 2 MS specialists in the Southern California area. LA county and San Bernardino county. Both doctors are very good and will start you on an effective dmt quickly if that’s what you want. You should have been referred to the specialist upon your diagnosis. You need to call and push for this if it is not offered to you. Another little tip, if you need an appointment, make sure you get the kaiser app. There’s an option for “get care now” where you can literally get a phone or video appointment within minutes. Hope this helps ❤️😊

I do have the app and just talked with a nurse and she told me there are no Drs available in my area and send me to the urgent care but I don’t know if I’m gonna have to pay more at urgent care than normal visits but I’ll try for sure !! Thank you so much!!! 🥰

Welcome to the group. Sorry to hear about your husband's family being jerks to you.

There are programs that can help you convert your current degree to a US equivalent. You just need to talk to a college or university counselor about what you need to do for the conversion. He/she can then also help you find scholarships to help with that conversion. Another place to look is scholarships.com. There are several scholarships available to apply for just because you are studying in certain fields, or because you are a woman, or because you are a certain ethnicity, many have financial needs limits (in other words your annual income can't be above whatever limit they set) but some are merit based only.

Everyone already gave great advice for your MS needs.

Oh wow I didn’t know!! Probably will be easier to do this way!! I tried it before but they asked to have a employer letter or school so I don’t have none of that but thanks I’ll check one of the schools close to my area 😍

Hola Marlenne! Welcome to the MS family. I agree with all the advice presented so far. I would sign up for information from National MS Society, MSAA, Msfocus.org.

As far as physical therapy is involved please check out MSgym which is online. Most of the site is free and I have found some of the best exercises to combat just about any MS symptom you have such as vision, balance, spasticity, foot drop, etc.

Please do not get so discouraged as to think of euthanasia. You are a beautiful person with so much to offer. Not to mention way too young. Many good things in life to experience even withs MS. I know the MS society has some information about employment. I don't know what your degree is in but there just might be something that you can do even if it's part-time.

Please know that you are amid people who share so many of the same feelings, fears, frustrations,...so many F words!

Take care and welcome to the USA

🥰 thanks for this!!! Seriously thank you so much!!

welcome to our great bunch of people that will make you feel better and make you laugh ...don't let life get you down so much ...it is wonderful ,sure maybe not always what we would like but you can change that or go along with it ...talk to your new husband and ask him if he feels the same way about using him to come to the US ....don't let his family do that to both of you for this is your marriage not theirs ....so sorry i know when the mom is jealous of her son getting married and wanting to do for his wife and not mommy all the time if this is the problem ...so sorry ...maybe trying to get help for married couples ....but the stress of it can make living with MS worse ...take care of yourself ...never knew that the US didn't go with any schooling in our states ...wow ..can you take a test here to prove that you have went to school ...this is the pits...wow...hang in there life is too precious to bail on it....love and happiness....

Yes I need to go to school because is a test with a bunch of math and algebra that of course I’m not used to anymore 😂 I did that test in Mexico to get into high school and university and I graduated 6 years ago 😖 so you are absolutely right I’m in the right place and with the right people!!! I feel so much better know! And I’ll fight for my career and to do what I love the most!! Thank you!!

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carolek572CommunityAmbassador

Welcome to this forum, Marlennewilliamson ! Wonderful advice already given. Let me tell you about another wonderful resource available to you, mymsaa.org

You’re in my thoughts and prayers. Keep Smiling :-D

😇 thank you so so much!!

WELCOME! I may have sent this message to you twice. I'm still learning about this site.

Thank you 🙏 and I only got one but even if there were two I’m good with it!! I’m still learning too 😊

This is a great group. It is a great support. Definitely ask your Dr about dmt options. Prayers to you.

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