Hi. Sorry I don't come here that much. I take care of Alan and that uses up all my energy.

Anyway, I wanted to update you on what has happened. Especially today.

There is a medical building around the corner and they have a physical therapist/acupuncturist there. We went there, had an interview, the therapist started asking Alan questions (we had been given a medical form and Alan checked off all his illnesses and the guy went OMG, you have all these things?" And I said "Well, yes, but we are here mostly for neuropathy and if you can help THAT, that would be wonderful because he's had it for over 20 years and no one ever found out why and he has had all the tests, etc. etc." The guy looked at me and said this:

"Have you ever had a virus a long time ago?" I looked at Alan, he looked at me and I blurted out "Why yes, when he was 33 or so, he was hospitalized (in isolation, because they didn't know what he had), and ultimately he was diagnosed as having a Fever of Unknown Origin and was sent home (kind of like a mono thing) and he stayed home for 2 months until he got better and went back to work'. When I finished saying this, the guy said "Yup, that's the reason, the virus got into his body and damaged the peripheral nerves later on". I have often thought this but since no one actually knows, no one has ever said this to us UNTIL TODAY.

So I said "So years later, there was a trigger and he got neuropathy?" The guy said "In my honest opinion, yes". He also said "you have very bad genetics (when Alan told him what the other people in his family have"

He took him in the room, he attached electrodes to his back for over 30 minutes. Then he attached needles to the electrodes, and he also put needles in other parts of his body. Alan was in heaven. Then he did massage on Alan. More heaven. Then he had him on his back and I walked into the little cubicle to see Alan lying on his back with his back arched into the air. I never thought he could do that. He had Alan arch his back slowly 15 times. The guy then said: "He must do this 15 times in the morning and again at night" I said "you got it'. Then he bent his body like a pretzel and Alan was going OMG OMG. (The former chiropractor used to do this). made a world of difference. Then he told me Alan has to walk every day.

He told me 'Even if he says "I can't do this, I'm tired", you MUST get him up and walking and moving"

So, we walked 5 blocks total today. He came home and we both went to sleep. So we go back next Saturday because this all needs to get authorized by his insurance and that takes time and Thursday we go into NYC for the monthly Neuropathy support group meeting. I asked the guy "When all this gets approved, how many times must he come here for this?" The guy said: "Three times a week".

Oh, here is where it gets interesting. I was listening to the man asking Alan questions as he was putting in the needles and he asked Alan if his feet were hurting and Alan said "YES". Then whatever the man did with the needles (tweeking them or whatever it is that acupuncturists do!!!), Alan said "oh that's better"

So thank god it's around the corner. Tonight he did the arching of his body 15 times and went to bed at 9:30 because he was exhausted.

Just wanted to update all of you. Don't know what will happen from now on, but it's right around the corner, Alan doesn't have to take Access a ride or cabs there and he will be getting out a bit more. Alan now calls me his exercise nazi. I am also his food nazi but I don't care. He's losing a bit of weight and I will get him to do whatever the acupuncturist says he needs to do.

Just wanted to share and update you all.

Melody

Wishing you and Alan the best. Hope this will help. Any improvement is a good thing.

I agree. This morning he was doing his 15 arch back upwards exercise (without my having to tell him to do this and that in itself is a miracle). He also said "I feel a bit better". And I was up at 4:30 a.m. and noticed he was very still. He is NEVER still when he sleeps, his feet are always jumping and twitching. I had to take my portable light and I shined it on him to see if he was breathing. I kid you not. I have never seen him have an undisturbed sleep.

He feels the PT/Acupuncture is going to help him. So do I but it's going to take time. Just now he was in pain and is now napping.

So while (and I know this is just the beginning), I just hope that down the road he'll be in less pain, more active and able to do more stuff. For 14 years I have been the primary caregiver doing absolutely everything. And I have Osteoarthritis. It's all getting to me.

I know it's natural to get defensive and resentful but I'm at the point where all this giving and not getting is getting a bit much. I can't help him off the couch (even with him using the couch cane). my back can't take it and I told him.

Honestly, I think I'm just being used. It seems like that. He could never do anything like that for me. He admitted it.

I actually believe he would accept going to a nursing home and be taken care of. He has no idea what that would entail and that he would NOT be taken care of. He was in rehab for 6 weeks after his TURP (to get his muscles working better before being released). The nurses didn't do a darn thing. I had to help clean him, make his bed, believe me, it was not easy going back and forth with no help. Taking cabs every day.

And this guy thinks that if he lived in a nursing home, he'd do bingo and would be taken care of.

That's what the guy down the street from me thought also. He was 80 though, went from being a tough long shoreman to being a man who no longer could use his legs. He happily let himself be put in a nursing home. All he did was sleep, never called his wife. she would say "He doesn't seem to miss me, I don't know what to do". She was 20 years younger by the way.

Well, in less than a year, he died in that nursing home and now she's forced to move.

Anyway, thanks for listening. Sometimes it gets rather hard to be be doing everything.

I am now going to out and buy myself something. I mean, SOMEONE has to take care of me once in a while.

Melody

Oh, yes, Melody. It MUST be very difficult to give and give and give and never get anything in return, like a tad bit of gratitude.

Giving and giving isn't the hard part (if physically capable), but it is also such an emotional drain when your spouse seems to take you for granted when you keep pouring out care.

No one likes to feel like they are being "used". Many people gladly give and give with no expectations of anything in return, except maybe some gratitude. Just a simple THANK YOU goes a long way.

Has Alan always been so insensitive to your feelings?

Yes, you DO need to take care of YOURSELF, too. Alan is not the only person in this equation.

If Alan improves with the on-going acupuncture treatments, maybe he will be able to do a little more for himself, saving you physically and emotionally from extensive care giver role you have undertaken.

I hope YOU, too, will feel better as you go through the coming weeks.

Melody, read your story and HOPE things continue in a positive direction. So OFTEN others need to hear "what to do" from other experts. The acupuncture can really really help and a key is to do it often in the very beginning especially. I've done acupuncture over many yrs and could never go more than once a week and that is not ENOUGH. Too much is lost in the treatment in a 7 day or more lapse. I was going once a week to a clinic with lower fees but they moved and I can't or won't drive across town to these treatments. So with the help of other friends, I learned one can do self acupuncture at home...so I'm doing that and doing probably 3 sessions a week and mostly on my nasty OA knee. This area of healing is just another one that our country has failed us in helping people to improved health.

So good wishes to you both and YES do take care of you my dear. I can't imagine having to take care of another person at this point in my life...it's all I can do to take care of me. Even keep my plants watered. I have not followed your life with Alan so won't say more except to continue with the work and good thing the treatments are close by. And yes to keep moving and keep the blood circulating. Take Care. C

I wrote a complete answer to you and it all disappeared on me. lol.

So I'm going to re-write the shortened version.

You asked "Has Alan always been so insensitive to your feelings? "

Absolutely. He doesn't know any better. Talking and explaining goes nowhere.

My friend's husband is the exact same way.

Some men receive and don't know how to give. It's not in their nature.

And while, once in a while he does say thank you, it is not at all nearly enough for what I have done. I have literally saved his life by doing the Heimlich maneuver on him.

He calls me a nazi now because I make him go out and walk (he uses a walker). So between the P/T and acupuncture, here's hoping he can do a bit more by himself.

But I will NEVER do what I did last year. Sleep by his hospital bed, go back and forth in cabs every day. Completely drained me. I have to think of myself. Might sound selfish but actually I do not care anymore. Been doing this for 10 years now. My son took off 14 years ago and never looked back. He's a real piece of work. Nothing I can do about that either. I got professional help and I have lots of borders up. They will stay up.

If I don't try and find some joy in my everyday life, I might as well die. And I'm not dying for anybody.

Oh, and you'll love this, while he was in the hospital last year, one of his family members put this all on me. She said 'Well, you allow this, it's your fault". I carefully explained that for 8 or so years he had a recurring foot ulcer and I was instructed by his doctor to NEVER LET HIS FOOT TOUCH THE FLOOR." We had to work through crow boots and off loading shoes, and the correct orthotics, It took years to get it right and for the past 4 months or so, no more foot ulcer, but that took years. When I explained all this, this is what I got "Well, we don't know why you stood by him for so long".

So as you see, no support, no nothing. But I remember, oh boy, do I remember. I have an eidetic memory. I don't forget ANY conversation I have ever had with anybody. I remember all conversations, many tv shows, I can recite verbatim, most of the Star Trek episodes, and some movie dialogue. Impresses the heck out of people. Doesn't impress me anymore. I think it's all the Methyl B-12 that I take. But I do speak a few languages and that helps me a great deal if I go out and I meet people. I'm going to make you laugh.

This morning, neighbor was conversing with her brother in Italian. I am Italian but I speak other languages also.

She introduced me to her brother, I said (In Italian), now nice to meet you, my name is Melody. He looked at me as if to say "Wow, she speaks good Italian". My neighbor then laughed and said "She's International".

I laughed my head off.

See,we have to laugh every day or else we would die. And I'm not dying for anybody.

Melody

My mother stayed with my dad for 63 and saved him many times. My ex left me for another woman, good riddance as I see it years later...she had to take care of him. He's dead now. My daughter got very sick in a 17 yr marriage and she's working to piece her life back together and raise her 2 children...her ex is dead now too at 55... We all have stories... I won't die for anyone either. Just so so happy I never re-married. I knew better for my sanity. Take care. C

I year ya!!!!

Take care, Melody