Really, really depressed
 

Got thru my b'day though 49 brought with it the reality of some day in the not too distant future being totally alone, mom turns 80 tomorrow & is in ill health - don't know what will happen to me when she passes.

Mom had a tile floor installed in my room on Saturday, easier with the walker & wheelchair. My service dog weighs 11 pounds & due to the fact I cannot always walk her she has been paper trained as an alternative. But after the new tile floor was put down Esperanza decided mom's living room rug made a better bathroom than her pad on the tile floor. Now mom won't let her out of my room unless I am taking her OUTSIDE she cannot go with me to the kitchen, dining room etc. She is very attached to me so I cannot leave her alone long without her barking.

I RARELY leave the house; no place to go & no money to get there, have not been out of the house since Monday. I have been trying to put things away that were moved to put the floor down. With mom's new rule concerning the dog Esperanza & I are basically in my room 24/7 (I leave occassionally for a few minutes at a time she never leaves). This is accomplishing NOTHING. Esperanza & I are just getting more & more depressed. I cry all the time. Esperanza no longer plays with her toys & once a loving cuddly dog she no longer wants me to love & hug her. She has gone from a fun dog that loved life no matter what to be as depressed as I am which is pretty bad. Esperanza has so often been my only reason for living I really do not want to give her up but told my mom tonight that after the holidays I am going to start talking to people I know & see if anyone can give her a good home. She is my life but it seems that love is not enough.

On top oof all of this found out I am losing my home care next week. YES I AM STILL ELIGIBLE BUT PEOPLE SUCK! Medicaid said they sent me a form which I did not receive they REFUSE to deal with my neurologist because his staff is IMPOSSIBLE. I won't make an appointment with him because his staff is IMPOSSIBLE (looking for a new neurologist). Another agency I deal with AGREED to call neurologist & try to intervene. The office told him that I WITHDREW MY RECORDS FROM THE OFFICE & FIRED THE NEUROLOGIST AS MY PHYSICIAN. I NEVER DID THIS! The last conversation I had with them I called on a Monday afternoon after the doctor left & wanted to leave a message. They REFUSED to take a message saying that I had to call back the next day JUST TO LEAVE A MESSAGE - I told them this was RIDICULOUS & in almost 50 years of seeing doctors NEVER heard of such a thing - have had NO CONTACT with doctor or office since. I called the office to find out what was going on they REFUSED to let me speak to the Office Manager or the doctor. My GP WILL fill out the paperwork BUT he needs the last paperwork (517) for home care & a blank form. Medicaid REFUSES to cooperate so that I can get these things BEFORE the date of service cut off December 16. Once my home care is DISCONTINUED it is a whole rigamorole to get it reinstated so I AM SCREWED!

Between being confined to my room, fear of aging, fear of losing my best friend (Esperanza) & now the home care/ neurologist mess & the MS getting worse seeming by the day I JUST CAN'T COPE.

How do you hold on when you feel there is no reason to hold on?

I'm so sorry you're dealing with all this. Finding a way to hold on isn't always easy. Reasons are different for everyone. Are you going to be able to see a different neuro soon? The living arrangement I can't really offer advise on, as we all have very deep reasons for wanting to stay where we're at, or for wanting to move. What do YOU want to do?
I hope things start to get better for you soon. You'll be in my thoughts :hug:...

hugs and prayers. :hug:

I hope you are able to talk to your mom, and your neuro about getting better care. it sucks to be dependant on others for stuff.

:Heart: (((((PEG))))) :smileypray:

Happy birthday to your Mom. I'm sure she's got alot on her mind, too, since she is also in ill health. Have you tried talking to her about how you feel? Maybe tell her what you expressed in your post (nicely)? Nothing will ever get resolved if nobody talks. I'm not sure what kind of medical issues your Mom has but remember you mentioning that she was driving around New York City......that's pretty impressive at 80! I couldn't do it now and I just turned 50! :o

I guess what I'm trying to say is that you both have valid concerns. Since you have time and it's not imperative that you find a place today maybe you could begin your search for housing so you won't be caught off guard when the time comes. Be proactive and take some control over your situation by doing what you can do now. I realize that there are some things out of your control but try concentrating on the things that you can do something about. That might help make you feel less anxious.

I hope things work out so that you can keep your dog. :hug:

Peg, you and Esperanza are in my thoughts and prayers :hug:
Happy birthday to you and your mom!
I couldn't say better what Kitty posted, so I'll just say "ditto" .
Thinking of you and your furry buddy
Linda

Was Espernanza used to her mat being on a carpet? Perhaps you can get a cheap area rug or pulled out rug from a renovation fofr free. My dog is aging anf often hesitates to enter the kitchen as sometimes he slips on linoleum ffloor so we lay down pool towels for him to walk to exit door on. Eventually we didn't ave to, but he may require it again tomorrow or the next.

Update
 

Someone from the MS Society has come in to help mom & I a few times as sort of a crisis intervention counselor. I contacted him & he is coming in the morning OH WAIT - IT IS MORNING. In the past when Gene has been here things settled down for a while so maybe that will work this time. Trying to have a few people for lunch on Sunday for mom's birthday but some of her friends have issues with me (things they don't fully understand because mom doesn't tell the whole story) so NO ONE is cooperating with this party - as of now ONLY 2 PEOPLE are coming. Whatever there issues are with me they need to grow up & honor my mom. Whatever! I'll repost after meeting with MS Society.

peg,

i really feel for you and what you're going thru.
i'm so glad that the counselor is coming to see you and your mom.
i agree with talking to your mom. see if you two and come up with a compromise.

i was going to suggest calling your MS society but you're way ahead of me.
try to think in problem solving mode.

don't give up peg. i think esperanza will come around as you can change her circumstances. keep us updated. we're here for you. :hug:

Peg,
 

I agree with what Kitty was saying about trying to take control of the things that you can.

I know when I become the most depressed it is because I am feeling completely out of control. So it makes sense what Kitty was saying.

Maybe if you can just pick one thing...no matter how small....and take control of it and see and feel the success in that, it will lift your spirits enough to put one foot in front of the other and move forward.....

You are in my thoughts and prayers and here are many caring :hug::hug::hug:

The good, the bad & the ugly - car accident
 

Gene from MS Society came this morning. Things went really well. So much of my problems with my mom lie with COMMUNICATION. We both assume a lot & DO NOT express fully what we need or want we just ASSUME the other person knows. We both felt good after Gene left & are once again taking positive steps forward. I am going to renroll in an anger management program which my mom will be a full partner in.

Have not been to 12 step program in months. Was contacted by a friend from the group saying a group I USE TO attend was having a holiday party today & she wanted me to come. I was hesitant but since I felt so much better after Gene left I decided to go. The party was nice & it was a good meeting. My wheelchair is finally repaired & I made arrangements to go after the party to pick up the wheelchair.

My van has had many problems since breaking down on the Wantagh Parkway a few weeks ago. After $800 in repairs the van has problems beyond the scope of any mechanic. Personally I think the van needs a good psychiatrist or better yet an EXOCIST. Lights DO NOT work when they should or come on when they shouldn't. Sometimes the radio works, sometimes it doesn't; the clock when it works does not show the right time, I will be driving an a "warning sound" (you know the annoying bong) will sound repeatedly but NOTHING is open & there is no way to shut it off & the best one sometimes when I go to remove the key from the ignition the vans "back up" alarm sounds the ONLY WAY to stop the alarm is to leave the key in the ignition. Good thing I live in a gated community because this OFTEN means leaving the key in the ignition overnight. Long story short 3 mechanics later I am no closer to resolving the problems. Well for several months the ABS light comes on. Again all mechanics say there is NO PROBLEM - don't know why it comes on. Usually the check engine light DOES NOT come on. The last time the CHECK ENGINE light came on the van broke down on the Wantagh Parkway.

This said I WAS NOT worried when the ABS light came on going to the meeting today or that it was still on when I went to leave the meeting. However, on the way to pick up the wheelchair the CHECK ENGINE light CAME ON. I started to panic & IMMEDIATELY changed direction & headed toward home. Mom wanted me to pick up a few groceries but I figured if I was in my neighborhood & broke down it was MUCH DIFFERENT than being where the wheelchair place was & breaking down.

I was about a block from my house (not yet at the grocery store) & the speed limit changes from 40 to 30. I went to put the brake on to slow down, I do the brake & gas with my right hand I started to press down on the brake & THE BRAKES LOCKED UP. I remember seeing a small car like a mini cooper to my right & knowing my huge van would CRUSH IT; so I jerked to the left (going straight at this point WAS NOT an option car WOULD NOT do that). Well there was a HUGE TRAFFIC SIGN I WAS HEADED RIGHT FOR IT & THE BRAKES WOULD NOT STOP THE VAN. I honestly thought that the sign was coming thru the windshield & took corrective action as best I could. I took out the llghts, part of the front & side of the van, jammed the drivers side door & side sliding door closed. IT IS A MESS!

I have a contracture in my left hand from the MS & use a wheel spinner that is essentially a "slot" that my 95% disabled left hand fits in allowing me to steer. When the van came to a stop BOTH my wrists really hurt; the left one from turning the van & the right one from trying to hit the brake. I COULD NOT get out of the van because the door was jammed shut.

A good samaritan who witnessed the accident came to my aide. He called the police but I REFUSED an ambulance. He kept asking me if I was ok because I was trembling from the shock & he said very pale. I asked him to stay with me until the police came & he did. The police kept insisting I go to the hospital & assured me Esperanza could go with me. Esperanza was not hurt because when in the van she rides in a doggy car seat in the back passenger seat & is strapped in with a 4 point harness. The police & tow truck driver got my door open. I have adaptive devices, a handle, a stool with a handle, a leg lifter to help me get in & out of the van. The tow truck driver said using these things he COULD get me in & out of his truck & take me home if that is what I wanted.THAT IS WHAT I WANTED.

Had some hydrocodone & took that but the pain in my left hand is getting worse. It is VERY SWOLLEN & ICE IS NOT BRINGING IT DOWN. My left pinky is bent inward from the contracture & I often straighten the fingers to exercise them but when I straightened my pinky this evening I THOUGHT I WOULD DIE!

Updating my meds, etc. (with one hand) going to print them out & if I feel this bad in morning going to have mom take me to ER. I am in so much pain.

Van was being towed to local tow place that repaired it last time but when I called wheelchair place to explain why I wasn't there they said DO NOT send van to local mechanic - send it to them. The LOCK UP in the brakes could be the brakes but it could be the hand controls in either case the hand controls could have been damaged in the accident. I was able to call the tow dispatcher & they changed where van was being sent.

Probably go to ER in morning won't know more about van until Monday.

There is a FUNNY SIDE to this story. The police & tow truck driver get the drivers door open then the rear sliding door on the drivers side so I can get my walker. I take my walker out & the police officer closes the door. My van is entitled "PEG'S GRAFETTI VAN" I have saying stickers all over the van. On the side of the door that was damaged were 2 stickers (well there are at least 20) but 2 in particular drew the policeman's attention; "I SUPPORT MEDICAL MARIJUANA & I VOTE" & "ARREST CRIMINALS NOT PATIENTS" with a huge marijuana leaf. The tow driver noted how my "design" got messed up in the accident, the policeman points to the 2 signs just mentioned & says "you don't have any of this MEDICINE on you or in the van do you?" I tried to keep a straight face & said "NO" which was in fact the truth I HAVE NOT smoked in almost 7 years but the day it becomes legal I will be first in line to get a medical marijuana card. When the tow truck driver was taking me home he was laughing about the policman & the stickers.

Need to get off the computer; I am use to typing with one hand but my right hand is also sore from the accident so I need to say good night. Wait for an update.

Oh, what a trip! I know you're hurting, but glad you didn't get badly injured. Maybe they can fix the van right this time (fingers crossed).
Glad everything else went so well today, though!

So sorry about the car accident and your hurt hand. I hope it's better by the morning but if not an ER visit would probably be in order at least for an x-ray. Hope there's nothing broken.

Gene sounds like a Godsend! I'm so glad he was able to help and get the communication ball rolling. :)

I am so happy that you and mom are communicating again.

Hugs and prayers :hug:

I'm back
 

Sorry I have not been around; my hand is hurting like well...

There is NO FRACTURE but possible ligament and/or tendon damage. The pain is so bad. I have to keep it in a brace 24/7 to prevent damage but do take it off to shower/ wash etc. This morning after my shower it swelled so bad & the pain was off the scale. Add this to the 24/7 neuropathic overall body pain that I have been experiencing & I am ready to put my head thru a wall. I am not scheduled to go back to the orthopedist for 3 weeks but a friend suggested I go to a noted hand specialist instead. Going to make an appointment on Monday. In addition to the damage from the accident I have the contracture from the MS so a hand doctor would probably be the best person to treat it not an orthopedist since there is not a fracture.

The van is a mess & tied up in petty childish nonsense. The van was towed to the same shop that failed to properly fix the van a month ago after I paid them almost $800. I tried to get it transferred to the mobility place but the first placed REFUSED sayiing that they had the van they were repairing it. I sent them an email saying they DID NOT have permission to touch the van. The mobility place then decided someone should do the body work before they worked on the hand controls & inspected them. The insurance company has their own body repair places. However when they called the company that had my van they were told that my van WAS NOT THERE! How come it was there a few days before? They finally admitted they had it when I said that if they didn't have it I was reporting it stolen & the police had a record that the van was towed to them & undriveable. Then they would not releae it until I sent them a written release. I faxed them a release 3 times & they still claimed they never received it. I faxed it to the new body shop once & they received it. The new body shop went to pick up the van after being told that the release was all they needed but THEY STILL WOULDN'T RELEASE THE VAN. Now they wanted a copy of my license & registration. After several attempts to fax these & them saying they DID NOT get it my mom finally went there personally with that information. Almost 2 weeks after the accident the van was finally sent to a body shop that could repair it. Now everything is tied up because of so many people being on vacation because of the holiday. I am told that it will be at least 3 to 6 weeks more before I can drive so it is not that I can drive the van it is just the fact that it is caught up in all this mishagosh. If I had the van my mom could drive it & that is easier for me to get in & out of than her car (a very small Intrepid). Relying on mom for rides does not always work out well either as she volunteers EVERYWHERE - at 80 YEARS OLD she still puts the Energizer Bunny to shame!

The MS continues to rear its ugly head thru all of this. The worst in when I get spasms in my injured hand & it is pulling against the brace. Then there is the fatigue. I use to "lose" about 1 day a month this was a day where NOTHING WOULD KEEP ME AWAKE. I take Nuvigil & I could take the medication, go back to sleep & sleep around the clock. This now occurs once or twice a week. It is so bad that the other day I went out for a blood test in the morning, came home ate lunch, fell asleep then proceeded to sleep thru 5 phone calls (very loud ringer with voice caller ID). My mom needed to reach me & came home worried that I might be hurt when she was still worried when she had trouble waking me but once she knew I was just in what has become known as my "comatose sleeps" she was FURIOUS. Does anyone else experience this?

On a similar note, my bio dad died before I was born but his sister told me that he too was a heavy sleeper. He once slept thru a house fire. The firemen carried him out of the house on his mattress (no easy feat he weighed over 450 lbs). He woke up on the lawn on his mattress & questioned what all the comotion was about. I was never like this I was always a light sleeper now I sleep irratically; a few hours here & a few hours there throughout a 24 hour period. I usually wake myself because I have to go to the bathroom or when I try to turn over (it is very difficult for me to turn over without assistive devices & when I am asleep I am not thinking of looking for them) but now 1 or 2 days a week I get these comatose sleeps & just cannot function.

Well that is all I can type for now with one hand but I am going to try to be around more - I miss you guys. :grouphug:

Wow, Peg, I'm impressed you got that much typed with ONE hand!! I can barely get half that with two! :o Well, one hand is numb so it's just along for the ride so to speak. :rolleyes:

Sounds like your Mom is really busy. Good for her! I hope I'm like that when I'm 80!

I know it's aggravating but try not to let the whole "van situation" get you all bent out of shape. That kind of bad stimuli will set off the MS sx quicker than anything. Use this time to get some much needed rest.

I'm sure my advice is not really helpful but I am glad you checked in and let us know you were okay. I know the everyday challenges seem overwhelming when we already have the MS to deal with....and now you have the injured hand. I do hope you feel better soon. :hug:

I am happy you are doing some better. :hug:

Have you heard of dragon naturally speaking? you put on a head set and it types for you! I love love love mine.

I only sleep very heavily if I am under anesthesia. other than that I will wake if you walk onto the pebbles on my driveway. I am very aware of my surroundings at all times. Maybe its a side effect of prison work for so many years. maybe its anxiety. I do manage to get ok sleep, but have to really work to stick to a scheudule.