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Hello after a long time.

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    Hello after a long time.

    Hi, everyone. It's been a while since I posted. Hope you all are well. I have had some MS progression. I've been in neuro physical therapy for 2 months. I can no longer feel the bottoms of my feet. I have developed foot drop and am trying to get a foot drop system. I've been working on getting help, financially as my insurance won't cover it. Has anyone used one before? If I develop foot drop without a flare, does that mean it's likely permanent? I've lost bladder control again and my balance is terrible. I get scared when I walk because I've fallen so many times. Just curious to see what others have been through.

    Lastly, my life has been so crazy. My world has turned upside down. In March, my spouse of 23 years came out as transgender, male to female. We've been together for 25 years. We have decided to stay together, but it hasn't been easy for me. I cry a lot and feel really alone. All our friends and my spouse's family are completely accepting. My family doesn't know yet. I'm afraid they will cut me off completely. I believe my spouse has a right to live her life as she sees fit. It's just been really hard to cope with, basically, losing my husband. We are currently trying to get in to see a marriage counselor. We each have separate therapists right now. I wonder if all that stress has contributed to my issues with walking, balance, and bladder control.

    Between being an essential worker at a large hospital, taking care of my son, on the autism spectrum, accepting my husband as my wife, and the general wear and tear of living in this crazy country, I feel like I just want to go to bed and hibernate for a few months. I am still counting my blessings. Life could be worse. I'm not giving up. I'm just stretched to my absolute limit. Thanks for listening to my tale of woe.

    Wow. I see the squeaky wheel still gets the grease around here (more than 17 responses). Nothing is going right in my life right now. I was hoping I was missed, I guess. I don't know what I was looking for. It's hard to grieve alone. I'm tired. I'm lonely. I'm sad. My future is so uncertain. You all take care. I don't blame anyone. I'm not mad. I'm just exhausted.


      Kitty i don’t write too often and only when I think I can help.
      I hope your foot drop goes away
      I think sometimes it does. Mine never really did I just got used to walking different and being way more selective with my foot wear.
      I can’t even imagine what you’re going through in life and the stress which by the way makes MS a little worse. I was going to say something sooner but honestly didn’t know what. It’s so hard to listen of our struggles in life when you think MS is the only thing we should have to deal with. It’s quite enough on it’s own. Here’s hoping that this is just a “rough place “ to be in right now and things can and will only get better. I mean I was floored when you told everything and didn’t know what to say. Sorry for not showing you some support earlier. Wishing you the strength you’ll need to carry on. There’s no way I could even imagine what it would be like in your shoes right now. Take the best of care and good luck. Look after yourself best you can and deal with your priorities best you can. It would be hard living a life as someone you are not. I understand some things. I really only write when I think I can be of some help and I’m not sure I’ve been. Do try to take care.
      It was one agains't 2.5million toughest one we ever fought.


        Hi kittysmith,

        Please don't be offended. It has been a little quieter on the board of late.

        I think anyone would be overwhelmed by what you are experiencing right now. Your feelings are what anyone would have in the circumstance - I know I would be lostvand not sure where to turn.

        In regards to your spouse, I am glad your friends and part of the family is accepting. While they may not have the intimate spousal relationship, any chance one or more may also be struggling some and/or you can share some of your emotions with them?

        As for notifying your family, you can't control their reaction. I would pray they would not ostracize you and your son, but there are some people who can never accept the situation. You can only do what feels right to you and for your family. I give you tremendous credit for accepting the change. I pray you can get into counseling together as you move ahead.

        ​​​​​​​I am sorry to hear you are progressing. I am sure the stress can't be helping you. Please take care of yourself and keep up with your individual counseling too.
        DX 01/06, currently on Tysabri


          Oh, my. That is way too much stress for one person to cope with at one time! I am so, so sorry. Have you considered taking a leave from work so that you can focus on your health, family and mental wellness? I am so happy you have a therapist that can help you navigate this difficult time. I have several close friends whose adult children have come out as transgender, including my best friend. I would be lying if I said the process of acceptance has been easy for any of them. One of my co-workers had her wife come out as transgender (female to male) after 30 years together. They have all lost some friends but friend that doesn't support you, was never your really your friend. Several had family members that have turned their back on them, too. Have you joined a support group? There are many good ones online and I can ask my friends for a recommendation.

          I have pretty significant foot drop. I am now using a great light weight carbon composite AFO. It fits right inside my Sketcher running shoes and helps immensely. My insurance covered it in full. My physical therapist has me using walking poles and they have me feeling much safer after multiple falls. Maybe you can look into those as an option. The brace is very low profile and can be hidden under your pants. I can give you the name if you are interested.

          Bladder function is a big issue for me and I have to cath 2 times a day at minimum. Have you seen a uro-gynecologist and had uro-dynamic testing? There are several good treatment options and beneficial to know exactly what is going on. Stress affects my MS symptoms negatively. I have had bad MS relapses during periods of extreme stress. I hope you are in close contact with your neurologist and have had updated imaging.

          A quote that I love from Vincent Van Gogh says, "There is peace even in the storm". I hope you are able to find some peace every day, even if it is only for a few minutes. Make sure you focus on what is best for you, too and not only what is best for your spouse and son. Your happiness is important, too. It is going to be hard but you will get through this. Let me know if there is anything I can do to help.


            "I am still counting my blessings. Life could be worse. I'm not giving up." Those words at the end of your first post show such courage. I really admire your attitude and wonder if I could be so brave under such terrible circumstances. Keep posting, please and let us know how your are doing.


              Ahhh, kittysmith. I'm so sorry to hear of your tales of woes. Life is sometimes NOT fair and you have been given so many challenges! You are a strong woman, one to be admired for not giving up in the face of your circumstances.

              I hope you give yourself permission to grieve and pamper to yourself during this time. Could you take some time off work for awhile? I know first hand what stress can do to ramp up one's symptoms and I hope you can find better days ahead.

              And like loopey says, I'm also encouraged of your words "I am still counting my blessings. Life could be worse. I'm not giving up."
              Thinking of you with prayers!

              1st sx '89 Dx '99 w/RRMS - SP since 2010
              Administrator Message Boards/Moderator


                So glad to see you in the group again. I know you're going through some hard times. It will pass. I have no advice or suggestions. Just keep doing what you are doing. Things change in our lives. Feel better.... There really are no words to comfort you right now. We love you.

                The only cure for insomnia is to get more sleep.


                  Kitti, I am also sorry to hear about your stress. You are experiencing loss and grieving. Seasha is right. The boards have been less busy, and, even as a mod, I tend to check new posts less frequently. Sorry for the delay you experienced in receiving replies.

                  Just want to express ((Care)).
                  ~ 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.


                    Well, I feel awful for not being patient for your messages. I hope you will accept my apology. I've not been myself (read: emotional wreck). When you have MS and something else big happens, it just makes you feel like, what next? You all have been so kind to me over the years. I am a bit lost right now, but I am determined not to give up. Hope you all are well. It's nice to be back in touch with the group.


                      It's nice to also have you back in touch with us. Keep checking in as we do care and hand you a shoulder to lean on!

                      And no need to apologize! You are under a lot of stress
                      1st sx '89 Dx '99 w/RRMS - SP since 2010
                      Administrator Message Boards/Moderator