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    *sigh*

    I am so ready to admit defeat right now. I use that warrior rhetoric in my head, but lately I've been saying, for what? Why? When my doctor called and said "you're pregnant" it was the happiest day of my life. I said when I got that 6 week ultrasound I would announce, and right after I did she died. I decided to take a break so three months later my thumb and index finger went completely numb.

    At work this person I was hiring began to show really bad judgement and downtown elected not to process him but he flipped out and was recording me and taking photographs without me permission. Before I sent a cease and desist letter he said he hoped I would die alone because I would make a horrible (used another word) mother. Completely unrelated but I was downtown buying teaching supplies and this guy running tackled me from behind, injuring my hip, slammed my head into the ground, and spat in my face. I went to the preliminary hearing and he didn't show and it didn't matter because they hadn't arranged for an interpreter for him. Three days later I was robbed at a gas station.

    I went to an urgent care center and asked her to do a really through differential with an open mind. I've been relapse free for over six years and was hoping it wasn't progression. The sx went away around the first week of January and I was so happy, but then I got L'hermitte's in those fingers and it was like being slapped in the face. This sx breaks your heart, you get distracted and forget about MS but then you move your head a bit without a thought it's like I'M STILL EATING HOLES IN YOUR PRECIOUS CPU. I know it's not the worst relapse ever but I believe I have tumefactive MS and it does seem to have that progression profile but I also read some people with it have one major attack and that's it. But not me. Neuro no hope because he "doesn't believe in labels."

    I was getting ready to move and seemed to have good communication with the person I was going to rent the house from but he ghosted and I just let it go if he's a flake, my credit score is near perfect zero debt no smoking, etc. etc. so I don't know, but it doesn't matter because of my hip I'm in a maze of half packed boxes and I can't even vacuum. I stopped going to my therapist because I forgot two appointments and was charged, they were in my day planner and I had a post-it note but it didn't matter. I was speaking to my boss and I spoke over her and she lectured me about how I was rude and I was shattered inside but the cognitive stuff is always making your life difficult and undermining you too, I am not a rude person.

    I'm also totally alone which is very difficult right now. I went back to my home state for a little under a week but I had a bad cold and PMS and was basically just a lump my mother shoveled food into. Everyone seemed to be under the impression I wasn't coming back up here but I'm not sure why. She said, "you're leaving" and I'm like well I'm not independently wealthy, so. If we dial 911 we have to call our boss so when I was telling her about the ex-in-hire before I flew down she said in most condescending voice imaginable you have to put the request in writing and I said I emailed you over three weeks ago so she said resend it and I will consider. So I had to nail bite because I had already bought the tickets.

    One last thing. My old boss we used to be closer but not anymore, she's super busy but one day she calls all excited because guess what, someone she went to HS with has MS too and had to quit her nursing job and our lives were very similar and we're the same age. She's on tysabri have I heard of it? So I friend her on social media and send a lighthearted intro, /seen ignores me I try again, not laying heavy stuff on but like oh this happened, sucks huh /seen ignores me. So I give up, it's hard to make new friends after 35, but I feel for me it's just impossible. Everything's so non-trivial and depressing, AU on fire, half the planet dead, cratering inside somatically, crime though the roof, work difficult, too cold to go outside, it would be so nice to have a cup of coffee with someone but even that is asking too much. I don't even know what to do. Get an MRI? I have one healthy embryo left so it would just be informational. Continue to look for a new place first? Hire someone to clean this dust-riddled pile of filth around the boxes? Give up and just eat, sleep, go to work and let things devolve around me?

    #2
    Really sorry to hear you are struggling right now. I am also sorry to hear about your loss. That must be really difficult to get over.

    You definitely have had a run of misfortune that would get anyone down. Not to mention some of your experiences had to be scary as well.

    Agree there is a certain age that if you don't have kids, it is harder to meet new friends. People are caught up with their daily lives, kids, etc... But it is still possible. Don't give up. It is easier if you are in places where you might have shared interests, like gyms, volunteering, crafts, etc. .

    Since you reached out on FB to your ex-bosses friend, maybe a support group locally could help? I wouldn't read too much into them not responding. They may be in a stage where they want to ignore MS as much as possible.

    Have had L'hermites too, no fun. It went away after relapse, but 12 years later, reappeared but with lower intensity thankfully. But yes, hard to forget when you get zapped when you move your head a certain way.

    As for type of MS, what makes you feel you have tumefactive MS vs RRMS? Did your MRIs show that way?

    Since you seem a little overwhelmed and depressed right now, do you see a therapist? It might help you to feel more in control. I know we all get overwhelmed at times, but if it lingers, definitely see someone.

    Hope you check back in soon.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      Hi dyin_myelin.

      I said when I got that 6 week ultrasound I would announce, and right after I did she died.
      I am so very sorry for your loss


      I decided to take a break so three months later my thumb and index finger went completely numb.
      I've been relapse free for over six years and was hoping it wasn't progression. The sx went away around the first week of January
      It's possible to go x amount of years without a relapse and then have one, that's kinda how RRMS works. Tumefactive MS presents differently on MRIs than regular RR and is usually more severe. From what you have written it doesn't "appear" to be Tumefactive unless your MRIs and/or Neurologist has indicated this to be the case.

      this guy running tackled me from behind, injuring my hip, slammed my head into the ground

      I got L'hermitte's in those fingers and it was like being slapped in the face.
      Lhermitte's, in MS, is caused by Cervical Spinal Cord lesions. It's important to not assume you are dealing with Lhermitte's' until ruling out a possible cervical spine injury due to being knocked to the ground and hitting your head. I'm sure your Neurologist or even your PCP would do a Cervical MRI and/or x-ray to rule in/out a spine injury or if it's MS related.

      Multiple Sclerosis is still known as a progressive disease regardless of what type you may have. Each person is different, some progress very slowly, some quickly, and some are in-between those two. Progression is more about disability than the symptoms themselves. Progression = disabilities.

      I hope you see some light at the end of the tunnel soon. Seeing a Therapist and/or Psychiatrist might be very helpful for you at this time. Take care
      Diagnosed 1984
      “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

      Comment


        #4
        I'm sorry, dyin_myelin, for your loss. A ND you've had challenge after challenge present itself to you recently.

        I applaud you for trying to reach out to others and form friendships. I encourage you to keep trying. Volunteering, work, church, ? I don't know where. Do you have family close by? It sounds like some of them are far away.
        ~ Faith
        MSWorld Volunteer -- Moderator since JUN2012
        (now a Mimibug)

        Symptoms began in JAN02
        - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
        - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
        .

        - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
        - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

        Comment


          #5
          Hi dyin myelin,

          So sorry to learn about your loss and all that's been happening with you. You've been through enough in a short time to get even the best of us down.

          Those were some scary encounters downtown! I'm just glad your bodily injuries weren't worse. Going back downtown after that, especially alone, would definitely cause me a great deal of anxiety. I don't know if I could go there again, at least not for a long time.

          Stress can cause a relapse. Snoopy makes a good point that your Lhermitte's sign could be due to injury and not MS.

          An MRI might give you some answers regarding new MS activity.

          Give yourself some time before trying to conceive again. The stressors you've had lately aren't ideal for becoming pregnant or carrying a baby to full term. Extra pregnancy weight will further aggravate your hip pain. I also know your chances of conception are lower with one embryo.

          As far as Facebook, maybe this person doesn't acknowledge anyone she doesn't know. I'm that way.

          Moving is stressful. But where you are living now might be more stressful. My first MS attack (misdiagnosed as something else) was right before a move, but I also had some other stressful events going on that I believe contributed to it. It wasn't easy to pack up the house with my symptoms. If you can, give your hip and L'hermitte's sign time to improve first before considering moving.

          I agree that meeting new people will require involvement with an activity like those mentioned or interests you.

          Sorry to hear about your missed appointments, reaching out to your therapist might be a good thing. I know I couldn't keep all of my emotions inside if those things all happened to me.

          Wishing you better days
          Last edited by KoKo; 02-04-2020, 07:27 AM. Reason: poster request
          Kimba

          “When you change the way you look at things, the things you look at change.” ― Max Planck

          Comment


            #6
            Thanks everyone, for reading all of that.
            So my neuro said to come in at 7 AM and he'd squeeze me in if I was in a flare. I tried to push for an MRI so we could discuss it in one visit, last one I got was in October of 2018. I guess I shot myself in the foot here. We have access to a nurse hotline through our union, and this really nice nurse said she would make the appt for me and go with me. But they said they wouldn't script an MRI unless they examined me, and said that I couldn't be seen until mid-May. We screened for a UTI. I said oh I dip at home, I'm good, but the front end staff at the neuro's said that they would culture it. So that was clear.

            My ex is being really openly hostile about the whole thing. I mean first he says that MS is just a conspiracy between hysterical middle-aged women and money-hungry doctors (which you think he would want to support me de-fragmenting my care/cost insurance less??), but then says "don't tell them to 'script an MRI' and try to sound intelligent, because you're not." I dunno, I like to participate in my care, also take off work, arrange transportation downtown, streamline everything.

            Half my hand is still numb, with some weakness and spasticity in my forearms/upper arm on right side and in my left calf. It predated the assault so I'm assuming it's MS probably, but not related? The size of the lesion and the severity of the symptoms caused fit the criteria of tumefactive MS (originally they said it was a brain tumor). But like I said my neuro doesn't believe in labels (or I guess RRMS he has to for treatment). Most TM follows a remitting relapsing course but there seems to be a longer lag time to the second relapse. Now the research is saying that benign MS is really just RRMS but the person got lucky with lesion placement, so it may be not even a subtype.

            Yes, my family is five states away. I know sometimes my social media stuff goes to another folder if I don't know the person. I was just very excited because my boss told this person about me and she said she was excited to meet me. And I could see that my messages were "seen" by her. Maybe there was still some confusion. I used to go to a support group in the NE when I worked up there. It was nice because they would give out a lunch ticket and we'd watch informational movies and have guest speakers. I also go to social things if they have to do with science or cocktail and a lecture. But in all cases, even if I hit it off with someone, it never goes any further. I even now go out of my comfort zone and say can I have your contact info or FB, but I feel like I don't want to badger and leave the ball in their court so to speak?

            I got a massive ticket picking my ex up at the tire place. I had totally forgot to re-register my car and it's $140. I feel like the Red Queen, like I'm running and running and I'm still in the same place.

            Comment


              #7
              Hello Miss Myelin!

              You are such a delight! You are refreshing because you are so honest. Some of things I like about you besides honesty are your intellect and sense of humor; those always come through even when you are describing your life like a pile of stinky socks in a dirty locker room.

              When I get down or feel overwhelmed I take it easy and let things come to me rather than pursue life aggressively. I have a ton of favorite quotes I kept over the years which mean something to me and I spend time with those, letting the peace, perspective, joy, love, and goodness of life they describe affect me.

              Here are just 3... "The mind is formed by what it takes in…" Will Durant

              "The most beautiful things in the world cannot be seen or even touched, they must be felt with the heart..." Helen Keller

              "The universe is transformation; our life is what our thoughts make it …" Marcus Aurelius

              There is a thread here at MS World of favorite quotes that is really good, also.

              Miss Myelin, you make me smile! You possess the most endearing character. It is a struggle for each of us to reboot our minds with positive thoughts and influences which we trust, overtime, will make a difference for the better.

              I don't know who said this but its in my quotes... "Life isn't about waiting for the storm to pass; it's learning to dance in the rain!" We are all learning to dance in the rain.

              Comment


                #8
                Hi dyin_myelin!

                I just wanted to check in and see how you are doing. Did you wind up getting the MRI and get in to see your neuro about possible flare? Did you wind up moving? I heard they just put the city in lock down - are you working still? I know you were struggling some before the covid-19 craziness and the self-isolation can't make it any easier. I try to get out and walk each day, but rainy days like this make it hard. Even if I do, I don't usually see anyone to even say hello to.

                I hope we hear from you and that you are healthy and safe.
                Kathy
                DX 01/06, currently on Tysabri

                Comment


                  #9
                  You have enough on your plate without MS. I agree that it is good to be in situations where you are working side by side towards a common goal. You can connect that way. If you go to coffee listen. Let them talk about themselves. It’s sometimes easy to fall into the trap of treating friends like therapists.

                  Self reveal slowly. It’s ok to spill it all out to us but getting to know someone take your time.

                  Right now is particularly difficult. But someone has got to make the masks.

                  Comment


                    #10
                    Thank you Myoak, Penn and palmtree for thinking of me as things get more surreal and harder to deal with. /virtual germ-free hug

                    I'm still working. I don't have to, I would get paid if I didn't but I get time and a half and lots of kudos emails. I've been off DMs for a year with the fertility stuff, my lungs are healthy, an article actually included me in an age group of of "young adults," and I try to mitigate my risk with hospital masks, gloves, and hand sanitizer. I do know that people my age are dying though. I think working is keeping me sane, but I do have bouts of anxiety and have been thinking a lot about my family back in FL and hoping they are ok and I see them again.

                    No, I never got that MRI. I had a physical scheduled and was debating whether to go to that (they said they were screening for COVID but then canceled all appointments the day before). Not sure what the situation will be with Jefferson in a month, not very hopeful and I think it's best to avoid healthcare settings for a while. Sometimes my forearms are weak, but if not and I'm working on something else I can distract myself from the numbness. I'm trying to do that as much as possible. If I've had a stroke or a massive lesion or just a tiny spot on the mend there's nothing I can do about it.

                    Sorry that it rained all weekend, but it does keep people inside. And, it's getting warmer. My LL bought a new AC unit for me. My boss, before we stopped working or elected to be re-assigned, actually sent out an email talking about our "new normal." Although I hate that term it really can be anyone's reality through no fault of their own and quickly. I see people processing it the same ways, praying, having setbacks, reaching out after being distant, depersonalizing and drinking more, etc. Most of all, tomorrow is a total black box. More death? Societal collapse? A cure? Cures? Will we wake up blind, unable to walk, without bladder control? I've lost a lot of money, but I still have my life. I know two people who were fired. We'll do the best we can, with kindness, and hope for the best.

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