BUDDIES!!!

Hi Everybody!

I hope all my readers are having a lovely week, and enjoying the awesome late summer/early fall weather. I haven't done anything special over the past two days but my recovery is progressing swimmingly. I am now able to practically walk unaided! Yup, you heard me right, I can walk a week and a day after hip surgery! I kinda need to hold on to wall or something sometimes, but still, I CAN WALK! The limp is hardly noticeable and it doesn't hurt at all. There is kinda a weird weak feeling in my hip, that's about it.

I cannot even begin to describe how blessed I am that my recovery is going the way it is. I've had my share of nightmarish recoveries. Up all night crying in pain, been there. Not being able to walk for year, done that. This recovery has been so freaking easy. My pain levels were a 3 AT THE WORST. I wasn't completely immobilized. I was able to sit down (I was slightly worried about that). It's been like a summer vacation with a little restricted mobility and staples in your butt!

I have to mention that this surgery has been completelyyyyyyyyy different than any other surgery I've had. Why? Because I've had so much support from my family and friends. I'm completely shocked at how many people wished me well on facebook, here, and in general. Friends told me to feel better (and sent sympathy cards). Some of my coworkers have even texted me get well wishes... how sweet is that! Even some of my relatives that had gotten "used to" my surgeries sent cards, many cards! I remember being 13 or 14, having a surgery and having so very people caring about me and how much that sucked. This is a complete 180 and it feels amazing!

Ain't it something how a little gesture like a card makes a difference? Now imagine what a slightly bigger gesture could do. Ya see the main reason I am hosting my Scentsy Fundraiser is to help kids who are about to walk in my shoes. The MHE Coalition does so many things for people with my disorder, one thing they do is send "Care Packages" to kids having surgery and their siblings. These packages are filled with toys, candy, all kinds of goodies. What a fantastic way to show a kid that's going through a hard time that there are people out there who do care for them, and that everything will get better.

Now, Scentsy makes a product called "Scentsy Buddies" which are stuffed animals filled with a selected scent. These guys are soft, cuddly, adorable, and soothing. They would make for a terrific addition to the care packages. I would absolutely love to buy a bunch of Scentsy Buddies and send them to kids all across the country who are recovering from surgeries. Do you want to help? You can donate a Scentsy Buddy too! How? Just contact me at crippies_corner@yahoo.com or kthayer.scentrep@gmail.com for information. You can even choose which animal and scent you want to send, or you can just leave it up to Crippie!

There's a super amazing special going on now that if you buy one Buddy YOU GET ONE FREE! We can double the amount of children we help for nothing! C'mon comrades WE CAN DO THIS!

Crippie's Tippie - If you know someone that's going through a tough time, let 'em know that you care. It means a helluva lot.

It's All Relatives

Yo!

I hope all my crippled comrades are having a good week thus far. I'm still rather tired and sore, but otherwise I'm good. Over the past two days I was finally able to spend time with the piggies. Maggie is still sad so I tried having VERY supervised play dates with members of the trio. First I brought out Nellie because she is usually beyond docile. Turns out Nellie hates Maggie, she bit her in the butt several times. Then I tried Mama Pig cause she's getting older, and older pigs generally don't care as much. It went better than Nellie's play date. As long as they weren't looking at each other they were civil, they even snuggled. Maybe I'll try to introduce her to the trio... it would take an insane amount of space and salad, but it could possibly work.

Moving on, here's a little question that was asked during Cripplefest. "How has being disabled effected your family?" Of course it had a huge effect on my immediate family and I'll probs go into greater detail about that one day, but interestingly enough a whoooooolllleeeeee mess of cripples had the same answer when it came to their extended families. Damn near everyone said "At first everyone was very supportive and helpful, but they stopped caring eventually." This was definitely true for me. When I had my first surgery with the massive complications, everyone and their mother sent me cards, cookies, etc. It meant a lot to my little 10 year old self to know that people cared about me. But as time went on I got fewer calls, fewer cards, everything. Most of my relatives stopped sending cards after my third surgery. It was very discouraging because while most of my relatives were numb to my pain, I most certainly was not. It felt like I was alone and everyone had forgotten about me. I was one of the lucky cripples because I have a handful of relatives that, ya know, actually sent cards and helped us out when needed. Seeing our support system fade has surely been rough, but as they were numb to me I am now numb to them. Come September I don't expect a lot of cards from my family, but that's ok, I don't need them. I know that they all still love me, they just have a funny way of showing it sometimes...

Crippie's Tippie - General rule of thumb, if someone you know is having surgery or some other really crappy thing, be nice and acknowledge it...whether it's a card, facebook post, whatever, just let 'em know that you care. 

Invisible Illness

Hello,

This week marks "Invisible Illness Week"! Invisible Illnesses, or as I like to call them "ninja illnesses" are illnesses that cannot be observed by the naked eye. To show my solidarity for ninja illnesses I completed a survey that I found on Invisible Illness Week's Website.

30 Things About My Invisible Illness You May Not Know-

1. The illness I live with is: Multiple Hereditary Exostoses 

2. I was diagnosed with it in the year: 1989

3. But I had symptoms since: 1989

4. The biggest adjustment I’ve had to make is: Having to use a cane to walk

5. Most people assume: I was in some form of car crash

6. The hardest part about mornings are: getting up, sometimes I'm in a lot of pain

7. My favorite medical TV show is: House... because IT'S NEVER LUPUS 

8. A gadget I couldn’t live without is: my computer, it connects me to the world when I physically cannot

9. The hardest part about nights are: trying to find a comfortable position

10. Each day I take __ pills & vitamins: 2-3 pills a day, 1-3 vitamins 

11. Regarding alternative treatments I: like to dapple in it occasionally, but most of them don't work for my issues

12. If I had to choose between an invisible illness or visible I would choose: invisible, so people I don't know would think I'm normal

13. Regarding working and career: work around your disability and do what you can do

14. People would be surprised to know: I can actually walk pretty fast when I have to

15. The hardest thing to accept about my new reality has been: This isn't a new reality for me, it's just reality

16. Something I never thought I could do with my illness that I did was: have perfect attendance in high school AND college... BOO YA

17. The commercials about my illness: Commercials? 

18. Something I really miss doing since I was diagnosed is: Again, not applicable 

19. It was really hard to have to give up: It's hard to give up my mobility

20. A new hobby I have taken up since my diagnosis is: not running

21. If I could have one day of feeling normal again I would: Dance, do gymnastics, physical stuff

22. My illness has taught me: That you have to deal with the hand you're dealt

23. Want to know a secret? One thing people say that gets under my skin is: "I feel so sorry for you" I really don't need your pity

24. But I love it when people: Ask me how I'm doing or congratulate me on something I did

25. My favorite motto, scripture, quote that gets me through tough times is: Rise & Fly

26. When someone is diagnosed I’d like to tell them: That everything will be okay

27. Something that has surprised me about living with an illness is: It gives you a clearer perspective on life

28. The nicest thing someone did for me when I wasn’t feeling well was: Sent me a facebook message saying get well soon

29. I’m involved with Invisible Illness Week because: To show that just because someone looks normal, you can't always assume that they are

30. The fact that you read this list makes me feel: Peachy Keen

Cripplefest!!!

Ohai Everybody!

In case you guys are wondering why I usually post at insane hours of the night...
a) I'm still on a college student sleep schedule
b) I think I do my best work at night... at least I like to think that
c) I'm usually in pain during the night and blogging helps distract me.
Choice "c" is the reason tonight. My hip freaking hurts. Apart from the feeling that a lead balloon is expanding in my hip socket (arthritis) me thinks that either a tendon or a ligament has caught somewhere in the hip joint (MHE). In other words, I'm in a lot of discomfort and pain right now. The pain meds I take should kick in soon, but in the meantime... OUCHIES!

However, I'm not going to let a little problem like acute pain get in the way of the awesome weekend I had. This weekend was CRIPPLEFEST, the day where me and some of my fellow cripple that have MHE get to hang out. While Cripplefest was small this year, only 4 cripples, we had a wide array of people. Even though we varied in ages from mid 50s to 10 years old and have only been in the same room with one another for maybe a few hours, we feel like family. My cripples and I had a dandy time competing in scar wars (I won), surgery wars (I won), asshole doctor awards (didn't win), and impressive tumor awards (didn't win... RIP Pointy). One of the other cripples and I had a dandy time discussing our hatred for high-heeled shoes (they royally hurt our ankles) and how flats need to be prettier. It really is fun to be able to talk with people who are in the same boat that you are. Cripplefest is probably the only day a year when I truly feel "normal".

A group of Crippie's Tippie's for fellow Crippies- If your doctor doesn't know about your disability... find another doctor. If your doctor knows about your disability but continues to screw up... find another doctor. If your doctor doesn't listen to you... say it with me everyone FIND ANOTHER DOCTOR!

How To Deal With Crap

Bonjour!

After two silly posts I figured I should do a serious one. I was asked a very difficult question yesterday by someone who's child has special needs. "How do you deal with being physically unable to do what you want to do?" I am fairly good at staying optimistic regardless of what is going on, but this has to be the hardest situation for me. My general outlook of "misfortune is temporary and everything will be alright in the end" really doesn't apply to something that is not temporary and will remain craptacular forever.

One of the hardest things about being a cripple is facing the reality that sometimes being a cripple holds you back. My disabilities have prevented me from going to various places, experiencing many "normal" moments, and have made aspects of my life very challenging. I'll admit there have been times when seeing pictures of people I know doing a variety of "normal" activities have made me cry. I try my best not to do that, simply because sitting and crying over someone's facebook picture accomplishes nothing. So here's what I do to deal with the crap.

1) Face the fact that life is not fair- The sooner you get over the "why me's" the better. There is no good reason for aspects of your life to suck, it just does. In some how, some way life sucks for everyone.

2) Accept the fact that the feeling of being held back will happen- Accepting it makes the feeling less harsh.

3) Make jokes about your situation- As one of my professors said "If ya don't laugh about it, you'll cry".

4) Find a proper outlet for your frustrations- I draw and paint to help me cope with the frustrations, soooo much better for you than crying over facebook photos.

A painting I made when I was 17, sums up some of my negative feelings.

5) Find people in similarly craptacular situations- You get the feeling you're not alone, support, and the ability to bitch about the situation to someone who knows what you are talking about.

I know it's hard, but we cannot let the occasional disappointment get the better of us. Don't let the negative aspects of your life outweigh the positives. I know we can do it.

Crippie's Tippie- Be thankful for anything and everything you can do, chances are there is someone out there who wishes they could do what you do.

You're Not Alone

Greetings

One question that I get asked every so often is "Do you feel alone?". When I was younger (around 10) the answer was "OH MY GOD YES". I was actually rather upset then, I thought I was the only person in New York to have what I have *sob*. Then a miraculous thing happened, the series of tubes that is "TEH INTERWEBZ" came into existence. The internet is, in my opinion, one of the greatest things to come along for the disabled community (I'll elaborate on this in a future post). Thanks to the internet, support groups became sooooooooooooooooo much easier to find and join. So I became in contact with serval people who had what I have. Suddenly I wasn't alone! We started having yearly parties at my house with about 20 to 50 people with my disorder there. It was awesome. I now know hundreds of people with my disability. Some of them are half-way around that world (CRIPPIE SHOUT OUT, Hi Norwegians! I can see that some of you have been looking at this blog!). Some of them are literally 15 minutes away (apparently I was very mis-informed about thinking I was the only person in NY with MHE). I talk to them on facebook, I see them every once in awhile. We help one another out and we are always there for each other.
So to answer the question, no, I don't feel alone. There are people all over the world that know what I am going through and I know what they are going through. I am not alone. Not of my fellow crippies are alone.

Crippie's Tippie- If you are a newly diagnosed crippie, support groups are a great place to find... well... support. They're great places in general for resources and advice for your specific disability, cause let's face it, no one knows about it more than the people who have it.


P.S. Happy Passover to my fellow Jews out there, Shalom!