Chronic Progressive Illness, Not Always as It Appears

[Gabriella7]

Hi Chris,
I also have the rare type of MS labeled Progressive/Relapsing. I was the one who mentioned a supra pubic catheter as I have continuing UTI's and this will be the next step if it comes to that. At the moment the doctor has prescribed nitrofurantoin on a continuing basis.

Sorry, to have to say I'm glad your here just because of having the same type MS. Welcome back. We can compare notes.

Gabriella:angel:

[Chris119]

Hi Agate, good to see you here again. 2001! Who would've thunk, huh? Time flies when you're having fun, right? I believe in 2001, I was still going to school. I graduated in 2003.

In the six months before I got the suprapubic catheter, I was on daily Nitro. It worked quite well for me, since during that time I did not have one UTI. It is also one of the few antibiotics that doesn't completely shut down my bowels, so I was able to function on it. Like you, I did not want to get the catheter. However, my reason for needing the catheter was not neurogenic bladder, but being unable to fully empty my bladder. Intermittent catheterization was not really an option for me, so although I put it off for as long as possible, I finally had the procedure done. I admit there were times during the recovery process when I asked my urologist to please remind me why exactly I had this done? His reply: how does death sound to you? Well, since you put it like that… Let me know should you ever decide to go through with the procedure. I know it would've helped me if I'd been able to talk with someone who had this sort of catheter. Although no one wants to go through life with a bag of pee attached to them, I suppose worse can happen. There's definitely life post-catheter.

Chris

[Gabriella7]

Hi Chris,
My only experience with a catheter was a temporary one which lasted one month. I think the reason for it was I was not emptying at that time. Now I am emptying without any problem. The problem with the catheter was it caused me to bleed because it rubbed the sides of my bladder and caused clots.

I have a very small bladder and I think the size of the baloon was too large. It was put in by the MS nurse. I was also in a wheelchair at that time. Now I am walking with the aid of a cane most of the time. If it comes to surgery I'll be back in touch. I also asked my urologist about the botox procedure. He is not doing it and said I would not be a candidate as it causes one to retain urine which sets you up for more UTI's.

I remember you from 2001 as well. Time really does fly by.......

Gabriella:angel:

[Chris119]

Several years ago I had to externally strike my bladder in order to get it to fully empty. Then I had to have an emergency appendectomy, and I had a Foley catheter placed for that. Obviously when I was recovering from the appendectomy, I couldn't physically strike that area of my body. Because of that I was sent home with the Foley catheter in place. Well, it was a train wreck. During the next two months, I was at the emergency room four times. Finally I had them remove the Foley catheter, I went back to my old way of peeing, and I made arrangements to get the surgical procedure for the suprapubic catheter done. As I have said, it was a bit of a rough recovery – but I don't regret having it done.


Yes, I remember you too, Gabriella. I just didn't think you'd remember me! Glad to see you here again.

Chris

[Gabriella7]

Hi Chris, I remember you as you were so young. The Foley catheter is something I never want to have again. I can't remember if it was here that I mentioned the botox procedure but my urologist doesn't want me to have that done. It is not done around here and the only place I know it is done is in Maryland I believe.

I guess I'll keep using the Depends as long as they don't cause any additional problems. My bladder has shrunk so small it doesn't hold over a few ounces so I continue to leak all the time.

I joined a private board the last time BT crashed and just returned here a few months ago. I don't have the energy to post on more than one and sometimes read another MS board. I have also been diagnosed with Myasthenia Gravis this year so I am posting with one other person here on BT who has this rare disease.

The friends I once had when I could just drop everything and go out to lunch with them have drifted away and no longer even call. My husband is retired but goes out every day to shop or play golf. He can't stay in the house as I do for days on end. We do go out for a meal most days as I can't cook any longer but that is getting really to the point that it is too much trouble to get ready to go out.

Maybe crock pot cooking is next on the list of things to do.......

One other thing I forgot to mention is when I was taking an antibiotic on a daily basis about a year ago, all the bacteria got resistant to the oral medications and I had to go to the hospital for several days and have IV antibiotics. Another thing to cause worry with these resistant bugs.

Gabriella:angel:

[nuthatch]

Thank you Craig, Gabrialla, Chris, for being so candid. I have also been on BT for a number of years, but seldom post because most of those who do post appear to be doing so much better physically than I am. I only post when I have something to offer that might help someone else or just to give a hug or boost.
As for myself, I often feel alone and a complete failure, even though I know that everyone's MS is different, none of this is my fault, ect. ect. ect.
Reading your posts has made me feel not so alone and I thank you for that.
Joan

[SalpalSally]

Thank you Craig, Gabrialla, Chris, for being so candid. I have also been on BT for a number of years, but seldom post because most of those who do post appear to be doing so much better physically than I am. I only post when I have something to offer that might help someone else or just to give a hug or boost.
As for myself, I often feel alone and a complete failure, even though I know that everyone's MS is different, none of this is my fault, ect. ect. ect.
Reading your posts has made me feel not so alone and I thank you for that.
Joan

(((((Nuthatch)))))...I guess I'm in your boat, Joan. Please don't stop coming here, I need you a lot.

Love and hugs,

[Chris119]

Gabriella, you talk about friends drifting away. Remember, we live in a society based on speed and mobility. I have lost both. Because of this, I am now unable to go to people. It is so time-consuming for normally abled people to simply live, there is no time left over for coming to me. It is not their fault, it is not my fault. It is simply the way it is. In my normal life, I had a strong social network with what I believed contained very strong friendships. Most of those friends are gone now. But most relationships have a shelflife, anyway. Disability just makes them expire a little sooner. Unfortunately, once one of my relationships does expire, I don't have the social mobility required for forming a new relationship. I've learned that I never really understood loneliness until multiple sclerosis.

Joan, although I can't say I feel like a failure, I do understand the loneliness part. I don't think I have ever communicated with someone who, like me, has lost almost all independence. In American culture (which is the only culture I've ever lived within) almost all expressions of loss and grieving are frowned upon, and treated as whining and complaining. Expressions of the reality of my life, so outside the experience of almost everyone else I have encountered, are stigmatized as negative, or an attempt to by me to frighten newcomers to multiple sclerosis. I am not complaining. I've just learned to keep quiet. I hope I see you again here. Please know that you are not alone.

Chris

[Gabriella7]

Chris, You have spoken so well about our special needs. I told someone the other day my social calendar is filled up until the end of the year with doctor's appointments and tests. I do have two friends who also have MS that I can call and talk to as one of them is homebound and the other is not.

In my area I can go to the NMSS events and I plan to go this Saturday to a MS Expo which will be in Atlanta.

We can talk here on BT and there will be someone who will know what we are talking about so it is not quite so "lonely" a life. Even my church doesn't understand an issue such as "chronic illness". I have educated them this year. I asked to be placed on the prayer list when I was so sick back in April and had to be in the hospital.

After 6 weeks I was not on the list any more. I called and spoke with the Pastoral Care person and explained that I still wanted my church family's prayers and she told me it was policy to take people off this list after 6 weeks. Then I explained how a person with a "chronic illness" usually does not get well in 6 weeks and may never be better. I am still on the list and my husband goes to church on Sunday and tells me how people will come up to him after the service and tell him they are praying for me. In this church..... they are praying for my healing and I will certainly take it if it is to be.....

Gabriella:angel:

[SalpalSally]

Chris and Gabriella, You both speak very well for our plight with MS and I thank you so much..Hugs!!