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My Life Changing Kienbock Disease

$1,525 of $2,200 goal

Raised by 34 people in 13 months
My life is going to be changed forever. 

Where your kindness will be going...
- Stricting living expenses due to surgery being moved up... please see updates area for explaination.

I had NO IDEA how serious and life changing this disease is... not COULD BE... but actually is... until... today.

One of my subscribers on YouTube sent me a video of a woman who had just gone through surgery for Kienboch. Hers was a different surgery than what was suggested to me because of how far along her lunate was destroyed in her wrist. It was not her experience that made me realize how serious it was... it was what she was reiterating from what the doctors who specialize in this disease were saying. This is a life long disease that will just get worse over time. Depending on the person, if you are lucky... you will just have limited mobility after surgery (or many surgeries)... which I already have limited mobility NOW... if you are not so lucky... your wrist could end up being fused and rendered almost useless. Thus, this is something that CANNOT be ignored.

After what I heard her reiterate from these doctors, I have decided this is NOT something to experiment with... as it seems that all of these surgeries are literally just "hopeful" type, not the end all fix, as there is none... I am going to try to get into the Mayo Clinic in Phoenix as soon as I can to see a TRUE specialist that literally specializes in Kienbock. I am currently located in MO.

Backstory:
In March of 2017 I started having issues with my right wrist after a minor popping sound happened while driving. No accidents. No recent injuries. Nothing. I immediately had a small swollen area on the top of my wrist. Nothing major but it is still there today. The pain would flare up on and off but never completely went away. I ended up buying a brace, took anti-inflammatory over the counter medications; figuring it would take care of itself.

In June 2017 I started to have a consistent dull sharp pain, an odd pain that I had never really felt before. I finally decided to go to an Urgent Care just to get an X-Ray... they found nothing abnormal and simply said that it is probably carpal tunnel - to follow up with a primary care. My biggest concern was that I possibly had a break or fracture and since that was not the case... I went along with my life and never followed up with anyone. Mainly because, as before, the pain subsided a day or two later.  However, the pain continuously came and went. As time passed it was starting to get more intense.

In Sept 2017, I woke up in excruciating pain and my wrist was frozen in place. I tried heat and ice - which both caused it to be even more painful. The oddest thing, as I have played sports my entire life and minor injuries were not new to me. I ended up in the ER later in the day. Given the same diagnosis - even though my symptoms did not even match the condition - of carpal tunnel. Given some pain medication and discharged with a list of Orthopedic Surgeons. I did follow up this time... 3 weeks later, I sat in an office for 2 hours just to see a surgeon who said... "Well, I specialize more with knees than wrists." Even though he was listed as someone who dealt with hands. So I was given yet ANOTHER list of Orthopedic Surgeons...

So basically, everything up to this point was money flushed down the toilet. Money I did not have to flush. So... after all those wonderful experiences, I yet again, decided to wait it out.

In Feb 2018, almost a year later, the pain and swelling was still there. Some days so excruciating that I was unable to do ANYTHING. I finally broke down and made yet another appointment with an Orthopedic Surgeon who specialized in hands. This time, he actually matched his description. He took X-Rays, did not want to be definitive but said it could be something called Kienbock Disease. A VERY RARE condition. So he ordered an MRI - did a follow up and sure enough, he was right. To be honest, with doctors these days, I was rather impressed that he had the right diagnosis before the MRI... I digress. He suggested a Radial Shortening surgery in my arm. I own a business that I use my hands for entirely and this was busy season... so I said I would have to push it out to at least July. Not much else was said other than a follow up appointment made for June.

I will keep everyone up to date here as things progress...

My husband and I (including the doggies) could not be grateful enough for your help.

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Hey Everyone!

Had a check up today and it looks like the lunate bone that caused all this COULD collapse based on xrays... as it has gotten worse but the progress of negativity has slowed down exponentially.

Everything else looks good though, screws / fracture where they cut the bone.

I am doing quite well with function though so I was a little surprised to hear abt that lunate. Just need to baby it a little more.

Hope everyone is doing well! Thank you for prayers and generosity!

God bless!
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Hello Everyone!

Just wanted to do a quick update. My scar is healing well; unfortunately it looks like there will be a straight line through my tattoo that will look like there is no ink. However, I am VERY grateful they were able to line it up correctly!!!

Recovery is a little slower than I expected... I always have high expectations of myself though LOL! I have learned how to create most of my flowers with my left hand - so I was able to reopen my store about a little over a week ago! Bummer I am still unable to paint my orchids which is where about 80% of my sales are just because they are unique and obviously you cannot find them anyplace in the world. So still financially a bit rough. Trying to make as much as I can on new designs because we are about $300 in the hole with bills - Electric / Cable / Gas / Etc... mortgage is good to go though.

So things are coming along!!!

Thank you ALL for your help during the last few months, it has been a life saver - not sure how we would have been able to get through house bills during that time.

God Bless and everyone stay safe out there - heat is a killer these days!!! Have a wonderful, relaxing and enjoyable 4th of July as well :o)
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Hey Everyone!

My tattoo looks awesome and I am SO thankful!

UPDATE: I have been having massive muscle spasms the last couple of weeks that are EXTREMELY painful and last a few hours at a time. Had to see the Dr a couple times since they started. Another follow up is Wednesday. Xrays are looking good so far though! Not much healing has occurred... but that is expected. Just going to have to wait out the spasms.

I will continue to update as things move along!

I can barely move my wrist still and strength is so low I cannot open up one of those black paperclips... I was praying that this would be a little easier and actually thought it would be... just so I could get back to work. So I am not sure when I will be reopening my store. HOWEVER, a very creative subscriber from YouTube suggested a fly tying vice - it is for tying/making a type of fishing hook... lack of a better description... to hold boutonnieres. I purchased one for $20 - obviously a cheap one, was not even sure what I was looking at when I got it LOL - and it is a possible solution!!! I just need to stabilize the stem more and practice. Definitely a learning curve to say the least.

Thank you all for your help and generosity and anything you can help with in the future would be awesome as well... just got my medical bills in... ew.

Thank you all again - very much!
God Bless!
Tattoo as of 6/3/2018
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UPDATE!

Went to the doctor yesterday and he thinks it's a muscle spasm the has to do with my thumb. So he gave me a new brace to wear that holds the thumb in place... very uncomfy. Although I must say that their braces are really cool. They look really neat and they work really well. It's not something hideous or ugly that would be obnoxious to wear...

So I got some extra pain meds and muscle relaxers. Yay, more drugs. Ugh. They took x-rays, everything looked good so far. Nothing has changed with that lunate bone, thank God, and healing looks good at this point. The part that he sawed in half and took a small portion out of still has a good break in it but the screws look good. It's going to take 10 to 12 months to heal... I have no idea when I'm going to be able to open my business again and I'm going to be screwed here pretty soon.

The picture attached is a pain gel that I've been using for months, it is like gel vicodin... not literally... but it feels that way. You can only get it by prescription. So anyone out there that's having issues, any type of pain issue for that matter, I would suggest trying to get some of this from your doctor. It's a great alternative to having to take pills all the time. I'm starting to use it again where I can.

The stary strips are still on the suture line but he said I'm able to slowly take them off now. Once they're gone I'll show you guys a photo. I think it turned out really well. But we shall see what it really looks like... I must say I absolutely do love my doctor and trust him. Hes very kind and seems to know his stuff...

I'll keep everyone posted...

Thank you for all of your guys help during this time of need... I did not really realize it would be this big of a deal, so the generosity is MUCH needed...

Thank you all and God bless!
Pain Reliever Gel
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$1,525 of $2,200 goal

Raised by 34 people in 13 months
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RS
$50
Richard Sabo
10 months ago
$50
Mary Swoboda
11 months ago
MC
$25
Mark Crowder
11 months ago
S-
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S M -K
11 months ago
RB
$90
Ryan Bunn
11 months ago
$10
Raymond Kisner
11 months ago
TK
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Tony Kent
12 months ago
RS
$140
Richard Sabo
12 months ago
JS
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Johnny S
12 months ago
KB
$20
Kathleen Brady
12 months ago
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