scared alone in pain

[Sammantha]

Its been hard for awhile, but i cant do it at all. I woke this morning and my alarm to the left went off. I went to hit snooze with my right arm which requires a full swing.. i couldnt at all..... coupled with teenage boy serious issues i have lost my inner strength again. When my mom and stepdad found out what i had was progressive and not curable they barely come around, and most know my husband works out of town everyday but sat and sun. In November he will be doing a job in Connecticut and wont be here at all. Their psychiatrist who is mine feels i a smothering mom and their dad is disconnected...i have to stop badgering them, i cant make up for their dads absence. My husbands boss does not even pay more for doing these far away jobs and sends my husband because he is salary..money is such an issue my boys want to get a job...i keep telling them school is there job....plus the gas money for a few hours on the weekend would not equal out......they get mad but they are too young 12 and 15. I get my last disability check this month....Social security deemed me disabled from my previous job but because i am educated i can still work. Is anyone hiring an emotionally unstable person, who is losing muscle and cant work when spasms leave neck or legs unmovable? Wahh Wahhh....guess i just became part of those 47%. I keep fighting to all these places talking about my disabilities and in my mind i can only cope by ignoring it, so right now with my new review for disability its like trauma after trauma....Last weekend family visited and i had the best time, although my legs and hips kept me at snails pace... The only time it hurt me was when we left a festival and my kids were far ahead, my sis and brother in law holding hands far ahead, while my husband walked beside them..... They were talking having a good time and i tried hard to keep up, but eventually crowds walked around me and i could no longer see them. A block from the car my sis in law was like where is Sammantha? They stopped and all stared as i caught up...... now that may not seem sad but it was to me. I pray i get over this depressive hump as i have had others. I pray for all of you as well. Besides this forum i am all alone in this journey....i think of it as hell sometimes but i know it is a journey of lessons that i MUST overcome.

 

[Atsugi]

Personally, I'm proud of you for fighting this battle as well as you are. You really have a most difficult burden, yet you continue to function as well as you can. Talk to your husband and to your mom and your oldest boy, one at a time, one on one, to ensure they understand your feelings. Then get your doctor to adjust your meds. There's no need to have a deep depression added to the load you've got to carry.

 

[HelenL]

Sammantha, you are doing the best you can... I agree with Atsugi, to help YOU feel better. You are doing a great job of hanging in there and raising those boys of yous. Next time you go somewhere that requires a lot of walking, could you use a rollator walker? then you can sit down when you need to. I know its really hard to use them, believe me, that was hard for me, and I'm a lot older than you.

I don't think your sons are too young to get a job... as long as they keep their grades up. The younger one could help around your house or mow lawns, walk dogs/pet sit cats, etc. The older one could possibly get an afterschool or weekend job at a grocery store/restaurant, washing dishes, etc. –, assuming there's places near you. My daughter started working at a daycare center when she was still 15, helping the teachers a couple days a week (it was the one that she had attended!). They can't work a cash register until they're 16 in this state, and most chains want you to be 18. I'm assuming that they're already helping around the house with chores.

Could your docs write a letter to help with your disability claim? Hoping that you get that straightened out soon.

Hugs,

Helen

 

[Ms. Pie]

Sammantha, you are awesome! When are you going to retire sweets? It does sound rough. And it seems like your family doesn't realize just how rough. It's okay to show that you need help you know.
I've missed you!

 

[Katie C]

Sammantha... something to think about: your boys are old enough to understand what's going on, and old enough to feel unable to help. By letting them find some kind of part time work you'll be empowering them to feel part of the process. You may also find it helps their school work because they will have to learn to manage their time well. I know that it's always been true of my son that the busier he is the better he manages all facets of his life.

I also agree with Atsugi that it may be time to talk to the doc about a med adjustment.

 

[notme]

Hi

It may be time to hire an advocate to fight for the disability if you are unable to work...even if depression plays a part, it's also an allowed issue for disability.vthere are some good advocates, though they will take part of the check, sadly.

They haven't diagnosed you with ALS, but we all know that most places just won't hirempeople that have any obvious disability, though they are supposed to.

I'm 52 and had used a can for over 10 years, and now a rolling walker full time if not my electric scooter. Look at it as conserving energy, not as giving up.

Many fast-foods aces will hire 15year olds for up to 3-5 hours. You might consider letting the oldest work if he wants to. I let my daughter because she really wanted to so badly. She worked in a pizza place at 13.

If you had at one point won the social security, contact a social worker connected with a mental health counselor, they may well be able,to assist you in keeping your benefits. Will your doctor support your claim? Doesn't pseudo bulbar palsy affect your speech? Education aside. That would make eloyment difficult at best when combined with spastic issues as well. I know first hand its hard to fight when you're fighting depression as well. And it sounds like you really have no support at all other than your kids who can only do so much.

I wish I knew a magic answer. All I can offer is hugs. I ended up having to use a social worker and allowing my daughter to put me into an assisted living facility for six months to get my disability approved...but it was approved very quickly with the city social workers support. (I also had a college degree, but was unable to walk at all and had severe pain)

 

[vzandt]

Hi Sammantha. Yes..I agree. It sounds sad and it sounds lonely. Hugs to you.

 

[ltbeauti]

Hi Sam,
Sorry to hear of the recent depression. It is hard enough for PALS, but us bulbarians who have the added emotional stuff, it can be real tough at times.
I went through a REaL bad time a while back. I don't even know why. I have a supportive network here, but just happens sometimes.
I have pm'd you before. Please dont hesitate to message me about anything anytime.
I would concentrate on the disability thing right now. Push, don't give up and fight !

My thoughts and prayers are with ya

 

[notme]

That's right, doesn't your condition add the emotional issues as partmofmthe disease process? As horrible as that obviously is for you, it CAN help you in your fight for disability.

Can I suggest you contact STU at ALSGA to see if he might have some connections from his years of advocating for people?

I'd completely forgotten the emotional side to pseudo bulbar palsy. Hugs to you. You're much stronger than I am.

 

[Sammantha]

Thank you everyone, i truly believe this site saves lives and sanity......when i say all that to my husband by the second sentence he is of watching t.v. and my psychiatrist just looks at me in horror! The doctor was going to explain my disorder to my kids but found that they are having so many dificulties and other than myself they do not have a support system so we thought it was best not to go into specefics... I started choking at night and only on liquids during the day..and only if i do not concentrate on eating/drinking.... the other night i took a spoon full of ice cream then a swig of soda and ALL of it went down my windpipe! It went flying all over and i was on the ground coughing and choking and tears were running from my face, i could not speak because everytime i went to take a breathe i had stridor and then would cough real loud, i was not scared because i knew it was liquids and would eventually stop. WELL my 14yr old son who is in ROTC soon to be 15 came running from his room and i was on all fours, he threw his arms around me and tried to do the heimlich but was barely moving me because he did not want to hurt me, finally a few minutes later i caught my breathe and said COLE its only liquids i will be okay...he goes alright then went to his room.. I finally got over it, sat down with tears and snot running down my face and i was like ahhhhh boys i could use a hug! They were in their room by then! I was so proud of him. I am starting to :not stress: over certain things so i am not overbearing to my boys and it is helping a lot. My husband on the other hand could become everything i need and want, yet i could not stand him. My emotions are in TOTAL control..no mind over matter..the body cannot be tricked... Whether its crying, laughing, anger or gagging... I got off track again ANYWAYS the help i get on here is the best sympathy coupled with a kick in the butt! Oh and could you please tell me what (Can I suggest you contact STU at ALSGA) is? I am not familiar with these acroyms. Except ALS! This summer my son is getting a job.... he wants to....he wants his license too. AHHHHHHHHHH

 

[notme]

Stu is a name of the man who runs the ALS guardian angels, a non-profit that try's to help those with ALS. I think you might fall under his thing.

Are you sure you did not aspirate Amy of those liquids into your lungs? They can cause a nasty lung infection if they did. Be sure your kids know ONLY to do the Heimlich if you can not speak or cough or breathe.vthey can do harm, but really, they are all old enough to be told to stay in the room with you until you're safely on your feet again.

If you are choking easily, it seems clear you are not easily able to be out working anywhere. Can't your therapist or anyone help you keep your disability? Fight them!

It's entirely possible they have no idea what your diagnosis really means.

 

[notme]

Moderated, no surprise there

 

[momap53]

Sam, so sorry you're having such a rough time. Stu Milheiser is the backbone of the ALS Guardian Angels. They're on Facebook or you can contact him here on the forums. They have provided a great deal of help to many PALS and CALS. They even managed to get Di a loaner Power wheel chair to Hawaii.
Good luck, sweetie. You're never alone.

PS be sure to watch for signs of aspiration pneumonia since you are having trouble with liquids