Frustrated & Scared
It has been a rough couple of months. I was getting more MS symptoms a few months ago. In the past the chemo made the steroids work better & longer. I was able to stand & take a few steps. But then the steroids stopped working as well & I started to deteriorate. Had to stop standing b/c I was risking a fall. Now I am not strong enough to stand. I kept getting worse so we decided to go ahead with the chemo. We were hoping that once again the chemo would make the steroids work better & I would have a good summer being active. I would need to take the high dose treatment every month. I also have degenerating disk disease. My L3 & L4 & C3 disks are 90% gone & what is left is prolapsed. My Doc thinks they are pinching nerves causing some of my symptoms. So I am not getting the great effect from them as I once did.
This last bit I have gained allot of weight (I am huge) I have a ton of fluid on my bod as well. My feet massive. I have "moon face" that happens when you have too much steroids in your system. They have had to increase my heart pills as my heart condition (irregular heart beat) has gotten worse caused from the steroids. I am a type 1 diabetic my sugars are out of control, the steroids has done this as well. I have gain weight. My liver & kidneys are stressed after I take the steroids. So with all of the down sides & not too many gains My doc & I have decided not to take the steroids less my breathing is effected. So in a few weeks to few months I will be paralyzed once again. It is slowly happening now. The numbness is getting worse & my bowel issues are increasing. I can not expel the feces. I have had to dis-impact myself for 8 years now. I have been able to push some but that is not happening now. Soon the only way I will be able to "go" is with a "big bag enema" Not looking forward to that.
I am going to need to ask for support. It is hard for me to do that. But I know I can not just turn in. I am doing good going to the groups here. Being around people.
One thing that is hard for me is the amount of friends I am losing. 5 people who were my friends (here at the hospital) have passed away since I have come here. It saddens me. I tell myself that they are no longer hurting, that their suffering is over. Thinking this & focusing on the good times we had together helps me to get through my day. I asked one of my friends here how does she deals with it & she told me she does not let people in too much (but she let me in). I do not want to do this. She spends allot of time alone In some ways I think that could be more painful in the long run.
I found a new "joy". Last week I went down to the caf to visit with my Hubby there was a woman down there doing counted cross stitch. I used to do it as well, I just forgot about it. I get joy from doing it. It makes me satisfied to do it. I had my Hubby go to the store to pick me up a kit. It was a beginners one but I enjoyed making it. So I bought one off of the net. It should be here in a week or two. Doing the cross stitch is good for my brain, hands,enjoyment, plus I get a pretty picture out of the deal.
At the hospital I live at they have a raffle every month. People buy the tickets and the money goes to the patients needs fund. I was thinking of doing a cross stitch for them. If they could pay for the materials I would donate the time of doing it. I am going to ask my counselor about it. See if she could look into it for me.
I had to take some time off from doing the phone lines as SAC. I can not stay up at times, & thinking can be a problem sometimes.
This last bit I have gained allot of weight (I am huge) I have a ton of fluid on my bod as well. My feet massive. I have "moon face" that happens when you have too much steroids in your system. They have had to increase my heart pills as my heart condition (irregular heart beat) has gotten worse caused from the steroids. I am a type 1 diabetic my sugars are out of control, the steroids has done this as well. I have gain weight. My liver & kidneys are stressed after I take the steroids. So with all of the down sides & not too many gains My doc & I have decided not to take the steroids less my breathing is effected. So in a few weeks to few months I will be paralyzed once again. It is slowly happening now. The numbness is getting worse & my bowel issues are increasing. I can not expel the feces. I have had to dis-impact myself for 8 years now. I have been able to push some but that is not happening now. Soon the only way I will be able to "go" is with a "big bag enema" Not looking forward to that.
I am going to need to ask for support. It is hard for me to do that. But I know I can not just turn in. I am doing good going to the groups here. Being around people.
One thing that is hard for me is the amount of friends I am losing. 5 people who were my friends (here at the hospital) have passed away since I have come here. It saddens me. I tell myself that they are no longer hurting, that their suffering is over. Thinking this & focusing on the good times we had together helps me to get through my day. I asked one of my friends here how does she deals with it & she told me she does not let people in too much (but she let me in). I do not want to do this. She spends allot of time alone In some ways I think that could be more painful in the long run.
I found a new "joy". Last week I went down to the caf to visit with my Hubby there was a woman down there doing counted cross stitch. I used to do it as well, I just forgot about it. I get joy from doing it. It makes me satisfied to do it. I had my Hubby go to the store to pick me up a kit. It was a beginners one but I enjoyed making it. So I bought one off of the net. It should be here in a week or two. Doing the cross stitch is good for my brain, hands,enjoyment, plus I get a pretty picture out of the deal.
At the hospital I live at they have a raffle every month. People buy the tickets and the money goes to the patients needs fund. I was thinking of doing a cross stitch for them. If they could pay for the materials I would donate the time of doing it. I am going to ask my counselor about it. See if she could look into it for me.
I had to take some time off from doing the phone lines as SAC. I can not stay up at times, & thinking can be a problem sometimes.
Replies
Great to hear from you. So so sorry you are taking a step backwards. I think often of you. hang in there, you have came this far, perhaps you will do a 360 and get stronger. You are always in my prayers. Have fun with the cross-stitching. XXOO