Pretty morbid , i know , for my first post. I guess I never realized such a group existed, yet, i have a profile. Sometime ago im sure i created a profile but if you ask me today if I remember, my answer would be i must have if it says so. It was so easy to make light and be optimistic about how my life will be living with MS. Afterall, friends and family , and even my neurologist made light of how lining with MS isn't the end of the world. There are treatments, they said. Eat healthy and exercise regularly and you'll be fine, they said. You just need to stop worrying and get out more, they said. Not all MS'rs become disabled, they said. Its all somatic , there's nothing wrong you look good. Pain? None of my MS patients have pain like you do, we can't blame everything on MS, they said! These comments and "positive" feedback were after over months then years of feeling my body and brain getting progressively worse. Believe me, there was a lot more over the years , but then it all stopped. Why? Because after awhile, those same people who gave you those words of advice are no longer in your life. I guess after awhile eventually they got tired of declining invites , no shows , or because their words of advice were not practiced hard enough by me and that's why I developed other auto-immune disorders along the way, diagnosed with MDD because , Afterall, its all in my head . Because I'm psychologically chronic depressed is why I'm feeling the way I do. Developing a blood disorder out of nowhere requiring routine transfusions , but your labs are good. Spinal stenosis C2-3 , T 4-5,L 2 degenerative spine disease before 40 apparently is normal to have 75 to 85 yr old spine , joint inflammation to upper and lower limbs isn't serious enough to treat. The migraines, the now 24/7 joint and muscle pain in both arms/hands/ fingers /feet /ankle isn't serious enough to be managed before it hit to this level of wanting it all to just end right now ! Poof! Gone forever. Liver disease? What? Atleast I could have enjoyed being an alcoholic or drug user and have reason why my liver goes through acute attacks . Fast fwd, who said i didn't have to worry about my job? As i sit here lonely and confused and hopless because my employer placed me on LTD , stripped away my Healthcare coverage for me and my special needs daughter, life insurance replaced it with instability and security risks for my health , just abruptly stopped ALL treatment because my neurologist wouldn't send order to infusion clinic for one last time because she felt i was unhappy with her services- she was right! But to deny me my ocrevus nfusion because of hurt feelings I'd uncalled for! Since then my old symptoms decided to take permanent residency and invite new symptoms to play with . I managed to push my pride aside and apply for government assistance. I'm a single mom and my daughter dad passed laway last month from cancer. I did my very best to provide all paperwork and do everything asked but this pain and fatigue is wiping me out more each day. I do know i need help because I loss my ability to focus,multi task, memorizing ,organizing , just THINK. So every thing is done longer and slower or not done at all! I'm grateful for food benefits but I need medical insurance in which i was denied for reasons i have no clue why because I do not understand what action i did or didn't do and how to make it right and using patience to get information because all i can focus on is this pain. All day .All night. All morning .All evening pain pain I just no longer can have it in me . It takes me hours , all day and sometimes days to type up one email because of how much discomfort I feel. This has to be my lowest of low. I can't express myself in speech or words many times like i used to. I was a nurse case manager for a fortune 500 nation wide Healthcare industry. Look at myself now and look to the both sides of me . Look at my phone for any calls from friends or family - nothing! But that reality has been accepted over a year ago. Although i did experience a light at the end of tunnel a couple weeks ago. Man, it felt so good to finally have hope! I went to a well known respected neurologist in SA after 3 months waiting. I got to see her right before my Healthcare coverage ended. Wow never have I felt this level of care . BUT when my insurance ended and I asked if she would accept medicaid so we can finish and i can finally resume treatment . I started receiving notifications that all my future appointments were canceled. Then her office staff calls to tell me the good news that Dr. Gazda does not accept medicaid. That was that. So I guess that's why I ask myself how long or is it known how long could someone live , when experiencing physical pain scales of 5 to 9 daily , emotional pain, mental and psychological pain. How long? I hope i will continue to stay connected with this group to keep me focused . I'll do my best. Thank you for reading my trauma dump if you made it this far. I don't know you but from one msr to another, a human being to another - i love you stay strong. 🧡
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Mommamoon
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Hi! I'm sorry to hear that you're going through so much. Loss of a support system and so much pain to deal with and then on top of that having to deal with losing your health insurance and income. You actually sound a lot more braver and stronger than you think you are. It takes a strong soul to keep persevering through all of that. I'd start your process to get your social security and Medicare. Sounds like with what you've been dealing with for several years you should have enough documentation from the different doctors to pull together a good case. I wish you the best of luck finding a new doctor and hopefully getting some relief soon from your pain.
Now's a terrible time to try for Medicaid, because they're cancelling so many people post-Covid, but try again. It's possible that you hadn't been unemployed long enough, and our wonderful government doesn't look at your current or future income but what you made over the last 3-6 months.
I hate to say this, but if you have money in the bank -- more than a couple hundred dollars -- remove it. Hide it somewhere that doesn't have a paper trail, don't claim it, and if anyone asks, just say you spent it all.
If your daughter's not on SSI, see if she's eligible. Apply for SSDI for yourself. You don't want to delay that, because you're required to work so many years shortly before applying. If it's 10 years down the road, they'll toss your paperwork.
Check for any local agencies that help with whatever. Lutheran Services offers income-based counseling that's not religious. Catholic Charities can help sometimes with utilities. The Salvation Army and other church groups could help with clothing, food, or furniture. Your local Social Security office should be able to schedule an in-person appointment for you to discuss your options and help with the paperwork. Welfare should, too, but that's sometimes like pulling teeth. See if your town/county offers cheap transportation for the disabled.
I agree with Humbrd that you're a lot stronger than you think you are. Just look at what you've handled so far. Your situation really sucks, but you can do this.
Prayers for your courage & strength.Can your local ms society help you find neuro that takes nedicaid.you sound like smart lady if nurse Case manager. You just need hope & it is there,
Mommamoon, it sounds like you have a lot going on and plenty of pain. Losing your health insurance - that's major. Prayers for you going up! On top of everything, you are a single parent. If you need a support system, this group is here for you!
I hate to sound like a Bible thumper, but Jesus is the answer. Dig deeep and find your faith. God is so much bigger than anything we deal with. Meantime, I will be praying for you! Isaiah 41:10 says, "Don't be afraid, for I am with you, Mommamoon. Don't be dismayed, for I am your God. I will strengthen you, I will help you, I will hold you up with my victorious right hand."
what a nightmare experience,i do think many of us go through similar life experiences if you have had ms for any length of time.i find it hard to believe that dr's medical professional, experts can honestly say we have cognitive problems, think about all we have had to manuver with this disease, everything from finding a dr worth a flip, to how can i afford my medication? am I going to be able to walk, drive take a shower, everyday questions. Alas we have to hang on to each other,someone else that gets it.we are in your corner and we will fill you with answers when we get them
Do you ever go back and read what you wrote and think who is that! No way that was me lol TBH i don't remember posting this at all. I do know i was in a really dark place then , not so much now because flare finally went away after 6 months and i did end up getting medicaid and starting all over to get my health back on track. A doctor actually prescribed me a steroid pack and I can't believe how much relief I have gotten from these steroids so far. On the box it actually says for vMS FLARE UPS!!My previous neurologist never ever prescribed me steroids! It's amazing how much cooler my body feels too! Its hard to explain the heat that resonates through my skin internally to externally . Anyway it's great. Today i see a neurologist finally. I pray 🙏🏽 pray 🙏🏽 this one is decent . Since I've been without any treatment these past several months ive managed to discover new symptoms that i hope she takes seriously. But i have to admit something VERY ODD. I've been going back and forth with my previous employer ,i mean, they REALLY did me wrong in so many ways that there isn't enough time or energy to type it all up. BUT i will say that SUDDENLY my "Healthcare coverage never ended just my employment status! Hmm 😒 very suspicious because I have been emailing them on this matter and how it don't make sense to place someone on LTD while ssdi is processing but there's no Healthcare coverage for me to maintain compliance and produce medical documentation from medical treatment that is required in order to receive LTD. DOES NOT MAKE SENSE. They couldn't make sense that's why they don't respond, actually, the ltd cm did mention to me that "" you have to realize you are no longer an employee for Elevance and don't qualify for employee benefits, go to your community!" Whaaa , yup she said that. I can't make these things up. Only to discover so nonchalantly that I've always been covered! Thev stress , the insanity, the depression, the battle , the hopelessness and on and on ive been through and receiving no treatment all for them to say ive had active coverage 😭 I'm happy but I'm sooo bitter over this . I'm angry with them! Now i have to cxl medicaid but I'm scared they are going to mess with me again. This just isn't right at all. But I do appreciate all the positive feedback and inspiration from you all. There is no other place to go when i need others to "GET IT" and you all do and appreciate you all so much 🫶🏾✌🏽🧡
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I am here to learn how others cope with the everyday living of MS.
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