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Confirmed MS... I'm struggling & need support!
  1. #1
    Autumnhopes is offline Member
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    Default Confirmed MS... I'm struggling & need support!

    Hello all

    I started a new thread because no one is responding to my old thread & it's getting really discouraging

    Please please, I need support & help! I have opioids & I already fell down. I'm in such pain & have morphine ER my doctors gave me a couple weeks ago. I didn't take any until they confirmed the Multiple Sclerosis diagnosis today & my muscles are jerking, my body is in such pain, my legs are buckling... I feel depressed & anxious which I learned along with my memory loss is another symptoms.

    My husband is screaming at me. He doesn't care at all how sick I am. He's tired of taking care of me. He threatened to hit me in the face & told me the reason I have MS is bc I'm so stupid & I deserve it.

    I just don't know how to keep going sometimes... I popped a morphine & laid down. I don't know what else to do to cope. I feel so overwhelmed, everything I learned & practiced is gone. I feel like I'm starting over.
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  2. #2
    Leah987 is offline Advanced Member
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    Oh, Autumngirl!.....I don't know what to say. I'm so sorry you are having to go thru all this! Life just is not fair, is it? I really don't know what to say, other than you are a wonderful person, and don't deserve all this. I have no advice except keep a baseball bat beside the couch, and when Hubby talks trash to you, jus' lettim haveit right upside the head. Or maybe not.....you'd end up in prison. Want me to do it?...I'm older. I won't have to stay in prison as long as you....... Geeze, ain't we a mess..... ((hugs)) Sending up a prayer, Autumn!
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  3. #3
    Leah987 is offline Advanced Member
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    PSSSSSSSST! Autumn!.....just had an idea! You have good life insurance on Hubby?:confused
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  4. #4
    Autumnhopes is offline Member
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    Thank you Leah for your love, hugs & support!

    You seem to always know what to say... not preaching at me or comparing me to others with MS.. but just loving me. That’s what I need now in my low period. You are amazing.

    I have been studying a lot about MS, & need to learn about treatments. I know I need a lot of help.. it’s hard when the opioids are there. I’m dealing w so much pain. I need to discuss w my doc what’s the best course.

    Thanks again Leah!!

  5. #5
    Autumnhopes is offline Member
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    Hi all

    Dealing with a lot here... fortunately I've been reaching out & my forever friends have been reaching back. I'm determined not to stay in my depression though it's rough to pull out but all the understanding friends make it so much easier to pull myself up.

    I could use some inspiration & hope & compassion... all the things that make great company & friends.
    I'm trying to fight the opioid use. I can't go back there.
    Any thoughts??

  6. #6
    Lvg nghtmare is offline Platinum Member
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    Hello Autumn....
    I'm sorry you are having to go threw all this.
    Inspiration Hope compassion Empathy.... This is why face to face support for us Addicts is so crucial. We cannot do this alone.. For me Autumn for this addict as wonderful and life saving this forum was for me I had to get face to face support...
    The pain finally was great enough if "I" kept repeating the same thing over and over again nothing was going to change until eventually" I" would end up dead from my disease... Insanity eh.... Believe me Autumn I can so identify with all your going threw. Nothing changes if nothing changes. I wanted to change I had to surrender to my disease. I am an addict. I am powerless.

    ~one is too many thousand is never enough ~
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  7. #7
    Leah987 is offline Advanced Member
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    How are you this morning, Autumn?
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  8. #8
    Beefaroni7272 is offline Advanced Member
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    Hey Autumn. I'm sorry about your diagnosis. I'd agree with everything that lvg said. Face to face support is crucial. You can do this. You're stronger than you know. Keep us updated. I know you will.

    Hope you have a great Sunday
    Beef
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  9. #9
    Autumnhopes is offline Member
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    Hi my friends!
    Thanks Lving, Leah & Beef! It means so much to hear from u all!!

    My positive attitude and myself are coming back and that’s a great feeling I was in a slump last week just feeling so negative about the diagnosis but now I’m beginning to see the light at the end of the tunnel....
    I definitely agree about face-to-face support being so important I’ve already been in contact with fellow MS sufferers & it’s great to have ppl that understand to such a degree.
    But I really appreciate all of your friends to taking your time out to show your support even if you don’t understand a lot about MS but just saying hello and that you’re thinking of me that means so so much to me so thank you I really appreciate it....it helps keep my spirits up!!!
    I’ll keep posting... I see one doctor on Tues & we’ll see what happens..

    I have one controversial question... I’ve heard a lot of good things about medical marijuana for MS.. the articles & personal experiences have been positive..
    Any thoughts here? I definitely need pain control & help w nausea etc.. muscle spasms. The marijuana seems like a good medicine. It’s helped a lot of ppl.

  10. #10
    Autumnhopes is offline Member
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    Hi friends!!

    I'm getting a lot of help from family & friends which is great.. the emotional support is extremely necessary as you all know! I'm glad to hear from those who have posted.. it really helps to hear a hello .

    So... I saw my pain management doctors & they can't prescribe the medical marijuana but are on board for it. A lot of MS & even migraine suffers have gotten relief... they gave me a couple of local docs that can see me to prescribe a card so I can get the cannabis legally from companies set up for that in NY...

    (I know it might be a hot topic... but are there any thoughts?)

    I'm trying to keep positive & today I got out w friends & saw a movie, had lunch... it was awesome to feel normal.. lol
    Thanks for thoughts & prayers.. believe me, every hello on here means so much to me! It really lifts my spirits to think ppl read my post & care enough to respond.

  11. #11
    Leah987 is offline Advanced Member
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    Hello,Autumn....I see the coffee's ready, so I'll just help myself..... I know nothing about MS either....so I don't know how much help I can be. I know that the two of us just busted our heinies and went thru heck and high water to get off pain meds....But, you have received a diagnosis that may or may not change EVERYTHING. I mean, it will change your whole life, I'm sure. But, girl, as much as you've been fighting ...the meds, the pain, the illnesses, and as well as you've been doing, you will kick MS's butttt, too! You are one tough cookie, and with or without your hubby's support, you can do this. I KNOW you can! Now....Let's go for a dip in your olympic sized pool. I brought the monokini!
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  12. #12
    TheCib is offline Member
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    Hello
    I agree with the medical pot. Try it and see what happens. It can work wonders for pain and other problems you may have. I wish you well on your journey.
    Just for today !
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  13. #13
    Autumnhopes is offline Member
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    Quote Originally Posted by TheCib View Post
    Hello
    I agree with the medical pot. Try it and see what happens. It can work wonders for pain and other problems you may have. I wish you well on your journey.
    Just for today !

    Thank you Cib!!
    I appreciate your response & am eager to try it since my disease & symptoms are so bad. . I've heard so many positive things about marijuana & am reaching out to a doctor to see about their prescribing... see how it works.

  14. #14
    ChiefChe is offline Senior Member
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    Default Come Back Kid

    Hola Luvie,

    Sport it’s taken me so long to visit. Took me a hot minute to tear down my camp & relocate to your new digs. You would think with all this moving around I would be a pro at it, but as always, a work in progress.

    I’ve been thinkin about you steady & also reading up on MS b/vim not all that familiar with it. My thoughts, prayers, & energy will be focused on remission for you Sweets.

    After all that you have been thru I know this one came out of left field. Our addict selves have spent so long exaggerating our pain levels & then boom real life. Give yourselves time to digest this all & then Face it head on & let it know who’s Boss.

    I know you mentioned you have an interest in special diet stuff (obvi I don’t know the right word for it b/c diet is not commonly used in my vocabulary). Throw yourself into reaching all about that. I hear plant based diets are where it’s at. I know you know this but like any mom I just have to say it.

    I also know you’ve dibbled & dabbled with Western Medicine so I know your on top of that 2. Of course you know I have to mention meditation b/c I know stress is a big factor & welp we’re addicts so stress is the biggest factor.

    I was watching a show last night that gave me Hope. The show is called Alone, heard of it? It’s kind of like that Naked & Afraid show except you get to keep your clothes but you’re all by yourself surviving. I binge watched it during detox & it brought me comfort being all Alone in a sucky situation. Anyways, one of the chics on there has MS & she’s doing the dang thang. It showed me that if I could think myself sick then I can most certainly think myself well.

    You are strong willed & I know once the dust settles you will emerge an MS advocate. We all have a purpos....am I right?? Just a thought.

    As far as the medical MJ- you know I’m a big advocate. If you didn’t know, well know you do. The oils are best & will alleviate the pain, stress, & what have you all in one. Definitely research & find a Dr. That’s on board with it.

    I’m so proud of where you are in your journey. Don’t view this as a set back. This is the Universe setting u up for a come back!

    Just Keep Swimming,

    ❤️
    CC
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    Autumnhopes is offline Member
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    Awwww CC you are the best!!

    Love you!

    Thank you for all your thoughts I always appreciate hearing from you and you always have such wonderful special things to share it always gives my spirit such an uplift!!
    Glad to hear u approve of MJ... its controversial so I'm happy some ppl like u are open minded.
    I'm gonna check out that show "alone" too I'm glad you mentioned that.... that sounds pretty cool I love the show naked and afraid so I'm sure I'm gonna love "alone"....that sounds totally like something I'm into...

    So.... how are things going with you? how are the kids?? I think about you a lot and the family I know it's been a lot of adjustments a lot of ups and downs so I hope things are going OK? and you're getting settled?? please keep us up-to-date and let me know how you're doing and what you're up to?

  16. #16
    Leah987 is offline Advanced Member
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    Hi, Autumn! How's it going today? ((hugs)) <<<just in case you need one.
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  17. #17
    Autumnhopes is offline Member
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    Default A common misconception about multiple sclerosis

    I’m going to give you a couple of examples to illustrate what this title actually means and how important it is for people to understand it accurately and not just be like oh yeah yeah that’s true yeah I know what you mean no to really get it so here’s a couple of examples so I’m going to start with girl A let’s call her Annie, She has MS & she was diagnosed when she was 23 years old she’s 37 now and when she was 23 she had blurry vision and she felt slightly dizzy at times and she was so worried she said she’s the type of person that completely freaked out that she has to get it checked out by a doctor immediately to find out what’s going on even the simplest little thing she must go to a doctor. Long story short it turned out she had MS... well for a while she was a mass she was so upset she didn’t know what to do with herself but in time she calm down she was able to relax and she realized that she felt OK she didn’t feel any differently even though she had quit her job and she had withdrawn a lot from her life she didn’t really feel that sick in fact for the many many years of her disease she’s only had two symptoms blurry vision at times and occasional bouts of dizziness that’s all those are the only symptoms she’s ever had associated with MS....

    Now for a young man B, we’ll call him Ben. Ben was diagnosed when he was 33 years old he knew something was wrong because he never felt quite right for several years the fatigue was really strong it was hard for him to get out of bed sometimes the leg pains all these different you know symptoms that he had but he didn’t know what it was and yet when they asked him “do you have any visual disturbances are you losing vision in your eyes do you have dizziness you know things like that” while he would reply “I do get some dizziness at times but no I never lose vision in my eyes and I don’t have any visual disturbances” so because of that the doctors just wrote them off they said oh there’s no way he has MS besides it’s mostly women that have that mass not man so please there’s no way that he is a candidate he was basically ignored by doctors and he went to doctor after doctor after ..... he spent 10 years in agony searching for an answer in terrible pain people believing that he was just making it up and I know exactly what that’s like because people have believe that love me too and have gotten nowhere just Dr. to Dr. nothing but pills and bills then he finally got to a neurologist that was able to look past a lot of things and finally get some MRIs done and a spinal tap and finally give him the diagnoses that he needed
    Ben is 36 years old & his prognosis is tough he’s at a point now where he can no longer work and is seeking disability he tries to exercise as much as he can and he eats very healthy diet it’s called forks over knives it’s technically a vegan type diet but it’s supposed to be very nutritional for those who have certain diseases and he swears by it he says that he feels it really has helped him so he’s doing everything that he can to help himself

    Why am I talking about the stories Annie and Ben because I want people to realize that just because someone says they have and that doesn’t mean that they are super super sick and it also doesn’t mean that they feel great every body with MS it’s a completely individualized disease everyone feels different so you can’t judge people and you can’t tell them well I know someone with a mass and they’re doing great so you’ll be fine too it’s not like that it just doesn’t work like that!!!!


    Autumn’s story: ever since a teenager I was in pain I suffered from migraines from leg pain from extreme fatigue from visual disturbances you name it I had it dizziness & vertigo (both very different veritigo is H*ll) but I just went from doctor to doctor they didn’t know what to do with it in my 20s I started developing facial twitching muscle twitching I started finding myself with a muscle weakness sometimes my knees would start a bottle and it would be hard for me to be able to keep myself up right or I would just tumble to the ground. The pain increased dramatically not just in my head or my migraines but in my neck my spine all up and down my spine that we get these electrical shocks of pain it was terrible and then this widespread pain through my body oh my goodness it was it was just horrible and nobody could address what it was and now here it is I’m 40 years old and finally someone is addressing what it is MS but the worst part is they said that I’ve had it for so many years that it’s done a lot of damage to my body
    I’ve had two nights of blindness loss of vision where I just completely lose my vision and I can’t see and I need to find out why that that’s happening I now cannot control my bladder so I have to wear diapers I am in constant spinal pain and it’s hard for me to walk so you know I mean in someways yeah it’s encouraging to see people with MS maybe being able to do certain things But at the same time it’s not, I feel like a failure a FAILURE
    I wanted all of you to hear about those with MS what they go through and how some leave lead almost normal lives and some it takes them hours to get out of bed and don’t think that they’re both the same because they’re not and I just wanted you guys to understand that and for me I’m heading closer to the one that it’s going to be hours to get out of bed and it’s breaking my heart

  18. #18
    Leah987 is offline Advanced Member
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    Aweeee, autumn.....((hugs))
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  19. #19
    ChiefChe is offline Senior Member
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    Hey Tootsie Pop,

    Just wanted to let you know not a day goes bubbly that I’m not thinking of you (Squeeze).

    As always I got a million words flying around in my head but can’t seem to get them lined up in the right order to let them out. I know you understand.

    For now, I just wanted to drop off a present for you....SQUEEE!!! It’s one of them tent thingys you put over you bed!!!! Forget camping outside, did that all winter & froze my Uranus off. I know you got air inside here & seein that you might be stuck in bed most days I would bring the party to you. That’s right Honey, it’s time to Flip the Script & find a New Normal!!!

    Not Leaving Anytime Soon,

    ❤️
    CC
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  20. #20
    Autumnhopes is offline Member
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    My story takes a turn

    Right now I'm in the hospital it's day let's see day 6 since I've been in the hospital and it's been pretty terrible I've been in so much pain I am using a walker to try to walk my left leg is so weak sometimes I'm almost dragging it along ... eyes are in so much pain it feels like I have forks stabbing them... The doctors are pretty sure that with the MS diagnosis that it's been attacking my spine my mobility and now my optic nerve which is why I'm losing vision and when I do have vision is blurry are very hard to see colors are muted and they want to put me on that are very high steroid treatment for a couple of days that would be pretty intense . I'm scared I'm really scared hurt I feel so out of control I can't control my body

    It reminds me of when I was a child and I had no control my mother wouldn't feed me even though she ate in front of me she neglected me it was like when I was being raped as a child and he laughed at me and the things he said to me and I had no control I feel exactly the same way and it's killing me and I don't know what to do I don't how to get the control back what do I do how do I get control in my mind I can't exactly control my body all the time but how do I get control inside my brain please everyone please help me please

  21. #21
    Ilovemtndogs7 is offline Advanced Member
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    Hi Autumn-I just signed on to the forum for first time in more than a year because I read your thread. I often read, but feel like I’m in a place (regular life) where I’m not that helpful at replying. My heart goes out to you. It sounds like you are so frightened and who wouldn’t be? I can’t even address the pain from the end of your post except to say, if I had been your Mom I would have fed you, loved you and protected you from the horror you experienced.

    I’ve read enough here to know that people on this forum do care about you. My knowledge of MS is basic, but I’ve known people with ALS and watched my mom die of a horrible cancer so I can comprehend your fear. Is anyone there with you? Is there a support system available through the hospital? Are they addressing your pain? That was one of my mom’s most difficult issues and absolute panic and fear.

    Please remember that people care about you. I’ll keepchecking in. Please don’t lose all hope..I used to be Miss Dogs here. Take care. Sheryl
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  22. #22
    Lvg nghtmare is offline Platinum Member
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    Quote Originally Posted by Autumnhopes View Post
    My story takes a turn

    Right now I'm in the hospital it's day let's see day 6 since I've been in the hospital and it's been pretty terrible I've been in so much pain I am using a walker to try to walk my left leg is so weak sometimes I'm almost dragging it along ... eyes are in so much pain it feels like I have forks stabbing them... The doctors are pretty sure that with the MS diagnosis that it's been attacking my spine my mobility and now my optic nerve which is why I'm losing vision and when I do have vision is blurry are very hard to see colors are muted and they want to put me on that are very high steroid treatment for a couple of days that would be pretty intense . I'm scared I'm really scared hurt I feel so out of control I can't control my body

    It reminds me of when I was a child and I had no control my mother wouldn't feed me even though she ate in front of me she neglected me it was like when I was being raped as a child and he laughed at me and the things he said to me and I had no control I feel exactly the same way and it's killing me and I don't know what to do I don't how to get the control back what do I do how do I get control in my mind I can't exactly control my body all the time but how do I get control inside my brain please everyone please help me please
    *Oh Autumn my heart is breaking for all you are going through. We all here care and love you my friend. I don't always post because I feel I have no good suggestions to give you because I have not gone threw all you are dealing with. I hope you can reach out for some counseling or therapy in the hospital reach out ask someone for help keep asking til you get it. We don't have to go threw all this alone. Keep posting here get it all out. I don't have any good suggestions for you but I'm here to listen and support you. You are not alone...
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  23. #23
    UncleLeo is offline Advanced Member
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    Autumn - look at you fighting with all you've got. You've been through so much and always show us all so much strength and courage to inspire us all. This time, no different.

    Forks stabbing your eyes - that's quite beautiful in an Uncle Leo kind of way. Have always struggled to describe the sharp sharp eye pain days. Obviously, few of us can relate to your physical pain and you have our full love and support.

    But prob most here can at least relate to emotional suffering and the feeling of failure...so we're here for you. And none of it is your fault Autumn. Who is anyone else to judge?

    Hopefully, they can get you out of that extreme pain and bring back some sense of calm. Keep posting. Rooting for you!
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  24. #24
    Ilovemtndogs7 is offline Advanced Member
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    Hi Autumn-

    I hope some of your pain has been relieved. How are you doing? It’s probably quite difficult to read and post with your blurry vision. If you even have the desire to post.

    Please know people here are thinking of you, sending positive thoughts and caring your way. As Leo said, Rooting For You. Sheryl
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  25. #25
    Autumnhopes is offline Member
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    I am posting to all of you via my speech enhancer on my phone because my eyes are still not good enough to type but they’re getting better every day I spent 10 days in the hospital and they put me on very high dose steroids and they are now bringing me down they definitely had me climbing the walls and they had me on benzo’s just to try to keep me down it’s been a nightmare I total nightmare .This is not the way I like to live and this is not me it’s been a very difficult 10 days but I lost my vision at twice and both eyes and in my left eyes several times so we did what we had to do I also lost my mobility in my left leg and I have to use a walker to get around or a cane arm it’s getting a little bit better but I’m thankful for all of your thoughts your considerations your prayers everyone has been so kind and I’m so so thankful!!!!’

    I’m trying to keep in high spirits and I put recommended to go to the Mount Sinai MS Center to get further treatment for my MS and to also keep positive spirits which is very very important very slight exercise routine that doesn’t tire me out too much and I’m a little bit of physical rehabilitation..., it’s easy to be negative and just given but I refuse to I refuse to have first I felt pretty down about my diagnosis about where things might take me but a matter where it takes me I’m not gonna let it get myself down and I appreciate all your thoughts and how everybody been so helpful in helping me keep a high spirits thank you for all of that I’d love to give shout outs to everyone tonight and a lot of life so thank you for that I’m back home tonight this is my first night home and it feels wonderful thank you all and good night!! xoxoxo

  26. #26
    Autumnhopes is offline Member
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    Default FINALLY home after 11 days in the hospital

    What a nightmare it's been 11 days in the hospital on intense intravenous steroids for five days getting a spinal tap (LP) done .....
    four more MRIs so many tests bloodwork,,, constantly doctors this & that... it's been too much to even talk about I'm so exhausted


    The fatigue has been so draining now they have me on prednisones for the next two weeks which I hate and it's been making me jittery and then other times I literally can't barely lift my head off the pillow I'm just trying to survive here ,,,,,is what I feel like I hate being negative I love coming here and being positive and I'm going to conquer the world but today.....

    I need encouragement so bad I need I need to hear it's going to be OK even though I know it's going to be OK I just need to hear it from some of your form friends a lot of my friends around have been very supportive and really really great but I need to hear it from you guys to that it's going to be OK and I am going to be able to conquer the world

    Another rough topic is that my doctors gave me pills of the dilaudid and I haven't taken them they've sat there and I just haven't taken them I don't know why but I don't even care anymore they old me would've been slurping them...... chomping Them......but I just don't care what's wrong with me I just I don't care


    Please hop on hear to say something today and I need to hear something today something positive something good something silly something something I'm just in such a slump
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  27. #27
    ChiefChe is offline Senior Member
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    Default Peek-a-Boo

    Just what makes that lil ‘ole ant,
    Think she can move that rubber tree plant.
    Anyone knows an ant can’t move a rubber tree plant
    -BUT she’s got high hopes. Highly Apple pie in the sky hopes!!!

    It’s ALL gonna be OK Luvie! It has to be...no other choice. Of course we know there’s other choices but we’re only looking on the bright side from now on.

    I got you on my list. Now, just need the time so I can get to diggin through this bottomless bag of tricks of mine. I also need a new phone!!! This one is dying a slow & excruciating death. Hopefully I’m blessed with one soon b/c as always I’ve got lots to say.

    Now, I haven’t done my research but is what you just went thru considered a flare up? I‘m sure all the stress from the initial diagnosis threw u out of whack. I pray that’s it & now we just have to get you settled into a new normal. Just remember- Time & patience will be your new best friends while we babystep thru this.

    I’m so Proud of you for how far you come with your relationship with the pills. Once you romanticized about them & now you just have them there....Keep it that way. I think you know now when you Need them >> wanting them.

    Pls keep posting your positive vibes on here. THE more positives you send out the more you will receive back plus some.

    Happy is what Happy Does,

    ❤️
    Che

  28. #28
    Beefaroni7272 is offline Advanced Member
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    Hey Autumn. I'm glad you're home now and hopefully resting comfortably. Congratulations, I'm so proud of you with the pills your doctor gave you. I'm sure there are so many that wouldn't have been able to display the will power and determination you've showed. I'm not sure I would have been able to do that. Especially with all you've been going through in the last 11 days.

    Everything is gonna be ok. I don't know much about MS. But everything CC posted sounds good to me. Let's just call it a flare up and move on from here. Keep posting and keep your head up and keep on trucking. Everything will be ok. And you will find your new normal. Every day isn't gonna be like the last 11 days that you just went through.

    We are all so proud of you!!!
    Beef
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  29. #29
    Autumnhopes is offline Member
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    Default So........ Today got certified for medical marij---a (MMJ)

    Shout out To CC & Beef!!
    Thank you for your comments I really appreciate it it means so much to me when I come online and I see that someone has posted on my thread,, it really means a lot so thank you for reaching out!! I know you both have your hands full but thank you so so much

    ***Topic: MMJ
    I know I keep going back there but I just haven't gotten a lot of response and I really want debate on marij~~~a medically on what people think I know it's considered a schedule one drug and because of that some states consider it still illegal but I got certification from the doctor today and registered online with the government and I'm able to go tomorrow>> to hopefully get some real pain relief for my MS, for my migraines, to get help with nausea also to be able to sleep to,,,help with the bone dragging fatigue and also the depression and anxiety!!!!! really they say that it can help me with everything and I want to see how much it (MMJ) can do and I really want to know has anyone else tried it and other any other thoughts out there at this point.....

    IM BEGGING PLEASE POST COMMENTS!
    UncleLeo likes this.

  30. #30
    ChiefChe is offline Senior Member
    Join Date
    Apr 2017
    Posts
    615

    Default

    Hi Hun,

    I really wanted to stop by to debate but the stanky janky phone is not having it. I’ll just say I’m all for the medical benefits of MJ. Only disclaimer is- We’re addicts. We’re known for unhealthy relationships & over Indulgence. Good thing is that the MJ comes in many forms.

    I’ll keep my fingers crossed & u keep us posted- k??

    Praying for a new Phone,

    ❤️
    CC

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