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    #31
    update

    Sorry I haven't posted in a few days. Well I'm now in the Skilled Nursing Unit of the hospital. I have my own room and some actual privacy (in the hospital! can you believe that?), and not as many constant new nurses in and out all the time. There's only 15 rooms here and it's considered separate from the hospital. Oh and I've got my own walk/roll in shower! PT and OT is more intense, which is what I need. It's exhausting and painful, but I refuse to give up. Children under 12 aren't allowed in this area so I haven't been able to hug my daughter in 10 days. (Yes, I've been away from home that long.) I see/talk to her 2 or 3 times a day on skype, which is wonderful, but nothing can replace physical contact. The worst part is that even though I'm trying like heck, I don't seem to be making any progress. I still can't stand, transfer or anything without 2 people helping. My legs were just tested and I have very little feeling below my belly button. And since I have had a catheter in for so long now I've got a UTI. Don't have a choice in that since I can't get to the bathroom or even a potty chair. Sorry lots of info in this update.
    Diagnosed December 20, 2011
    Avonex: February 10, 2012 - March 16, 2013
    Tysabri: June 28, 2013 - May 23, 2014
    Betaseron: August 15, 2014 - March 10, 2015
    Aubagio: June 18, 2015 - current

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      #32
      So gooood to hear from you!! YEAH!!

      But what kind of rule disallows your own child from visiting? Really? Really!! I wonder if she could see you from another part of this building/hosp? Fight to see her!

      Sorry you are not progressing like you want. Is being that numb new? What is their treatment plan then?

      Keep us informed and know that me and others are looking forward to hearing from you.. always!

      Hugs, Jan
      I believe in miracles~!
      2004 Benign MS 2008 NOT MS
      Finally DX: RR MS 02.24.10

      Comment


        #33
        Yes! it is good to hear from you and that have found a place for you! But, it's sad that you can't physically see your daughter. I'm baffled by that too!

        Hang it there cupcakes! Keep up with those PT and OT instructions - it sounds like you have a good attitude despite the circumstances. You are fighting a good battle!!

        We're cheering for you
        1st sx '89 Dx '99 w/RRMS - SP since 2010
        Administrator Message Boards/Moderator

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          #34
          This unit is considered separate from the hospital and more private and quiet. Children are a disruption/distraction for the patients receiving help here. There is an area outside this where kids can come but I have to be able to go there. My family wants to all visit this weekend because it's Easter, but I don't know if I will be able to yet. I trying. Today pt referenced being able to go there next week maybe.

          Before my "flare" I could walk with a walker about 10 steps at a time. Now I can't even get my legs to hold me up at all. My knees won't lock.
          Diagnosed December 20, 2011
          Avonex: February 10, 2012 - March 16, 2013
          Tysabri: June 28, 2013 - May 23, 2014
          Betaseron: August 15, 2014 - March 10, 2015
          Aubagio: June 18, 2015 - current

          Comment


            #35
            Can they put you in a wheelchair and wheel you outside to see your daughter??
            1st sx '89 Dx '99 w/RRMS - SP since 2010
            Administrator Message Boards/Moderator

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              #36
              That's the goal. But so far I can't transfer to one.
              Diagnosed December 20, 2011
              Avonex: February 10, 2012 - March 16, 2013
              Tysabri: June 28, 2013 - May 23, 2014
              Betaseron: August 15, 2014 - March 10, 2015
              Aubagio: June 18, 2015 - current

              Comment


                #37
                I'm glad you have peace and quiet and a more comfortable place to heal. It's unfortunate about your daughter. Maybe whomever brings her, or a nurse, can help you transfer so that you can then go see your daughter in another section. I hope you find a solution.

                It does sound like you're getting lots of care. Up until just a few weeks ago, I was bedridden and couldn't transfer. I'm now transferring on my own without problem. Don't lose hope, just do your PT and OT requirements to the best of your ability. It's worth it!

                It's nice to get news from you so keep in touch!

                Get well soon!
                When I can laugh at my experiences, I own them and they don't own me!

                Comment


                  #38
                  Originally posted by CaroleL View Post
                  I'm glad you have peace and quiet and a more comfortable place to heal. It's unfortunate about your daughter. Maybe whomever brings her, or a nurse, can help you transfer so that you can then go see your daughter in another section. I hope you find a solution.

                  It does sound like you're getting lots of care. Up until just a few weeks ago, I was bedridden and couldn't transfer. I'm now transferring on my own without problem. Don't lose hope, just do your PT and OT requirements to the best of your ability. It's worth it!

                  It's nice to get news from you so keep in touch!

                  Get well soon!
                  Thank you for giving me hope that maybe I can get "better". It's really good for me to know that pt and ot aren't just trying to kill me, lol. And congratulations that you can now do it on your own!
                  Diagnosed December 20, 2011
                  Avonex: February 10, 2012 - March 16, 2013
                  Tysabri: June 28, 2013 - May 23, 2014
                  Betaseron: August 15, 2014 - March 10, 2015
                  Aubagio: June 18, 2015 - current

                  Comment


                    #39
                    I live in Texas also and have not run into a facility that did not allow your child to visit! That is cruel! You and your poor baby! My Grand-daughter has brain cancer and when she has been in the hosp in Ft Worth she can have her 5yr old in her room anytime.

                    I have been in a Flare for almost a month, but I try to avoid a hosp stay because my husband is 74 and has a lot of health issues. I worry abt him being alone.

                    I am so sorry you are having so many problems. But after the steroid treatments and PT it will get better!
                    Think positive! I know for a fact that it helps. I was told 22 yrs ago that I had 2 yrs to live, because I had stage 4 Melanoma. BUT GUESS WHAT??? I'M STILL HERE...LOL
                    Sissy

                    Comment


                      #40
                      I understand that you cant transfer but why can't they place you by lifting you and putting you into the wheelchair so you can go see your daughter?

                      I went from being mostly ok (MS wise) to being paralyzed and in a wheelchair literally overnight. None of the treatments worked for me but I learned to live in a new way. Sometimes things can be frustrating but I can do whatever I put my mind to just in a different way :-)

                      Comment


                        #41
                        Get Better Soon

                        Hi there Cupcakes, I am new to forum, and have read your story. I pray you get well real soon.
                        I am sorry they wont allow you to see your daughter, that' just cruel.
                        I hope you can get transferred to w/c so you can see her this weekend.
                        Anyway I wanted to introduce myself, and wish you well..Take care
                        God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference.

                        Comment


                          #42
                          update

                          Hello again. I'm still in the hospital. Just received more iv steriods. Still getting pt, still getting stronger. It's just a sloooooooow process. I did get to see my daughter last Sunday! She had to wear a mask in the hall but got to take it off when closed up in my room. I just wanted to keep hugging/holding and kissing her.
                          Diagnosed December 20, 2011
                          Avonex: February 10, 2012 - March 16, 2013
                          Tysabri: June 28, 2013 - May 23, 2014
                          Betaseron: August 15, 2014 - March 10, 2015
                          Aubagio: June 18, 2015 - current

                          Comment


                            #43
                            Awww how wonderful that you and your daughter got to hug it out! Does she understand the limitations on whether she can see you or not?

                            That hug and SEEing her, is the best medicine!!!

                            Glad you are improving.. healing is slow, but worth it!

                            Keep us informed hon..
                            sending you a gentle HUG!!

                            Jan
                            I believe in miracles~!
                            2004 Benign MS 2008 NOT MS
                            Finally DX: RR MS 02.24.10

                            Comment


                              #44
                              She understands that I'm sick and at the hospital getting better. And when I'm better I'll get to come home and be with her again. I've been in a wheelchair for a year and a half, and before that I used a walker for several months so she doesn't have many memories of me before I got "sick". Thankfully she happened to be at my sister's house when the ambulance picked me up, so she doesn't have that scary memory. Pt went good today. Still getting stronger, but nowhere strong enough to go home yet.
                              Diagnosed December 20, 2011
                              Avonex: February 10, 2012 - March 16, 2013
                              Tysabri: June 28, 2013 - May 23, 2014
                              Betaseron: August 15, 2014 - March 10, 2015
                              Aubagio: June 18, 2015 - current

                              Comment


                                #45
                                Keep up the good work Cupcakes!!!
                                When I can laugh at my experiences, I own them and they don't own me!

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