Learning to Cope
It has been a hard week, but I am coping. It is getting easier. The numbness is getting worse. My feet are always half way numb. So is my inner legs, groin, lower belly. In the last few days the numbness has gone up my chest again. I find it weird that I have feeling & movement in legs but my chest is so numb & once again I can't move my bottom ribs. Half of the time yesterday & today I could only breath with the top of my chest. I left a message for my doc telling him I thought I needed the steroids again. He came by this morning & agreed, I started them at supper, 500 mg 2x/day for 3 days. We also increased the fluid pills I take to try to take off some of the fluid I carry. It might be easier to move if some of it was gone. It is terrible how much weight I have put on in the last ten years. Even if they tell me it is from the pills I take & fluid it is hard to accept.
I was talking to my physiologist this week & I discovered why I have been so upset about the MS. It is not from being sick. I have been sick for a long time with other things. June 1990 I had a tumor taken off my right ovary. July same yr in hospital for asthma on IV steroids after a few days went into a GI bleed. A bad one, lost just over half of the blood in my body. The doc said I am sorry but we have to take you off of the steroids. The next day I could not breath so they said I am sorry but we have to start the steroids again. The next day a bad bleed once again half blood in my body gone. It went back & forth for 18 days. During this time I was told I was going to die over & over again. That did not upset me. I spent the next few yrs fighting ovarian cancer, sever asthma & GI bleeds any one could of killed me. I ended up with a radical hysterectomy at the age of 23, so I never had kids. During a 3 yr period I had 5 major surgeries. Next came diabetes & heart problems, then a bunch of smaller health problems. Most of them are now stable but we do have to keep our eye on them. When we were talking about how I handled them I discovered why I feel the way I do. It seems weird but during the time when told me I was "dying" (90-94) I felt betting physically then I do now. I was not as tired, I could still do what to do when I wanted. After the surgeries I had to take it easy for a few weeks but I knew I would be on my feet again. Over the last 10 yrs I have been reliant on others, slowly losing my indepents. The last almost 2 yrs I have not been able to do anything on my own. I think that is the hardest part for me. Not the illness but the limitations. I feel like I am a bother to people.
I am still waiting to see the MS doc. I need to talk to him about the chemotherapy. I was told it was good at reducing the swelling of the lesions, reducing the size of them. That reduces the symptoms. I want to ask him how many doses does that take. I also want to talk to him about the dose. Most patients with MS take 12 mg/M skin I am taking 8 mg/M skin, so I want to ask if we should increase the dose to the 12 mg/M skin. When I started it he said he did not want to overwhelm my system, lower my white cell count too far. He said he wanted to leave me with some of my imune system. My white cell count is 8 normal is 4-10 so it is well within normal range. I also want to ask about how much can we expect the lesion to shrink.
We are playing the waiting game. Hoping the chemo will shrink the lesion enough before the steroids stop working. Last sept the kept asking if I wanted to live on a vent. I was very upset about that. I have talked to a couple of people who told me some things that got me thinking. I was told I would have a wheel chair with a vent built into it. It could be steered by the headrest or through a straw. So I could still get around on my own. When I talked to the "team" (it has my doc, OT, PT, RT, pateral care, SW, nursing & a few others) they told me I would still go to rec groups. They are great. In the mornings when we do puzzles they help the ones who can not do it by them selves. I have seen them hold the puzzle for someone & the person point to a letter board once they knew what they spelled they filled out the puzzle for them. For euchre the have wooden card holders & people to help if needed. There is a quadriplegic here & he plays every time. They shuffle & deal the cards for him. Then they put his cards in the holder. During the game he tells them what cards he wants to play. He has a pc hooked up so he can use it on his own. So I could still have a life.
I was also talking to a psw who was getting me washed up for the day I told her what is going on. It is not a given I will need to go on a vent. But the steroids are waring off quicker & quicker, they will stop working all together soon. She told me I could still have a life after going on a vent. She mentioned about working on the crisis line all I needed was to be able to talk. She also asked if I could still take the chemo b/c they said I may need it for 2.5 yrs. She asked if the chemo needed time to shrink the lesion. She wanted to know if I ended up on a vent if the lesion shrunk could I come off of the vent & try to rehab as much as possible. It is an interesting thought.
In a way I am also feeling better at least emotionally. It is spring & warming up. The last 3 evenings I have gone out for a walk (OK wheel lol). Today I had an appointment on the way back I decided to wheel back here. I had to drive right by my apartment so I dropped in. Saw the Hubby & my doggy. It was good. It also makes me feel good to get to places on my own.
I like to be as independent as I can. I know I might have to have more help later so it helps to do what I can now. My hubby brought me a hose for the sick in my bathroom so I can wash my own hair. During my morning wash I wash my upper body & put on my cream. My Hubby bought a stand/cupboard on wheels & a kettle. On the stand I have my kettle, tea, herbal tea, coffee & some other things. Now I can make my own tea. I have a jug a water in my room & I fill it myself. Even when getting up I help to get the lift sling under me. I put on my own shoes & socks. It is amazing how much better you feel doing as much as you can. It is like you are telling the MS you are not giving up.
I also made a decision a little while ago. This is home. I do not think I will ever be good enough to go home. But that is not a bad thing the way I am thinking about it. As long as I was fighting to go home it was like I was running from here. Screaming I don't want to be here. It was stopping me from enjoying anything about here. Now that this is home my room is feeling more like my space not a hospital room. I am making changes to my room to make it more homey. I am enjoying myself. I am also making friends here we help each other.
I was talking to my physiologist this week & I discovered why I have been so upset about the MS. It is not from being sick. I have been sick for a long time with other things. June 1990 I had a tumor taken off my right ovary. July same yr in hospital for asthma on IV steroids after a few days went into a GI bleed. A bad one, lost just over half of the blood in my body. The doc said I am sorry but we have to take you off of the steroids. The next day I could not breath so they said I am sorry but we have to start the steroids again. The next day a bad bleed once again half blood in my body gone. It went back & forth for 18 days. During this time I was told I was going to die over & over again. That did not upset me. I spent the next few yrs fighting ovarian cancer, sever asthma & GI bleeds any one could of killed me. I ended up with a radical hysterectomy at the age of 23, so I never had kids. During a 3 yr period I had 5 major surgeries. Next came diabetes & heart problems, then a bunch of smaller health problems. Most of them are now stable but we do have to keep our eye on them. When we were talking about how I handled them I discovered why I feel the way I do. It seems weird but during the time when told me I was "dying" (90-94) I felt betting physically then I do now. I was not as tired, I could still do what to do when I wanted. After the surgeries I had to take it easy for a few weeks but I knew I would be on my feet again. Over the last 10 yrs I have been reliant on others, slowly losing my indepents. The last almost 2 yrs I have not been able to do anything on my own. I think that is the hardest part for me. Not the illness but the limitations. I feel like I am a bother to people.
I am still waiting to see the MS doc. I need to talk to him about the chemotherapy. I was told it was good at reducing the swelling of the lesions, reducing the size of them. That reduces the symptoms. I want to ask him how many doses does that take. I also want to talk to him about the dose. Most patients with MS take 12 mg/M skin I am taking 8 mg/M skin, so I want to ask if we should increase the dose to the 12 mg/M skin. When I started it he said he did not want to overwhelm my system, lower my white cell count too far. He said he wanted to leave me with some of my imune system. My white cell count is 8 normal is 4-10 so it is well within normal range. I also want to ask about how much can we expect the lesion to shrink.
We are playing the waiting game. Hoping the chemo will shrink the lesion enough before the steroids stop working. Last sept the kept asking if I wanted to live on a vent. I was very upset about that. I have talked to a couple of people who told me some things that got me thinking. I was told I would have a wheel chair with a vent built into it. It could be steered by the headrest or through a straw. So I could still get around on my own. When I talked to the "team" (it has my doc, OT, PT, RT, pateral care, SW, nursing & a few others) they told me I would still go to rec groups. They are great. In the mornings when we do puzzles they help the ones who can not do it by them selves. I have seen them hold the puzzle for someone & the person point to a letter board once they knew what they spelled they filled out the puzzle for them. For euchre the have wooden card holders & people to help if needed. There is a quadriplegic here & he plays every time. They shuffle & deal the cards for him. Then they put his cards in the holder. During the game he tells them what cards he wants to play. He has a pc hooked up so he can use it on his own. So I could still have a life.
I was also talking to a psw who was getting me washed up for the day I told her what is going on. It is not a given I will need to go on a vent. But the steroids are waring off quicker & quicker, they will stop working all together soon. She told me I could still have a life after going on a vent. She mentioned about working on the crisis line all I needed was to be able to talk. She also asked if I could still take the chemo b/c they said I may need it for 2.5 yrs. She asked if the chemo needed time to shrink the lesion. She wanted to know if I ended up on a vent if the lesion shrunk could I come off of the vent & try to rehab as much as possible. It is an interesting thought.
In a way I am also feeling better at least emotionally. It is spring & warming up. The last 3 evenings I have gone out for a walk (OK wheel lol). Today I had an appointment on the way back I decided to wheel back here. I had to drive right by my apartment so I dropped in. Saw the Hubby & my doggy. It was good. It also makes me feel good to get to places on my own.
I like to be as independent as I can. I know I might have to have more help later so it helps to do what I can now. My hubby brought me a hose for the sick in my bathroom so I can wash my own hair. During my morning wash I wash my upper body & put on my cream. My Hubby bought a stand/cupboard on wheels & a kettle. On the stand I have my kettle, tea, herbal tea, coffee & some other things. Now I can make my own tea. I have a jug a water in my room & I fill it myself. Even when getting up I help to get the lift sling under me. I put on my own shoes & socks. It is amazing how much better you feel doing as much as you can. It is like you are telling the MS you are not giving up.
I also made a decision a little while ago. This is home. I do not think I will ever be good enough to go home. But that is not a bad thing the way I am thinking about it. As long as I was fighting to go home it was like I was running from here. Screaming I don't want to be here. It was stopping me from enjoying anything about here. Now that this is home my room is feeling more like my space not a hospital room. I am making changes to my room to make it more homey. I am enjoying myself. I am also making friends here we help each other.
Replies
Oh Kayce, you have so much going on with your health. I particularly like your last paragraph where you describe how you are mentally handling everything that is going on around you. You remain a strong women through all the adversaries you have been through.
You mentioned being a bother to others and not being able to do much for yourself. Reading your journal it seems to me that you are doing a lot for yourself. I would like you to really think about how much you can do for yourself (wash your hair, get your own tea, wheel around town). I think you will be amazed at how much you can do for yourself. And on being a \"bother\" to others, NEVER. There are people in this world that just love love to help others. They do not look at you as a \"bother\". I\'m sure your husband doesn\'t look at you as a \"bother\" either. Sometimes I feel like a burden to my family, but then I just have to remember their love for me and know that in their hearts they don\'t mind doing for me. Keep on gaining some independence and you will feel better about this.
I\'m glad to hear that you are making your room your \"space\". Accommodating your needs while personalizing your space is a good thing. Acknowledging that you won\'t every probably go home is also a good thing for you. You have to be a realist and the sooner you accept your lot in life the better you will be mentally. I think you are almost there, if not already there.
On your shrinking lesions, I was on Tysabri for 15 infusion (just over a year) and I experienced shrinking lesions while on it. I\'ve been taken off of it now, and expect to go on Gilenya once the wash out period is over. Chemo seems like such an aggressive approach but one that I guess you need to take considering all of your other health issues going on. The numbness worries me for you. That must be stopped before it reaches your chest. Hopefully the steroids will stop this progression. Speaking of weight, my weight has also climbed since I\'ve done so many steroids for my asthma. Now I\'m diabetic and they don\'t put me on steroids. I now have to live through my asthma and MS symptoms without the help of steroids. Do you get insulin when you are on steroids to counter the rise in blood sugar? That was suggested to me so that I wouldn\'t have to live through the MS symptoms, but I haven\'t spoken to the doctor\'s about it. It\'s a thought for you.
I enjoy reading your journal entries so much. You are an inspiration to me and others, I\'m sure. Yes, Spring is here and time for renewed energies. I hope to hear from you soon. Take care, and lots of HUGS. Lynne
kayce, you are truly an amazing woman. you tell such an honest, open and compelling story that has not \"controlled.\" you.
i am lifted by your words of adjusting, and changing yourself and your surroundings to be as independent as possible...i think it is obvious that you are making a mark on the people around you and us all at the ds forum.
what i felt through your journals and what i try to remind myself of every day, is that we are all still the same person inside as we were before ms...thank you so much for putting your struggles out there to inspire us, for us to relate to sometimes, more importantly, to learn from...many hugs, connie
Thank you for sharing with all of us. You are a great teacher for the new ones to not give up and to make the best of whatever the future holds. We don\'t have to give up and let this disease walk all over us. We can still have a quality of life no matter what it deals us. It is our choice.
Gentle hugs and joined at the heart. Linda
Kayce, you are such an amazing and inspirational person. What you have been through and what you continue to go through shows me you without a doubt, are the strongest woman I know. I\'m so glad you have come to peace about possibly remaining in the hospital and not going home. I am praying for you that you keep that peace within you as much as you possibly can. You hang in there and remember you aren\'t alone, and even though it\'s cyberworld, we care about you as a member of our family! Hugs and prayers out to you!
Amy