Bad day!!!!!
The last few weeks I have been slowly getting worse. I had a course of steroids but they did not work. I was told that would happen sooner or later. It was starting to happen last yr. But when they started the chemo it seemed to boost the steroids & they worked better then ever. Right now I am 2.5 months over due for the chemo, may be that has something to do with it. Four days ago the numbness came back quit quickly. I got the "MS Hug" for me it is not just the tightness around the bottom ribs I can not move them so I can not take a deep breath. The feeling came back but the unable to move the ribs stayed. Three days ago my left arm went numb & I could not move it. That lasted for a couple of days. It is better now. Last evening my arm came back to life then the numbness was in my legs & groin. I see the MS doc next week we are going to talk about the chemo. I think I need to go up in dosing. I do not know if the chemo is going to help the steroids to work better or not.
Bruce had the fluid drain out from around his lung. He felt so good he could breath better. He can do thing once again. He has taken off 20 lbs between the new fluid pills & getting the lung drained. Two days ago he thought he put on some fluid back around he heart & lungs. We will just have to wait & see.
I finally called my Dad. It went ok for the most part. I told him I have MS & live in hospital. He said he will come down to see me this summer. When I told the nurse last night she told me to make sure to schedule the visit around the steroids. As I am more emotional when I get them. That makes sense. I want to be able to enjoy the visit. Dad got very quite when I told he about MS. When I was 14 I went cross-country skiing I had a day where I kept falling. The teacher was concerned but Dad decided I wanted attention. It was that way all through my teens & twenties. All of the weird symptoms were in my head. Now knowing I had MS it makes sense. But he feels he has failed me. Bruce does not like my Dad & agrees that he failed me. Bruce left the decision to call my Dad up to me, he supports me but it was my decision not his. He did tell me after the call that he is mad at my family as none of them supported me. All through our marriage he has support me & helped me even when the doc's said nothing was wrong he said he knew but there was nothing he could do to convince the doc's but he could help me to endure it, to help make my days a bit brighter. To let me know if no one else did he believed me. He thinks that my family should have as well. You are suppose to be there for your family, Wife & Kids especially.
It is funny how he thinks. He tells me over & over again he wanted a Mother-in law. I kept telling him he had one my Step-Mum. The way my family treated me he did not think of my Dad, Step-Mum, Step-Brother, Sister, Brother In-law, two nieces & a nephew as family. He could not understand how they treated me. After a few yrs of marriage I cut all ties to my family. I have been happier for it. I think I am ready to try again. I think now I am ready to be my own person. Not to try to be what they want. Take me as I am or leave.
I also realized I am still emotional about having MS. I saw my OT & the guy from the place I got my chair. Talking about what was happening I started to cry. It is hard to talk about how you are losing function. And when you are talking about what you need from a chair & why talking in detail about how bad you really are. I am trying not to dwell on it. Worrying about it will not help. Live each day one at a time.
Bruce had the fluid drain out from around his lung. He felt so good he could breath better. He can do thing once again. He has taken off 20 lbs between the new fluid pills & getting the lung drained. Two days ago he thought he put on some fluid back around he heart & lungs. We will just have to wait & see.
I finally called my Dad. It went ok for the most part. I told him I have MS & live in hospital. He said he will come down to see me this summer. When I told the nurse last night she told me to make sure to schedule the visit around the steroids. As I am more emotional when I get them. That makes sense. I want to be able to enjoy the visit. Dad got very quite when I told he about MS. When I was 14 I went cross-country skiing I had a day where I kept falling. The teacher was concerned but Dad decided I wanted attention. It was that way all through my teens & twenties. All of the weird symptoms were in my head. Now knowing I had MS it makes sense. But he feels he has failed me. Bruce does not like my Dad & agrees that he failed me. Bruce left the decision to call my Dad up to me, he supports me but it was my decision not his. He did tell me after the call that he is mad at my family as none of them supported me. All through our marriage he has support me & helped me even when the doc's said nothing was wrong he said he knew but there was nothing he could do to convince the doc's but he could help me to endure it, to help make my days a bit brighter. To let me know if no one else did he believed me. He thinks that my family should have as well. You are suppose to be there for your family, Wife & Kids especially.
It is funny how he thinks. He tells me over & over again he wanted a Mother-in law. I kept telling him he had one my Step-Mum. The way my family treated me he did not think of my Dad, Step-Mum, Step-Brother, Sister, Brother In-law, two nieces & a nephew as family. He could not understand how they treated me. After a few yrs of marriage I cut all ties to my family. I have been happier for it. I think I am ready to try again. I think now I am ready to be my own person. Not to try to be what they want. Take me as I am or leave.
I also realized I am still emotional about having MS. I saw my OT & the guy from the place I got my chair. Talking about what was happening I started to cry. It is hard to talk about how you are losing function. And when you are talking about what you need from a chair & why talking in detail about how bad you really are. I am trying not to dwell on it. Worrying about it will not help. Live each day one at a time.
Replies
I don\'t know anything about chemo treatments for MS Kayce, but it sounds like you have a very aggressive MS doctor which is a great thing. Talk to him about your concerns and come to terms with your medications. I\'m just sorry to hear you haven\'t been doing so well the past couple of weeks. This is such a fucked up disease. Sorry, I know no other word for it. My heart goes out to you. Sometimes you have to stop worrying, wondering, and doubting. Have faith that things will work out, maybe not how you planned, but just how it\'s meant to be.
I\'m sooooo glad to hear about Bruce. I hope he continues to monitor this fluid around his heart and he continues to get better.
Your father probably still does not understand your health problems. I hope for you sake that he comes for a visit. You can pick your friends, but not your family. Bruce is looking out for you, not wanting to see these people who are your family hurt you. That\'s understandable. Hopefully you can start anew with your father and develop a relationship with him between now and the time he visits. You are also a mature women now, fully able to be yourself and not be affected by your family should they not accept you for what you are. I found that as I grew older I didn\'t care much what my in-laws thought of me anymore. I knew in my heart of hearts that my husband and I were happy with each other and that is all that matters. All that should matter to you is Bruce as he is your family now. What you develop with your dad is just extra. It is very disappointing when people stop being who you thought they were but equally as disappointing when they continue to be the same person that you hoped they wouldn\'t be.
Yes, talking about your failing health is scary and emotional. It\'s like verbalizing it makes it real and accepting. Something you may not be totally ready to do. Remember, you have MS but MS doesn\'t have you. You still have a life outside of MS and the MS doesn\'t define who you are. Stay strong lady. You don\'t have any choice really. Life is like a game of cards. The hand that is dealt you represents determination; the way you play it is free will.
You will remain in my thoughts. Lynne
I understand the part about family issues all too well. I have a sister who is a nurse and she has been so hateful and negative that I have had to cut ties with her. She knows how her actions could affect me but chooses to continue down that path so she will have to go without me.
Gentle hugs, Linda
G\'day Kayce,
good luck on the chemo and your dads visit.
I have a strained family relationship as well but rather with my mom, she can be rather over bearing, actually she could take me down in a fair fight. I don\'t think there are many families that don\'t struggle with one another, just some are more hurtful and toxic than others. You and Bruce are so lucky to have one another
I also agree with lyne ms is a f..... \"what she said\"
hope this finds you in high spirits
Hi Kayce,
So sorry that the MS is not staying under control but you my dear have a wonderful attitude and such strength. I hope they can slow it down.
I totally get the family thing and yes it is hard. Just be careful when you start again for some families do not change and I would just hate to see such a wonderful heart broke.....but on the other hand I hope that your family now sees, understands, and will be there for you. We don\'t need pity we need to draw strength from them.
I will be praying hard for you my dear friend. You are such a fighter and you deserve the best of everything.
XOXO
Dee