Re: canes, parking plaquards, etc

[Guest guest]

Tracie, I could not of said it better, it's hard to accept you need help, I get those stares when I get out of my car too, then because, I'm looking at them and not the where I'm going I sometimes

end up tripping,,  I'm very slow, and trip easily, keep my caneand wheelchair in my van, I have learned it is better to use them then not, and pay later.  I can not walk long distance, so if we do something that takes a lot of walking I use the wheelchair,

so I am not in pain the next day.  For my 50th birthday I bought myself a wheelchair, so I could go to a big Kay event that would take a lot of walking, was it hard using it, you bet, I told everyone I can do it myself, but no one let me, they all took turns

pushing me.  that was over a year ago, I was also able to go to Dallas because of the wheelchair, again I never was alone, I hadplenty of help.  In fact I have to share a funny story, I was waiting forthem to announce boarding at the airport, I was sitting with my

MK friends and Director, when an elderly man came to me andasked if I was on this flight, I said yes, and he grabbed my chair and said time to board, my Director said I will take care of her, and he said Nope, I need to do this, she again said, don't worry she's in good

hands, and he said NOPE, it's my job, so we had to pick up our stuff quickly and go, lol.  The other day I went up and down our basement stairs, we were having a football party and the basement has a projector screen, well the next day

I could hardly get up for church but did, came home and sleep 3 hours, and then was still in pain for the rest of the day.  I shouldn't of done the stairs.  But we all push on and try to do as much as we can! 

We are going to Calif. and my wheelchair goes, I know I can't in anyway shape or form walk Disneyland.MY husband is pretty good, but sometimes he says can't you just try, and I say why do you like seeing me in pain? and he says no.

I know I'm rattling but if it make sense, and helps then I guess it was worth it, lolBlessings, Marla

 

Matt,

It's a tough step to accept having to use a cane.  I bought one last year for Christmas, and like hers, it's a great stick in the corner by the birdcage.  Maybe I should make it a perch-- it'd definately get more use. 

The night and I went to the local artisans faire and I had decided I wanted a cane, he decided he had to " coach " me on size, using it, etc.  He was pissing me off so badly, that I wandered off to the other side of the building, got him distracted at another booth, went back, and talked privately to the guy selling the canes.  Again, came over and tried to " help. "   I seriously thought of beating him with the cane. 

I'm short, so we had to cut off the bottom of the one that fit my hand, and was light enough weight wise-- and even that turned out to be a battle. 

Then this spring, after fighting a collapsed lung for what I'm pretty sure has been a problem for almost a full year, I decided I needed a scooter.  It was a very difficult decision- for .  The rest of my family also fought me on the idea.  To them, I was giving up.  For me, it was also one of those decsions where I had to ask myself if I was " giving up " .  I had to go through the guilt and surrender that I had already experienced with the parking plaquard, the cane and now -- a scooter.

I called the scooter store, went through the hoops of paperwork to see if I'd qualify for Medicare to help subsidize the cost-- and then called my doc- set up an appt with her, and she wouldn't approve a " power chair. "   The scooter stores want to sell you a chair, instead of a scooter.  They don't tell you that if you don't qualify for a chair, that you may still qualify for a scooter- btw.

So, I figured I'd shop around, get some prices, and just figure it into our health spending acct.  It also meant that I had to wait until May when my husbands job starts their new fiscal year for the HSA they offer.  So, 5 months later, trying to use the scooters in the grocery stores (and they are rarely charged, or available), having to shop online instead of going to the mall, getting weaker and weaker because at that point, they still hadn't discovered that the respiratory infection was being influenced by a collapsed lung lobe, (it took 3 xrays until the angle finally showed what was wrong) and being frustrated, angry, exhausted, having to defend my choice to both my docs and my family, and actually going out and purchasing the scooter-- then doing the paperwork with the doc (I didn't realize how much documentation has to be done to get it covered by insurance-- and that Medicare actually requires the paperwork be done before you buy)

but finally, just this week, I got some of my money back for the chair.  (It has taken 5 months.)  We had to have an " in home assessment " to make sure I can use it inside, and also that I couldn't get around without it.  Medicare doesn't care that you've become housebound-- so you have to prove that you need it inside your home.  Since I desaturate (too much carbon dioxide in the lungs with exertion) so very quickly now-- with my sats dropping to 84% just going from one end of the house to the other-- it has become part of my daily life.

Each of these processes means one more thing that we have to surrender to-- first we have to ask for a parking plaquard.  That comes with the family saying-- What, you can't walk.... " and the doc saying, let's get you some physical therapy and see if we can get some weight off....  And it's humiliating. 

Then comes the cane-- and the family saying, man, you don't look that sick... The doc asking how the physical therapy went, and another lecture about your weight... And again, you have to defend your choice.  The neurologist states that your balance problems are probably due to the meds you're on-- and that " highball " or psychotic depression, and weight issues... and he's got the wrong chart pulled up on the computer and you're on meds and your wife's prostate exam came back normal-- and the idiot hasn't figure out that women don't have prostates-- and that he has the wrong chart...

Then comes the chair or scooter.  We put ourself through hell making that decision.  We know what we're going to hear-- (unless, of course, we have a loving, compassionate husband like you   )  and the rest of the family calls you at work and says- what is she thinking.  She's giving up, if she'd just lose the weight and get herself up and moving....

My point is this-- she has to decide she needs the cane.  She has to be tired enough and fed up enough with being house bound that she's willing to deal with that first time (and second and third) that she runs into a friend or family member and their " Honey, don't you think if you lost some weight and got out and exercised that this wouldn't be necessary? "   They'll even talk with her docs and ask if they think that she needs..... and some may actually answer that-- especially if it's her parents or sisters asking.  And they ask the one doc you haven't seen in a year and he doesn't have a clue about the changes, but thinks that if you got some exercise and lost some weight.....

So-- take the cane and put it in the car.  If she wants it, it'll be there.  If she needs to use the scooter- tell her that you are proud of her for allowing herself to use the tools.  If you see the nimrod that gives her the dirty looks because you parked in a disabled spot and she walked into the store unaided-- say to them, some disabilities are sure confusing, especially when the outside looks great!  Then walk away. 

Hold her when the tears of surrendering come, and let her know that she's still the toughest and most beautiful number you know-- even with all the challenges and the mountain she will climb each day, just to do the simple stuff. 

Go to the website www.butyoudontlooksick.com and www.invisibledisabiltiesadvocate.com  and order the booklet " But you don't look sick " and order copies.  Share them as appropriate.  Go to FSR-- www.stopsarcoidosis.org and order the brochures-- and send them to her docs and family and church family. 

Matt-- there are few men out there that are willing to fight for their spouses.  It's a hard place to be.  It isn't that our hubbies don't want to help-- they are just so into their world of trying to deal with all this-- and they too are " old school, exercise and lose weight " that they don't realize that we've already tried that- and it too failed.  So that holding thing-- add lots of deep breaths, snuggle on the couch next to her, and keep doing what you're doing!  We'd all love to have you on our side! 

Blessings,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis

Sent: Friday, September 25, 2009 4:43:28 PMSubject: Re: AN APOLOGY IF I SOUNDED FLIPPANT 

I truly understand the not being able to drive part.  is unable to drive and I am the wheels.  She looks forward to just going to the grocery with me.  however she often tires too quickly and then almost wishes she had stayed home.  The physical therapy people suggested a cane & or walker/ wheel chair but miss stubborn refused finally accepting the cane...which by the way is supporting a corner of the garage quite nicely at the moment. 

Any suggestions on how I can get her to understand that a cane would be most beneficail to her ability to be mobile.  I will keep you all in my prayersMatt

From: <grannylunatic@ yahoo.com>Subject: AN APOLOGY IF I SOUNDED FLIPPANT

To: Neurosarcoidosis@ yahoogroups. comDate: Friday, September 25, 2009, 2:11 AM

 

Tracie

Neither my daughter nor myself can drive.  I had to bus all the way back almost to my apartment and transfer to another bus when it was due.  I shopped before the other bus arrived and it was well past time to eat.  I'm not being as irresponsible as it sounds but I have been told the Cytoxin is not working and my 4th ventricle is closing.  Can you say coma? Sure you can! (in my best imitation of Mr. Rodgers) I am going to take care of myself as best I can but I'm going to enjoy what life I have left.  I'll take all the prayers I can get.  I pray for everyone in the group. I appreciate all the medical articles and info that you work so hard to get for us even though you aren't well yourself.  I enjoy the feeling of belonging.    

Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/

grannylunatic@ yahoo.com

[Guest guest]

Thanks for the good words. I noted that the cane came back from the garage over the weekend. I made no comment. So maybe she has decided it is best to use it at times. Will keep you all posted as to when it might become a towel rack again.Matt

From: <grannylunatic@ yahoo.com>Subject: AN APOLOGY IF I SOUNDED FLIPPANT

To: Neurosarcoidosis@ yahoogroups. comDate: Friday, September 25, 2009, 2:11 AM

Tracie

Neither my daughter nor myself can drive. I had to bus all the way back almost to my apartment and transfer to another bus when it was due. I shopped before the other bus arrived and it was well past time to eat. I'm not being as irresponsible as it sounds but I have been told the Cytoxin is not working and my 4th ventricle is closing. Can you say coma? Sure you can! (in my best imitation of Mr. Rodgers) I am going to take care of myself as best I can but I'm going to enjoy what life I have left. I'll take all the prayers I can get. I pray for everyone in the group. I appreciate all the medical articles and info that you work so hard to get for us even though you aren't well yourself. I enjoy the feeling of belonging.

Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/

grannylunatic@ yahoo.com

[Guest guest]

Thanks . We now have 2 canes at our disposal. One written as script form the doc for a 4 prong that we use here at home, when she isn't relegating it to the garage and a single peg cane that my brother in law a PT gave her. I try to get her to take at least the single peg cane with us when we go somewhere, just in case, but she is a stubborn woman. I think eventually she will require the wheelchair, but i know that she won't go down without a fight. I can't seem to get her to understand that these items are to help her and make her more independent.Matt

From: <grannylunatic@ yahoo.com>Subject: AN APOLOGY IF I SOUNDED FLIPPANTTo: Neurosarcoidosis@ yahoogroups. comDate: Friday, September 25, 2009, 2:11 AM

Tracie

Neither my daughter nor myself can drive. I had to bus all the way back almost to my apartment and transfer to another bus when it was due. I shopped before the other bus arrived and it was well past time to eat. I'm not being as irresponsible as it sounds but I have been told the Cytoxin is not working and my 4th ventricle is closing. Can you say coma? Sure you can! (in my best imitation of Mr. Rodgers) I am going to take care of myself as best I can but I'm going to enjoy what life I have left. I'll take all the prayers I can get. I pray for everyone in the group. I appreciate all the medical articles and info that you work so hard to get for us even though you aren't well yourself. I enjoy the feeling of belonging. Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@ yahoo.com

[Guest guest]

Good luck and prayers for you.

Jackie

AN APOLOGY IF I SOUNDED FLIPPANTTo: Neurosarcoidosis@ yahoogroups. comDate: Friday, September 25, 2009, 2:11 AM

Tracie

Neither my daughter nor myself can drive. I had to bus all the way back almost to my apartment and transfer to another bus when it was due. I shopped before the other bus arrived and it was well past time to eat. I'm not being as irresponsible as it sounds but I have been told the Cytoxin is not working and my 4th ventricle is closing. Can you say coma? Sure you can! (in my best imitation of Mr. Rodgers) I am going to take care of myself as best I can but I'm going to enjoy what life I have left. I'll take all the prayers I can get. I pray for everyone in the group. I appreciate all the medical articles and info that you work so hard to get for us even though you aren't well yourself. I enjoy the feeling of belonging. Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@ yahoo.com