I;m going to complain,, AGAIN

[navydad]

I am tired,, its December and it just seems like yesterday that I was watching my morning glorys bloom,, seeing the birds bringing there young to the feeder,,
I am tired,, I am tired of sitting in this dam house,, 7 days a week,, month after month, just me my Doxie and Cockatiel,, how many times can you just walk around the house,, how many times can you clean up around the hosue,
I am tired,, I am tired of being shoved from doctor to doctor,, and nothing ever seems to get solved,, or even diagnosed with something,, yet everything is there and they see it,,
I am tired of hearnig,, your a complexx case,, now I really dont think I;m the only person since man walked the earth to diplay these symtoms,,
I am tired of watching my marriage go down the toilet,, if my wife were younger,, I am sure she would have bailed about two years ago,,, I tell her,, I dont know why you just dont leave me,, what good am I,,
My sister was over today,, now I know they are having it hard right now,, and she wanted to BORROW 20 bucks,, I told her,, sure,, but your not going to borrow it,, your going to earn it,, I made her srub the area rug in the living room,, and scrub the carpet in my bedroom,, I dont mind paying for something,, I dont like just hadning things over,,
I am just tired,, in the months since Mayo,, my neuropathy has worsened,, but Mayos edict put the kabosh on me,, no more unecessary treatments,, no IVIG,, which I think was helping me,, but who am I,,, I;m just that folder on the shelf,, one of thousands,,,

Why couldnt I have something simple like erictile dysfunction,, oh wait,, (sigh),, ,,, now dont beat me up over that last one   

[Loon-Lover]

Navydad,

I wish I had the words to make you feel better. I have been reading your posts for sometime now. I too was told I'm a complex case before my DX.

My kids call once in awhile and say " Mom, you have any work you want done?" This means they need money. They know I will not just hand it over.

Your very lucky to have your wife, sometimes I wish I had a spouse to lean on. <<<-----literally!

Oh My Gosh! Christmas...still have shopping to do. dr. wants me to start using a cane. I don't know why, but I'm having a very hard time dealing with that, even

tho I know it would be so much better for my knee. Pride maybe? I don't know.

Here's to better days ahead!!!

Stay Strong!
~Laura~

[Dolly Dimples]

  Poor Navydad,  
                        Complain all you want here, someone is always here to listen to you.

                 Wish we could just do or say something that could help,

                    but we all know miracles dont come easy!

                    Hope your sis made a good job on the rugs..  
 
   
                   Also your poor wife is probably  more concerned than you think!
                        And I am not going to beat you up on your last statement.  Poor Guy!
                       Hoping you start to feel more easier soon.    Hugs Dolly x
                                                                       

[Shani]

Things really seem to be getting worse than better for you Navydad. 
Want me to get out my medical books and throw them at some 'doctors'?

Maybe it'll open their eyes...Yes you could be a complex case but however those are there to try and solve/help too.

[Catilee2]

Dear Navydad,

      We'll always listen. What's frustrating is we don't have the ability to change your circumstances. I feel so bad that Mayo took away the IvIg.  I had to postpone my appt. this month to next week and I am already wishing I hadn't needed to do that. So I can't imagine how you are bearing up right now. Before they started the IvIg in 2006, it would take days to recover from overdoing  tasks.  Now it takes time but not that much.
I pray that some healthcare professional has some bells and whistles go off in their brain to lead to positive treatment for your pain. Remember, Drs. are human and sometimes they do miss things and get things wrong.  I think your Mayo Drs, may not have been really listening to you!!! 
Good for you, making "borrowers earn the cash. 
Again, just remember, we'll listen. 
God Bless you.

Catilee 2

[Sha]

I am so ordering the people around you to not be " big red truck people!"

The more I read your posts, the more you sound like my twinzy! I will keep my fingers and eyeballs crossed the house gets less boring and you get someone who can figure out your "interesting case!"

Sha

[harlin]

Navydad,
I am so sorry. I wish you would go see my Rheumy. SHE REALLY CARES. She is so thorough that if you complain about one thing she immediately sends you to see someone else or sends you for tests. Blood work every 6 weeks and I see her every 7 weeks. She is really good. I don't know what part of PA you are in but it may be worth your drive.
Many, many hugs and prayers
harlin

[marycr]

What is IVIG? Wish I could help, I'm so new with this DX. I've seen every specialist except a Neuro.

[irish]

navydad, Well, we can sure tell it is winter. Everyone is getting cabin fever and it is only Dec. It is going to be a long winter I am afraid.

I would have loved seeing your sister do that work for the 20 bucks. I think it is good for her character. By the way, are they out of work???

Now, I have to ask---do you read?? Do you cook?? Do you do anything that will keep your mind occupied and stimulated?? There must be some card games on the internet that you can play with someone else in another state, etc. They have everything else must have that too. Do you listen to talk radio or any type of radio?? There are many ways to pass the time. Not what you want to do but better than sitting and stewing.

I realize that you are limited with your neuropathy, but I wonder if one can do a search on hobbies for physically impaired people. There just has to be things to do. Do you have any retired neighbors close by?? Must be some way to find someone to go for a ride with and get a cup of coffee. The depression of social deprivation is very real with us sickies. It gets lonely that is for sure. Also, when you don't work and socialize with others you tend to lose your self confidence. I really hate that aspect of being home. I sometimes wish we lived in town so I could at least sit outside in the summer and be more stimulated with just more traffic and people around.

Here is a site that I got from my new ISP. We live in the country and they came through a couple of years ago and dug in fiber optic cable for phone, internet and TV. We waited until our contracts ran out on the Dish and til the company ran a good special. I had dial up and 56K before and now with the fiber optic I have their slowest which is 768K. They go up to 50G I think it is. The installer put mine on 10G when he was hooking us up and you can't blink your eye it is so fast. I am back to the 768 and thrilled with it.

Anyway: http://www.earth.google.com        It lets you fly anywhere on Earth to view satellite imagery, maps, terrain, 3D buildings and even explore galaxies in the sky. I was on the google map a couple of years ago but sounds like they have really upgraded it. Irish

[navydad]

I do use google earth, its pretty cool to see different parts of the world close up,, gotta wonder how good some of the govt satelites are,, prob can see right through your roof

[kwolfsheimer]

Navy dad,

I like Google earth too.  I met the guy (virtually on-line) who runs that computer satallite system for Microsoft out of Colorodo.

I know what you mean about the depression.  I am changing-- I am becoming cynical and angry.  I got into an argument with a friend of mine yesterday and said some things-- I feel like I've been given truth serum because things come out of my mouth that I would have held back years ago.  She called me paranoid-- and she's probably right to a point.  i have become overly sensititve to things.  I overanalyze my doctors reactions to me.  I think I am so hardened from asking for help and feeling like nobody cares.

So, complain all you want on here-- as long as I can complain back.  We're all paranoid, hypochondriac whiners -- or so people think, or we think of ourselves.  I''m glad that I can read your posts and nod my head and feel like somebody out there is just like me.

As far as your wife... my husband and I went through a rocky patch right before I was diagnosed.  it was the sickness, not me, which was why I was withdrawing.  His understanding this disease and knowing  WHY I was feeling so badly helped our marriage.  I still feel like I'm a rock on the family dragging it down at times.  I'm not the best mom and I know that he shoulders a lot of my responsibilities.  "In sickness and in health"-- it works both ways.


Hang on to the positive. Sometimes we all need a pep talk!

[Reanne]

I agree kwolfsheimer.  I have reminded my husband many times that this disease doesn't get better, but worse as time passes.  He is more understanding than he was a few years back.  I think sometimes he thinks that I am a "paranoid, hypochondriac whiner".  I think all of us with this disease probably push ourselves to keep going.  People who haven't walked in our shoes doesn't realize what an effort it is sometimes just to get dressed in the morning.  Hang in there navydad.  I know we all keep saying that.  We all want to think better treatments are just around the corner. 

[gphx]

Good for you. Put her to work and kill two birds with one stone. I've been telling my family I keep getting weaker and weaker, not just legs but arms too. They don't seem to hear and keep suggesting jobs where people stand and move boxes all day. Today I made some instant mashed potatos. I poured some powder in, added water, and stirred. Just stirring a bowl my arm got tired like I'd been doing 50 lb. curls. You can tell people again and again but it's like they don't even hear you. Ever feel invisible? Have a good week. I'd say great but you know...