My day

Degenerative

It's a sucky word isn't it? Means things don't get better, means instead of working harder & getting better you get to work that hard & if you're lucky you get to stay the same. Now, it's that a joyful thought? Woo hoo, bust your ass for status quo! Plus, it's not even guaranteed, you could work that hard every day & still go downhill. Well with all that can't you see why I signed up?

You may have noticed some sarcasm in that last paragraph. I hate knowing that this might be as good as it gets, that barring something real odd happening I'm not going to get "better". I hate that next month my doc & I will be discussing Social Security.

I just wish I knew where I'd be in 6 months or a year. How far down will I go? It's a bit like falling in to a hole & you can't see the bottm.

I wrote this the other day & for some reason didn't put it up, since I can't remember, I'm putting it up.

Crutches

So getting crutches has turned in to a saga. The supply place said they couldn't get lightweight crutches, I called around to a few places couldn't get anywhere as they are the only DME place in town that does crutches. Called my PT to see what ideas she had, she gave me a place to call, but they don't take any insurance (it's one of those you pay us & get reimbursed dealies), but that wouldn't work cause my insurance doesn't reimburse. So called her back again & she called the DME place in town & once she talked to them sudenly they can get in the crutches I need, but they said I had to pay whatever my insurance doesn't cover, I asked if they had any idea what that would be & they didn't know. Since my policy says I don't have a co-pay on DMEs I called my insurance to figure this out. Had like 3-4 calls & finally found out that have to have my doc submit the rx 1st, then they either approve or deny it, if they approve it then I go to the supply place & get it filled. They couldn't tell me if I'd have to pay anything or not til after it's approved. So on the 10th we decided I needed crutches, on the 18th we fitted me a pair, as of today (25th) it's yet to be submitted to the insurance. I am thinking it's going to be a while before we get anywhere on this & since I need light weight ones I think it's going to be denied & I'll have to appeal.

In the mean time I've called my dad to ask for a loan & have sold a bunch of my hair stuff to pay for a pair. I am going to get a pair from my insurance, but I can't go the next 6 to 8 to 12 weeks without them, it's just not an option. So that's the condensed version of the crutch saga thus far, I've left out how I ended up crying from being so frustrated & the headache I ended up with. Hopefully my next post on this saga will be that my insurance decided they'd love to cover them & I'll have them ASAP, but somehow I doubt that.

Weekend Weirdness

1.) When was your last visit to an emergency room? What happened?
Uh well that depends. Last time I went to the ER they sent me to urgent care since I was there for a migraine. I got to meet the ultimate asshole doc who thought I was just looking for pain meds. I found out from some nurses later that no one likes him & he treats everyone like that. The last time I was in the ER is for when my roommate had a router try to gnaw a few fingers off. It was so gross. I think I still have pics from it somewhere, but I'll spare you.

2.) Who do you look more like: Mom, dad or another relative?
Carbon copy of my mother. I'm a bit taller, wear glasses & my hair is a shade or two lighter, but other than that a carbon copy.

3.) What sounds annoy you?
People chewing can make me feel really rageful. A few of my sweet child's toys drive me up a wall.

4.) What are three movies could you(or have you) watch(ed) over and over and still love?
The Others
Nightmare Before Christmas
Night Mother

5.) Do you ever wish you were someone else?
Yeah. It's a game I play when I feel like total crap. It's part of my way that I distance myself from my pain. I also play what would I do if I won a million dollars. I also play who would I be if I was born 100% medically normal. It passes the time better than sreaming & crying would.

6.) What do you think of when you think of Paris?
Butter & cream. Really that's what pops in my head first.

7.) What'​ s the last sport​ing event​ you watch​ed?​
Uuuuuuhhhhhhhhhhhhhhhhhhh............................

8.) What do you think about sexual Role Playing?
Nice for rare variety, but not for everyday.

Potty Training & Discipline

No this isn't a post about those happening together, those are 2 different topics.

Potty Training is doing awesome, she'll even go by herself sometimes during the day as long as she knows I'm waiting at the bottom of the steps. She won't go by herself in the evening, but I think that's partly because she can't reach the light switch. I am going to get one of those dealie-bobs that makes it so she can. Other than nap & overnight she doesn't wear a diaper at all. she still won't poo in the potty & as much I can't wait for that day I won't rush her yet.

As for discipline I think as a parent we have an idea of how we want to discipline, but you won't know for sure til you know the temperament of your child. Right now we are tying the star system. I've got a dry erase board & when she does good stuff she gets a star when she does naughty stuff she looses one. If she makes her goal for the day she gets a treat at the end of the day. She also has one chore on there too that she needs to do (no stars for doing it). It's easy stuff like picking up a room of all her toys. The rewards for getting her goal of stars are little things like watching some tv before bed or painting or stuff like that.

Sorry I've Been So Quiet

I've been a bit out of sorts. I've been feeling a bit blah.

Let's see medical update, hmm can't recall where I left off. I went to the podiatrist, they left me waiting in the waiting room for 45min cause they didn't check me in correctly. Then they forgot to cast my feet so I have to go back on the 1st of Dec for that.

I have called 2x to set up my echo, but the main # doesn't know where to direct the call so they send me to x-ray, they don't do them at x-ray so they transfer me to the nurse line, no one answers the nurse line & I leave a message & don't get called back. So that's not done yet either.

P/T is going okish, she doesn't have anymore exercise to suggest for me so I am to keep working out on my own & I am going to apply for a Y membership & see if they will give me a "scholarship" for most all of it. The PT is going to be measuring me & whatnot next week for cuff crutches & a knee brace for my crappy knee. We'll wait on getting a brace for the other knee til after I get my orthotics to see if I still need one for that knee & to see if the one I get does work well.

Migraines are trying to destroy my soul. In the last 30 days I've had 4 separate migraines with one of them lasting 2 days. I am going to go see the neuro after the new year. I think there has got to be something else I can take, preferably with the neurontin since it does work so well on the other 2 types of migraines & on the neuropathy & as a nice tiny bit of mood stabilizer. Once I get to 600mg 3x per day I get my neuropathy flaring way up.

I think my OT sucks. He wants to make custom splints for my fingers. I'd rather he try Oval8s, he has size 4 as the smallest so they won't work for all my fingers. I don't get why he can't order smaller ones, I know they make kid ones. The custom splint he made for my middle finger on my right had doesn't really straighten my finger, but it does manage to hurt areas that it presses on that shouldn't be getting pressed one. I think I'm better off going to Mayo after the new year & seeing what they can do for my fingers, I'm not crazy gumby in my hands, but I need some help with them. I think the OT guy is just used to working with elderly arthritis people & I am way the hell out of his depth.

Weekend Weirdness

1. If you were in a situation where it was either starve to death or resort to cannibalism, would you resort to cannibalism to stay alive or let yourself starve?

Who am I there with & do I have to kill them first? I'd probably starve, but if I was there with Dalmer I'd be more willing to give it a try.

2. Do you know all of the words to the National Anthem and The Pledge of Allegiance?

If I'm singing it I can do 90-95% of the anthem, the pledge I've got down pat.

3. Do you consider yourself a leader or a follower?

Leader, 100%

4. What is your most favorite holiday? Why?

It used to be Halloween, but as I get older Xmas is becoming tied with it.

5. In what ways, if any, are you superstitious?

I don't like to walk under ladders, but that's more of a fear it would fall on me or someone up the ladder would drop something on me.

6. If you had to pick a creature from the Mythical Creatures Guide to be your pet, which would you choose and why?

Father Time, how sweet would it be to talk with him?

What was scampering about in my mind after reading a few other blogs

There are the are the stable disabled, the up & down disabled & the degenerative disabled & some mixes of those. I am the degenerative disabled with a splash of up & down disabled for flavor.

I can only speak for myself & I am a total n00b in the disabled world I grant, but I think it's harder to get the rest of the world to understand the fact the up & down people are disabled. Some days I can't get my legs to bear weight, but most days I can but it's painful. I often don't know if I'm going to be able to do something as simple as snap my fingers until I try to do it which I can either not do it or I can do it & risk a dislocation. I am averaging 1 migraine a week right now & that's a huge improvement over how I was doing this summer. I am disabled by a few different things, but once in a while I get to go visit the land of AB for an hour or so, but I never know when those times will be so I can't even take advantage of them. Those trips suck though, it's hard for me to accept that I am disabled because of them & if I have trouble getting it thru my thick head how can I expect others to figure it out.

When you have an up & down condition you often put off going to the doctor which means you spend a while listening to others tell you to suck it up, you spend a while telling yourself that too. When you have a degenerative condition you start out pretty normal then slowly go down, since it's often a slow trip down you often don't even realize you've gone down hill until things are getting pretty crappy.

I don't know if there is a point really to this, but I read Drake's post & then Yanub's & they got my mind rolling & this is what was scampering about in there.

Because Rules Don't Apply To Me I Can Pretend It's Wednesday

I've decided to do a meme on the weekend, but as no one I know memes on a regular basis I went to the Daily Meme to peruse the selection. The one I liked? Wednesday Weirdness, but I'll be doing it on a Sat or Sun. Yeah, that's the kind of girl I am, the one who does a Wed meme on Sat, yehaw! I also thought a meme would be neat because it would show a more rounded view of who I am, I'm not just a internet gimp-star.

Wednesday Weirdness #27

1.) As an adult, do you do anything for Halloween or is it jut another day?
I used to every year. I think the last year I trick-or-treated for myself was when I was 18. As an adult I went to tons of Halloween parties, heck I was up for celebrating Halloween year round. The last 3-4 years I haven't done too much, Toad was tiny & had some nasty medical issues, so we didn't really do anything. We trick-or-treated at a few neighbors houses, but that was it. This year was the first year Toad really "got" Halloween & I think from here on out we shall be back in the swing of truly celebrating again.

2.) Do you ever dress up for Halloween? What will be your costume this year?
Yep, I have dressed up for every Halloween save 2-3 since I was born. This year I wore my usually Halloween gown. I'll have to get a pic of it. I wear it when I haven't had a chance to show for the year, but need a costume, then I just need to accessorize quick & I'm set.

3.) Have you started Christmas shopping yet? When do you usually begin?
Well after the holidays I usually buy paper, bows & that stuff. It gets expensive & I hate paying a ton for stuff that's just going to get tossed. I also am a bag saver, I save all the bags & use them again. So wrapping is all set.

My roommate's sister is just about done with for shopping. My mom's gift is 1/2 made, so that should be done soon. I will be doing the Black Friday thing & that is usually a chuck of my shopping. I know it seems crazy to go out, but I live in a smallish town so the crowds are light, if I can get a scooter I'll be set.

4.) Do you look people in the eye when talking? Does it bother you when people don't make eye contact during conversation?
Yes & yes.

5.) What excuse do you usually use when you want to take a day off work for no real reason?
When I worked I took so many days off for real reasons I almost never faked a day. I think once in a rare while I faked a migraine, but it wasn't common.

6.) How often, on average, do you find yourself thinking about sex per day?
Um not often anymore. I've been single for a few years.

7.) What company makes your favorite brand of shoes? What makes them your favorite?
Hmm, I don't know if I have an answer for that

8.) Do you ever save alcohol bottles once they are empty?
Do, stopped doing that when I was 20 or so.

9.) Do you enjoy musicals?
Some of them. If you promise not to tell anyone I'll let you know I love The Sound of Music & 7 Brides for 7 Brothers.