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Originally Posted by Judy
Thank you everyone!! I know you're always there to "talk" with and give good advice and support. Yes, you're all correct in suggesting I could use some in-home help. My daughter has mentioned it a few times too, but that's just another thing to get my "head around". With so many things being taken away, I've found adjusting to one at a time is the best for me. Too many all at once is overwhelming.
I do think the first would be personal help (friends are great, but not for that) and help with meals. The friends I mentioned before are actually the two sisters around my age, that do cleaning, errands, etc, for me. Over the years, they've turned into really good friends. They work for other people too, so their time is limited.
There isn't a church family to help. Seems like I've had really bad luck with that. I was the choir director, played piano/organ in two churches for ten years, my "ex" and I were youth group leaders (teenagers), etc. When he and I separated, 21 years ago, my "so-called" friends and the powers that be, turned their backs on me even though there were no other people involved. I then went to the second church where people were very inviting. Then the MS got worse, most of the congregation were older folks and the whole church eventually folded and the building sold. Guess that's partly why I wonder what God's plan is for me having this. After all those years of serving Him......WHY?
Sorry, didn't mean to get carried away. As to the doctor situation, there are no MS clinics or specialists near here. The closest is Philadelpia which is a 3-1/2 hour drive. The neuro I had who retired, was the best for MS. Hopefully a new one or two will be brought in. I have spoken with an occupational therapist who was very helpful. Maybe she would have some suggestions.
Perhaps some PT too. My legs, feet and ankles are swollen all the time from lymph collecting there from immobility. 'Water pills' don't help that. Need to see my GP and someone to give me info on a s-p catheter. Reminds me of my mother who had a colostomy with rectal cancer. 
Thanks so much for all your good thoughts, prayers and hugs. Nothing can take the place of that personal touch.  |
Hi Judy - If you are on Medicare please see if you can find a caseworker. Mine arranged all the home care agency and self direct Personal assistants, financial payees to help with bill paying, hospital/medical etc, medication mgmt, scheduling of doctor visits and exams, and sees to it that I am receiving the proper care and respect I deserve (a great advocate), I love my therapist who greatly encourages me, psych for occassional depression with the fatigue, and now she has gotten my present neuro to back off my case and has me arranged to see specialists in MG and MS at univ hospital. Check out doctors bio online yourself. My trip to specialists will be a 3 1/2 trip each way too and I just found out yesterday that Medicare will arrange the lodging I need for 2 nites with meals plus the transportation of getting me there and back and a shuttle bus from motel!!! I did not know they would do that! Apparently if your doctor is more than 100 miles from your home and your doctor can explain why it is necessary for you to travel that far to see a doctor (like going to Mayo etc) Medicare will pay for travel, lodging and meals!!! They make all the arrangements (as you need) so I just told them to arrange everything (like a travel arranger) and they will be getting back in touch in a day or so. So dont let a few miles get in your way of getting help. And, as my caseworker kept telling me-I have the right to GO anywhere I need to get the help I need. Its out there folks-just get on the phone and find the right resources. I think calling a state agency would be my first line of action as they can best tell you what;s out there and avail for you from your own state. They even pay for the Personal assistant to travel with you so you dont have to do it on your own. Good luck and I hope God's blessings start to flow upon your sweet lap of exhaustion. I will admit I admire you and am almost ashamed of my own "whinings" as I dont have the pain on top of everything else and with the fatigue I dont know how I could tolerate daily constant pain. The urologist I saw the other day-excellent one- told me to try and go for as long as posssible before resorting to using catheters as the various catheters can increase UTI's. I know many use self catheterization and like this method. I simply keep myself on a 3-4 hour urination regimen and if I have a leakage it is rather small and manageable with pads. I have total loss of sensation and know what you mean but the 3 hour regimen has so far kept me from being seriously embarrassed as I am home most of days anyway. So, when I go for the doggie walks, I have to take the Mestinon 30 mins before walk (for MG) then potty, put on thick pad and go for nice long walk. Last year I went to PT and it made a dramatic change in my physical limitations, then I got the dog and began serious regimen of daily walking and I am so MIRACULOUSLY better!! I can hardly believe the imporvements-I was forever falling backwards as I tried to walk forward, muscles were hurting and spasming and aching etc. I believe in Montel Williams when he would constantly say-you MUST excersise to keep the beast at bay! It has even diminished the total collapses I would have with a flare up-at least this time go around. Much less severe fatigue-feet are back to barely lifting off ground and are sluffling along but I truly feel less debilitating fatigue. Keep moving but GET help for meals, housecleaning, shopping, errands etc. Stress plays a big factor in this disease and all these things will greatly help reduce your stress and fatigue. Rest is so essential to lessen severity of the muscular pain and fatigue. Let us know if you find your resources or Ill get online and phone and try to find them for you. Best of luck.