Today started out "normal", attempting to get answers on real life challenges and difficulties. The whole ordeal is overwhelming and surreal. I'm reduced to begging for public assistance because I haven't been capable of work since Sept 26, 2016...i became officially flat broke about a month ago. Feeling useless. How can one work even part time if i spend M-F begging for aid? Most days i'm playing phone tag with multiple agencies at once, that's kinda like a white collar job, right!?...problem is the "pay" isn't comparative to the efforts. Oh yeah, i go to several doc appts a week...can't drive so need to beg for rides...i often need to cancel them due to no transportation. My day planner in one year went from being full with money making ventures and appts to chuck full of money spending ventures. I've truly lost the ability to care for myself where basic needs are considered. Suicidal ideations brought on by my anxious depression make this living in the day concept seem immpossible. I try to keep positive and trust it will all be OK. What will this OK look like i wonder?! Not used to being like this....truly see now how good people end up homeless/dead because the public safety nets out there are so untrusting....everything is hurry up and wait....cross all your I's and dot all your T's or your request gets simply denied...without "proof" of invisible symptoms, or money to go to all the referrals leaves loose ends so any help seems allusive. Cognition and short temper makes the beurocratic red tape stronger to get past. My cognition makes me feel as mature as a 4th grader more often than not...my education and experiences from days of being healthy, pushing the envelope when i wasn't feeling healthy, and now this certain MS diagnosis makes getting a useful place in the world i exist in seem impossible. Just had to vent some given i'm having one of those days where it seems i'm teetering on the edge and could fall right off. The whole thing makes me terribly sad and hopeless....anger and rage are running so rampant i don't even like myself anymore, if i were people dealing with me i wouldn't like me either. My presentation in all matters used to be spot on politically correct for the situation...those days are loss.
Sorry to hear about your hard situation. My wife was diagnosed around the same time as you, but it seems like you have been dealing with this a while longer then that. Do you know what type of MS you have? How is the Tecfidera going? My wife had some issues with it for a while, but at the moment we are doing ok with it. Did your dr perscribe things like Vitamin D as well? With such an unpredictable diease its hard to stay optimistic and we have our ups and downs for sure.
I am glad you found your way to some place you can at least vent your thoughts. You mention your cognition seems like a 4th grader but you write very well and you could be being a little hard on yourself.
If you have RRMS do you think it will go into remission and maybe get some improvement?
I was diagnosed with PPMS due to the number of legions i have in brain and spine. Tecfidera seems to be tolerated well with me...i'm in my 5th week of it...i do vit D3 and low dose aspirin as well...was on baclofen and amitripyline but ran out a couple weeks ago, and with no money or health insurance had to stop taking them.
My contrasted 2 1/2 hour MRI back on Dec 5th was done without proper hearing protection so my hearing was damaged according to a test i had in Jan, my ears ring constantly and i experience voices in my head on occasion...complicated because it was done at my neurologist's office and based on my living in rural Maine they are the only game in town so to speak. II was told that there are hearing aids i could get but with no insurance or money i cannot get them....$4-6K is the cost for them.
I had experienced jaw clinching that wrecked my teeth in Jan as well, a couple have broke right off. Last one just last weekend eating chips of all things!? Again, no money or insurance so it goes unaddressed....surely infection will set in sooner than later some weekend and require an ED visit where i will be prescribed antibiotics i can't afford and be told to see a dentist i can't afford.
I live alone currently with friends right next door who kinda get this ms thing because where i like is my buddy's gram's old place who died last year after 50 years of having ms...so they for the most part get what on the outside of ms looking in can look like...comforting, yet, i'm treated differently than when i was running around "living the dream" with untreated MS.
I hate the surprise pity parties that end up attending at the weirdest times it seems...escape alludes me more often than not because my fatigue can have qualities of insomnia as well.
I'm used to being the "helper"...not the one needing help!!! I find it humiliating, especially when i get that disappointed look when i have to decline certain events, needs of others....because of my new limitations.
Really can't envision getting from "here to there".
Thx for reaching out to me and my hopelessness rant.
Thanks for the extra details. We are all in the same boat more or less so listening to each other is something we can do. I am surprised with PPMS you were given Tecfidera. Reaching out the MS society definetly seems like a good first step. Are there other resources in your area you can reach out to for rides and things like that, ie churches or community centers? I read a blog from the wheelchairkamikaze.com who also has PPMS. His situation is super hard but it often gives me hope.
This is Steve with the National MS Society.
I'm so sorry to hear you are stuggling with so much! I wanted to encourage you to contact one of our MS Navigators at 1-800-344-4867. We would be happy to help you locate emotional support resources, financial assistance resources, transportation assistance, etc. We have numerous resources to help support you. I also wanted to provide you the following crisis hotline you can reach 24 hours a day should your anxiety/depression become overwhelming:
National Suicide Prevention Lifeline
Take care and know that there is support available to you,
All the best to you my friend! Somehow this will work out ok. I can't imagine living thru the winter in Maine. They would probably find me in a snow drift somewhere lol. Now baseball season is gearing up so even ppl like me have something to do all the way until deer season. peace out!
Hi Bubba! I am very new to this website, and I have such a hard time with MS that I could really relate to you. I took my symptoms suddenly 4 years ago, and could 9nly work at my horrible physical job a few days a week, until I could not do it anymore, then after having $400 / month for 2 years I had no work for over a year until I got a small disability pension (I am in Canada near Maine). I am worth $700/month now...I have PPMS too and take Tecfidera. My illness improved SLIGHTLY a year after starting Tecfidera. Now it has been slightly worse again lately. I wish I had the type of MS where you improve for months at a time - people assume that I do, and it's frustrating trying to keep explaining. I feel for you, and please know others are in the same boat. It is better for women with MS to have a husband because the husband's income helps, but then a woman is expected to care for her children (I have a mentally disadvantaged 11yr old) and do a lot with terrible physical limitations. Hope to see more posts from you.💜💜💜
Bubbadog66 I too am very sorry that you are experiencing so many troubles because of your MS and other health concerns. I have been living with MS and managing pretty much without insurance since 2012.
It is not easy to navigate the different assistance programs but it is worth it. Try to keep your head up and only do what you are able when you are able.
I have found that there are times I cannot continue manuevering through the processes and have to back up for a while. Then I am able to pick up with a better attitude like you mentioned in your post.
Much Love and Support,
Uninsured in SC
Hi Bubba, Thank you for your honest share. You have touched a truth in all of us. Change, especially those changes which we do not want to make are painful and difficult. Like you, when I was young, I was active, and doing for people, and I even had some money. Then, I was forced to remember, feeling good when I gave someone assistance. Then I learned how to allow people to assist me, and to be gracious about it, to watch my friends do for me, and see the warmth upon their faces. Yeah, I would rather get to do for them, but now it is my turn to let them do for me.
In the old days, pre ms, we all had the notion that money made wealth, and value in our lives. But that is just societies way of controlling us. You must work, you must make money, otherwise you dont count. And when you are young and healthy it is a great game to play.
Everything you have said, i have said and felt.
Then I thought about it. I too hate change i dont want to make. But when you are forced you either resist like ??? or make a new life. How do I make myself useful?? I stopped begging for money and changed it to applying for assistance, i need help, is this the right place for me to get some assistance. it is just another game. Have you called the ms society? to speak with someone? please do. They are our best resource for whatever, if there is anything out there they know about it. When you go to the dr ask them also. Is there a teaching medical school near you? you can get your teeth worked on by students, you teach them and they do for you.
And if you want to have a discussion about giving up, let me know, i did, and i failed, and it was the worst worst worst experience about the bs people throw out. I received the least kindness in my life, and i have been through the ringer. So I can share and rant about that too.
Sharing all the emotions are great, keep it up, we are a great ear, and sometimes I am make mistakes and offend, but my heart is in the right place and I do know much about climbing back to living. Let yourself feel it all, then let it go, and hug yourself, you are now in a new world, and there is a place here for you. maria
Thx Maria....i always appreciate reading your posts....i jumped right into this within a month of being diagnosed....I am a recovering alcoholic, God willing 20 years without a drink one day at a time in May. Given that is a cunning, baffling and powerful progressive mental illness on the mental, emotional and spiritual level i have a huge toolbox of CBT type coping skills...i am finding they parallel MS in a very complimentary way...so in my experienced "mature" mind i would tend to believe adding MS to my plate would be a walk in the park...NOT!! Guess i forgot about the newness 20 years ago when i made the physical change of giving up my friends booze and recreational drugs. So concerning the MS the physical stuff is way more complicated. Heck, alcoholism is much "easier", just don't physically pick up a drink for one day and act appropriately....lol. Hasn't been a graceful journey, and MS is like a twisted Stephen King nightmare new season type of show...."And acceptance is the answer to ALL my problems today. When i am disturbed, it is because i find some person, place, thing, or situation - some fact of my life - unacceptable to me, and i can find no serenity until i accept that person, place, thing, or situation as being exactly the way it is supposed to be at this moment. Nothing, absolutely nothing, happens in God's world by mistake." Tough pill to swallow then, even more challenging NOW.
I totally agree and often forget the concept of how selfish am i to fight God in his plan to make this circle of life a "WE" kinda thing....I LOVE THE JOY OF PAYING IT FORWARD SO TO SPEAK, so how "immature" of ME to steal that same kinda joy from others God puts in my path!!! My current situation is in reality a huge plate full of luxury problems in the big picture of things. Take my living situation for example, i live alone in a buddy's gram's old home who had MS for many years before she passed last March. I moved into here a month or so before my MS diagnosis so my reasons to move here were unrelated to that, but the place is fully ADA equipped...very cozy because much of the inside is still her and her husband's. I have two other close friends who live in the trailer next to me on the property, the compound as we call it.
I'm the oldest person living here and until lately could work hard play hard with the "kids"!!!!
So my buddy, my "landlord" who is 15 years younger than me told me that he and his soon to be wife know all about outside looking in at MS...couldn't imagine inside looking out....WOW, what a gift!!! I never met his Gram but know that her and i could've become best of friends and probably suitable roommates ... the humorous old girl was tough as nails right through to the end. As i sit here at "her" desk on my computer typing this i can feel her positive vibe presense....eventhough i am frustrated as well because i just got home at 4:45am from spending the night at my chaotic young wife's house, we're separated, another long, long story, to find my water frozen because like an idiot i forgot to plug in the heat tape so it wouldn't. That's my MS cognitive dysfunction in action, managed properties for 30 years and know better....duh!!! Will be a cold adventure involving my pals and a torpedo heater today...won't be warm until Tuesday again here in Maine across from the big lake...lol.
And yes i have contacted the MS Society and am working with them to get assistance for getting from here to there...they got me a short term case manager to help me navigate through it...been most helpful.
Wow...this was quite the cognitive exersice typing ALL this....struggle with it....everything takes at least twice as long these days...hey, good news is i finished it before i forgot to because something "shiny" came floating by in my hurry up and wait world where multitasking seems required and second nature...finding my new "normal" thing. Hope i made sense...thx
It is kinda odd that you are living in a home of someone who had ms. That must be a time and again feeling, like you are stepping into the past, today.What was her name? Do you talk to her?
We are the third people to live in this home and years ago we met the woman who, with her husband, built the house. They lived in the old homestead on the property in the 70s while they were building this place. That homestead was built in the 20s and had no electric or water. They put that in while they were living there. But, every once in a while I look out a window, or notice something impressive about the house, like they put a tree twig as a banister going to the basement. And i say, thank you Barbara. I especially say thank you because they put the house 1/8 of a mile off the road. It is so quiet here I think someone is driving down the driveway when they are on the road, glad we are not so close to the road. Hate the walk to the mailbox though. haha.
So, since you have her furnishings, it must be filled with memories that are seeping through to you. And she never had a dmd!
Hi Maria, Yes, yes and yes...lol. It's like having a guardian angel...her and i both have like-minded beliefs where that is concerned. Her name was Patty...i never had the pleasure of meeting her personally but hear all the humorous stories concerning her... some not so humorous at the time though. I'm blessed in that my core people know all about on the outside looking into MS...i usually don't give them enough credit for that....my stuff, my faulty thinking. TIME!!! I'm still an infant in all this...can be a hard pill to swallow at 51 yrs old....lol. It's a practice, not perfection kinda thing right!?
practice, practice, practice. A quiet mind and soft muscles. The more you fight or reject reality, the more it will choke you. It is like Stockholm syndrome, the more you learn to 'love' your captor, the more peactful your existence. The more you fight the truth, the more your muscles tense, the nerves get aggrivated and the mind shorts all the wires.
I expect you can not relate to this, but, sometimes I sorta force myself to go into the sewing room to begin a project I have planned. I begin to get ready, choose the fabric, cut to size, choose the color thread, thread the needle, then get the matching thread bobbin and put it in place. But when I begin to sew the machine stops and on the screen there is a message that there is something wrong with the bobbin, at least four times I try , I take out the bobbin then slip it in, and again and again i get the same message. So I turn off the machine, put the cover back on and walk out of the room, I finally admit, it is not a day for sewing. So I spent a lot of time trying to do something I really wasnt in the mood or mindset or ready to do, instead of choosing something I wanted to do, like sit and read a book, or play a game, or call a friend, or watch tv. And that is something, with practice, you learn about yourself, and sometimes, resist and fight back, because it is our nature, like the alligator offering the frog on his back to cross the pond, promising not to eat him, but it is his nature.
Very soon, for me, it will be 70 years old, so I have had much practice, and I still do what I want, instead of what i am able. But the difference between me and you, is you blame yourself for an error, and i have learned, it is human nature. Sometimes, humans do dumb things and sometimes we forget how to do things but we do it anyway. I have been making lasagna all my life, last time though, I forgot to put some sauce at the bottom of the pan before I put in the past, so the pasta stuck to the pan, oh well, we ate it anyway. All it is, is the mind losing the path to the needed information. The real problem is, we need to be cautious and careful we do not harm our self. For example, my dad climbed a ladder to trim a branch and somehow he kicked the ladder away, so he was hanging like a monkey till he gave up and fell to the ground. Or my mom carried the laundry down to the basement and fell down the stairs, instead of throwing the laundry down the stairs and walking safely down the stairs. The other day I got up on the ladder to move a chime, on my way down I thought i was on the last step, and came crashing down on omy back. Lesson learned, no more getting on a ladder when no one is around to check what the heck i am doing. So now, I am at the stage, where I need to be especially careful with whatever I do, because i am losing touch with reality. No big deal, as long as i remember that I am becoming dangereous. But of course I shall forget. Because it is our nature, it is not unique to me, i am just like everybody else, but i have learned not to take it personally. It is a better place to be. Humans sometimes do dumb things, it is in our nature.
so very true...i forget that ALL the time. if someone else were as hard on me as i am on me i wouldn't like that person much either, retraining that dysfunctional vain Irish catholic keep it in the family and make it all look "perfect" at ALL cost with MS to contend with now is sure challenging... heck, it was challenging since birth...lol...i was adopted into the mess too, fresh outta a Catholic Charities baby factory orphanage in Boston, MA shortly after birth in the 60's....lol, a whole different life nuturing chapter.
I'm just hoping i remain safe enough to spread humor, joy, and amusement to the lives of those around me for awhile...lots of people claim the guy upstairs is far from done with me yet. i know i will get there and i'm far from totally bankrupt from capability of contributing to life yet... i have to resign to the fact that i'm a young at heart experienced older man of wisdom who can be of service through wisdom and guidance to those folks i meet along the way in my small world life journey, if that makes sense!?
I really appreciate reading your posts here because it truly gives me hope....a definite wise choice of expended energy...i can't learn a darn thing if i do all the talking....for me it is like being an infant at 51 yrs young....lol...sometimes too smart for my own good because i can forget what my own good is because i'm too busy thinking about how smart i am...how mature i am and refuse to believe that i am delusional at times due to MS and normal aging...i think that says the "profound" analogy i conjured up in my early evening after a busy day mind...thank God today is almost over and has been by far not one of my worse days i've experienced ever....lol
Okay bubba, the only suggestion I have is to do it for yourself, not for others. Make yourself laugh, make yourself happy, do things for you, not 'them'. I have found that i can do nothing for anyone, but myself. Like here and now, I read your post, and I see myself, I hear myself through your words. I didnt like alcohol, but I enjoyed street drugs and either ran out of money or connections, so I too have been sober a long time. But I dont think of it that way, I just see myself as moving on to something else, new, like a turn in the road.But I digress.
As far as I know, I do nothing for anyone but myself, to make myself feel good, to make myself laugh, I am my own audience. Because when I have done things for others, it has always backfired in my face.
Have you ever met a jolly person? Someone who is enjoying whatever is going on? You look at that person and feel good, the look on their face brings joy into your heart. You can not make someone happy, you can only make yourself happy. I know that sounds weird, but it is true. Maybe it is like a yawn, you catch it from someone else, but you cant give it to them.
The heck with the rest of the world, bring joy to yourself, bring happiness into your life, that is hard enough. And, if. you are happy, others will see your happiness as something they want to, you become a sample for them to follow.
I watch a lot of Groucho Marx and Johnny Carson, and what I especially notice is their minds thinking, looking for something to amuse themselves. They look to make themselves laugh, and when they succeed, others laugh with them.
My father, always said, take care of yourself! I have taken that to mean, keep yourself safe, and to do that, you must always watch yourself, twenty four hours a day, seven days a week. Always put yourself first, because you can not function if you are not safe. Always protect yourself, and as you know, it does not always keep you safe, sometimes some s#$t gets into your life.
About alcohol, just my opinion, there is no make wrong attached, it is what was done because it was necessary at the time. Circumstances including mental ability, were not able to surpass the obstacles, like it was not your time, yet. Like being dormant.
So, if you want to beat up on yourself, go ahead, giggle. For me, i would rather spend my time complimenting myself, you got to 51, you musta been doiing something right! And every day that you get out of bed is a big deal, and if you dont get out of bed, there is a good reason for staying under the covers. You just dont know what it is. (One day, my cousin was late for work, she worked in on of the towers, and that was a day when two of her cousins were on time for work, they also worked in the towers.)
Learning to trust your heart instead of your brain is a good lesson to practice, practice, practice.
You're a "rockstar" Maria....i'm sooo GRATEFUL you've reached out to me. From the sounds of your time-tested experience you so freely share you could be Patty who lived in my current home before me. Like you, i find great joy and gain even more knowledge about myself interacting in a forum such as this as i trudge the Road of Happy Destiny...i genuinely appreciate you. It's a win-win thing for me as well. I get comfort in knowing i'm not alone in this "new" journey, chapter of my life. That there is quality of life inside of my MS looking out at and facing the world i live in. I don't know what i don't know and that's OK today. Faith without works is dead...like all else i forget even the things i know if i don't "work" at it...lol....practice, practice, practice....LOVE IT!!
Bubba, YOU are a rockstar, you just dont know it yet.