lifewithkienbocksdisease

[lifewithkienbocksdisease]

Goodbye, Tumblr! I have moved.

I miss this “blog” I guess it can be called, but I unfortunately don’t miss tumblr. I haven’t posted here in a good while because I never got into the tumblr roll (is that considered a pun?) and I frankly didn’t see anyone ever reading this. I want to continue this “blog,” revive it, and overall start it back up... on Facebook.

Many have seen this, apparently, and I don’t expect that to continue, but I want this space back and on a platform I actually use. If anyone does see this - which is doubtable - or if anyone ever finds this... I’ve moved! “Life with Kienbock’s Disease” is the Facebook version. Go see me over there (if you want to, of course).

[lifewithkienbocksdisease]

Kienbock's and tattoos.

[lifewithkienbocksdisease]

Kienbock's and Tattoos

So, for those who are really seeking to "be a rebel" and get a tattoo, I'm the bearer of bad news... you cannot tattoo over the scar you get. My 24th birthday was somewhat recent, and I got a tattoo on that day. My tattoo is the second I have on that arm, and it is a simple "011," aka a stranger things reference. I got it less than half an inch from my scar, and my sister was wondering if I had plans to cover my scar since my left arm - the Kienbock's affected one - is going to be a sleeve; for those unaware of terms, the entire arm will be covered in tattoos. She then told me in the same breath it's not possible to tattoo over it and if I did it would have a chance of not staying. Thankfully I have zero plans to cover my scar with ink anyway; I like my scar. It will be less obvious, yes, but that's okay. You can try to tattoo over the scar you have, but you must realize it takes multiple sessions of being literally stabbed in the arm with either a single or multiple needles. And if you're like me and lost muscle mass, it just hurts more because now the area is boney, which is not a fun thing to tattoo on. Ribs, spines, and feet are notoriously known as the most painful areas in tattooing. I am not trying to bum people out, but I am saying let go of all the negativity one can have about a permanent scar. That scar is proof you went through a battle not everyone faces. It's also proof you're stronger than you think. Next month is my 4 year anniversary of my last surgery, and my scar fades more and more as the time goes by. I know how it feels to have a permanent reminder aesthetically and physically. I get the questions all the time, but I see it as educating those who are unaware and/or curious, it's not ugly. Annoying, yes, but if I could turn back time, I would not change a thing... okay, except holding a carton of eggs a good week after surgery one, but that's another story.

[lifewithkienbocksdisease]

BRACE for impact

I have had two surgeries because of my kienböck's disease. I don't recall these surgery names, but essentially my radius bone in my arm was shortened to relieve unbearable pressure it was putting on my lunate bone. Then, about a year and almost 4 months later I had my lunate bone - with the rest of that tier of bones - removed. Dying bone pain is now gone; yay! However, pain from having a bone sawed into pieces does still come, too; boo!!! For anyone with arthritis, you will know what this feels like on certain weather days or holding something cold for far too long. It just starts to hurt and when it does, it stinks! It is like kienböck's pain but less severe for those who don't know what it's like to have this pain. To paint a picture: have you ever broken an arm and been casted for a month at minimum? On cold weather days, for some people, you feel almost the same pain as when it was healing. But, being silly, little me... I did yard work without a brace on. I know there is such thing as rebuilding muscle with kienböck's after it is "cured", but I am used to babying my arm so much I can actually do many things one handed. However, I will give everyone with kienbock's a warning: NEVER EVER do strenuous activity without a brace. Pushing 3 days later my arm still hurts! All because I was a moron and lifted some dead tree branches that didn't with more than 5lbs! If I wore my brace that would've been cut to 1 day. Now I can't even hold this phone up to post!

[lifewithkienbocksdisease]

Well, I feel dumb now...

So, at age 18 I was diagnosed with kienböck’s disease, obviously. Recently I found out that, for the last 6 - almost 7 years - I’ve been saying it wrong 😂

Kienböck’s Disease is really pronounced “Keen beks” not “kin box”! I learned to say it incorrectly because my doctor said it this way (kin box), and - thinking he knew what he was talking about - I simply pronounced it wrong just like him. I’m also even told lunate sounds more like “Lunay”/“Luna” (thanks to my genes I have bad hearing, so I cannot fully tell which is being said).

I feel like an idiot now.

[lifewithkienbocksdisease]

Surgery scar funness, yay!!!

I’m sad I couldn’t have posted this on the 3 year mark of my last Kienbock’s surgery - my “I’m ‘cured’!” surgery - but this is my scar today. I got lucky and managed to capture it all (believe it or not, the very bottom, my stitch scarring, and the top age beginning to fade white, so it doesn’t always show up anymore).

[lifewithkienbocksdisease]

Life with Kienbock's and tattoos

[lifewithkienbocksdisease]

Tattoos and Kienbock's braces

So back on mother's day of this year I got a tattoo of Doug Bradley's signature (long story short: he's one of my favorite horror character actors so I got his signature tattooed on my arm). Now I've worn my brace from my old Kienbock's days to bed because below my first surgery I woke up and my arm was twisted and fully bent, something that's really painful if you have Kienbock's disease; ever since then I've worn my arm brace to bed (though I give myself a break on Wednesday because it drives me insane sometimes). Anyway, my arm brace lately has left these marks on my arm from the stockinette being pushed on my arm from the velcro straps. It got to the point that it left a semi permanent mark on my arm so I had to go a week without my brace; something that's both scary and kind of nice (but mostly scary), and within a week it went away but left my arm sore at the wrist. Now I don't know anyone with Kienbock's because it's a rare disease to have it in general, but if you have Kienbock's I study wasting your brace to bed but also be careful with it. Kienbock's isn't something to joke around with, even after your Kienbock's disease is fixed it can still hurt to have it. My disease was fixed by removing bones in my wrist, and because of the nerve damage I could get a tattoo and it barely hurt, in fact some of it I didn't even feel! When I had my first surgery my doctor modified my nerve so it made it less painful to have my Kienbock's, which I later had removed and thus fixed my disease and the levels of pain I had. But as a result I'll never be able to fully bend my wrist again, which I'm okay with.

[lifewithkienbocksdisease]

This is what my scar looks like now. The little squiggles ate from my stitches when I had my second surgery and they didn’t dissolve (I’d have to wear a cast, and if I got a cast I’d risk getting a really bad rash again). If you look closely you can see my original scar under my newer scar.

[lifewithkienbocksdisease]

What my arm looks like after a night of wearing my braces. The more red outcome is my newer brace without a stockinette, and the more pale arm is with my 4 year old "old brace" with a stockinette.

[lifewithkienbocksdisease]

Oh the joys of post-Kienbock's

So lately I’ve begun to notice my arm is killing me once again, to the point I need to wear a brace again during the day, and I have nothing wrong with my arm anymore. My Kienbock’s has been gone for over a year, and nothing is wrong so I can’t go to the doctor and say “my arm hurts, please help.” Because of my newer, 2 year old-ish brace (my “old” brace is a good 4 years old) brace I get this little blemish on my hand, and since I don’t wear sock things (my name for stockinettes) between my skin and brace I got a welt-like mark on this blemish as it looked like a capital “A” instead of a lowercase “o.” I put a stockinette on and it went away, but lately I’m noticing pain is coming back, but not in the same area of my former dying bone, but more where I had tendinitis, but it’s the bone instead of the tendon. Why me? :(

[lifewithkienbocksdisease]

I can do a push up... kind of!

So since my last surgery I have not been able to fully bend my wrist since my kienbock's bone, along with the rest of the tier of bones was removed. Because of this I was told I'll never be able to fully bend or rotate my wrist again, which I can live with since the pain it was causing was utterly horrible, so because of this I can't do a proper push up without having to use my fist instead. Since my sister and I have a trainer, we go to the gym every Monday night to train with him, and one of the last times we went he made me do push ups on a bar. I'm slanted against the bar and push up that way, and at first I thought I couldn't do it, but I could... kind of! Day = made :D

[lifewithkienbocksdisease]

You're supposed to help...

So I went to a rheumatologist to see why I have essentially body wide pain from my elbows to my ankles, and I had to get in those dreaded gowns where the back is completely open just to have blood taken and returning later for X-rays of my feet and arms. What were the results? "Oh nothing seems out of the normal, but consider the pain normal or due to your weight. Make sure to keep me in your back pocket if you need me!"

Yes, so half my pain, which is in no way affected by my weight, is the reason why I am in pain on a daily basis. Yeah, I promise I won't keep you in my back pocket >.>

[lifewithkienbocksdisease]

My scar has begun to fade without any fading stuff! Yet it’s still purple in the sun…

[lifewithkienbocksdisease]

Life...it gets worse.

So I haven’t made many posts on here, but sadly my kienbock’s has gone to a new, hellish level. I’ve begun to have pain similar to kienbock’s…throughout my body. This is technically not kienbock’s, but it sucks just as equally.

I went to a rheumatologist where I was gowned, poked, prodded, and x-rayed. My bones have gotten so sensitive that when the technician was poking my hips to a line with the machine, and while she barely poked my hip, it felt like I hit on something since it hurt for the remainder of the day. Then the doctor moved my arms to check for inflammation… My arms didn’t cease to hurt until today, two days later.

So fun being me…

[lifewithkienbocksdisease]

I don't mean to be rash, but...

I apologize for taking so long to make another post, life and doctor appointments have been filling up my time, especially since the end of this semester is coming and we're trying to find out what is wrong with my strange bone pain. To add the cherry on top I began taking a medicine that gave me a chickenpox-heat rash kind of skin reaction... this is like after my first surgery where I had a grotesque rash all over my arm... only this time it's more of a port wine skin stain-looking thing.

I will try to remember to make more posts but until my reaction heals don't be annoyed at my disappearance.

[lifewithkienbocksdisease]

Sonic... potential killer/thief and they don't even care!

Last night we decided to go to drive throughs and I made the mistake of choosing sonic. So we're in a little stop where you order from your car instead of the actual drive through and once we ordered my mom's card didn't work since the scan did nothing. So we're sitting and waiting for the person to come so they can take the card and scan it and while waiting this woman holding a rolled up something and basically begging everyone for a ride... to go down the street. When she asked us she just said "Can I get a ride?" Naturally we said no since she was some random person looking more suspicious than nice so she went to everyone else and I noticed each time she went tho someone else she had a new excuse. For us it was "please, I'm too scared to walk alone!" Then the woman next to us got "please, I'm pregnant and I don't want to walk alone!" Then the lady next to her got "please, I'm too pregnant and I'm scared you walk by myself!" Not suspicious at all! So we sat there waiting for food for literally 10 minutes while this psycho begged for rides and eventually wandered off by herself [yeah, you're so scared to walk by yourself...my ass] while everyone else received their food. So, naturally frustrated, we left and went to another sonic where in less than a minute we got our food but found out mom's card was denied and we were $4 short, so we tell the lady we had to pay with a card and money, which was against the rules so we took off two things. Then she comes back and told us her manager said we can have then for free dive they'd spoil in their kitchen. Astounded by the kindness we decided to give her the extra $3 that was taken off and we were amazed they did that and it was so generous. Although the generosity was insanely nice...yeah I'm but going to sonic again for a long while.