Braces!! :)

Today I went to ACH to OT to get fitted for hand braces. The appointment took over 2 hours and I have to go back on Monday to finish.

The OT measured:

• all three joints in each finger 4 ways: 
• how far I could bend
• how far I could straighten them
• how far she could manually bend them
• how far she could manually straighten them.
• how far I could touch my thumb to my palm 
• how far I could straighten my thumb
• how far I could trace my pinky with my thumb
• how far I could bend my wrist up
• how far I could bend my wrist down
• how far I could move my wrist to the left
• how far I could move it to the wrist
• the strength of each fist
• how well I could touch my head with each shoulder
• how well I could reach my thumb to the middle of my back
• how high I could reach my arm above my head from straight ahead of me
• how high I could reach my arm above my head from my side
• I think that is it.........

So it was a long and painful appointment to say the least. 

I found out some things that I didn't know--- Such as how I have significant loss of ROM in both shoulders by over 40 degrees, my left wrist can barely move as compared to my right which is weird because I thought my right was worse, and my middle fingers are the worst with manual manipulation but my index fingers are the hardest to move on my own.

BUT!!! I got one custom brace made. I go on Monday to have one made for my left wrist and to be fitted for manufactured braces for both hands to see which I prefer. 

These braces are to help straighten my fingers gradually and to ease pain. I am to wear them at night and at certain points throughout the day.

I also have ring braces for all fingers that I am supposed to wear when using them.

Custom hand brace for my right (worse) arm

Ring braces

No surgery because it will not fix what is wrong with my foot..... Now it's just another "wait and see" game

Monday

Meeting with the surgeon to figure out when this is all going down. It's far too early for this....

Summer Time/Surgery Time Same difference....

So yay! I survived another semester of college, but it's not all fun and games for me this summer. Taking online classes Summer A so that i can be at home to have surgery.

About 3 weeks ago, i noticed that my foot was swollen. It didn't bother me too much, but it takes a lot for my body to swell due to all of the medications I have been on for so long. Even when I break bones, I typically don't swell. Since it wasn't bothering me though, I didn't feel the need to go to the doctor (chalking it up to arthritis or something, knowing there is nothing to be done for that and even more so the doctors at school would not be able to even understand) but my parents kept telling me to go get it checked out.

I eventually gave in and went to the health center on campus. The doctor there checked me out and said that he didn't think it was a break, but sent me to the ER thinking that I had a blood clot. The foot in question is on the same side as my port so a blood clot on that side is no laughing matter. After x-rays and testing, the ER doctors said that I had torn ligaments  and a very slight chance of a stress fracture. I was told to ice it (which I can't do because of arthritis) and take advil (which I also can't do because of meds) and come back for more x-rays if it still bothered me in a week.

Since I had to go to infusion anyway, my parents set up an appointment with my orthopedic specialist at home. After examinations and x-rays, it was determined that I have a cyst eating away the bone in my foot. Since I am so used to pain, I didn't realize that it was there, and so it ha d progressed so much that I am now missing a rather large piece of bone. Because so much is missing, I have to have surgery to remove the cyst and a bone graft to regrow the bone. Because of my arthritis, the fact that my body does not heal due to my immune system, and the fact that I have osteoporosis, I can not take a bone graft taken from my own body so will have to have donor bone.

I just had an MRI in an interesting way which I will post pictures of later haha. (I was amused.)

Now I have pre-op to meet with my surgeon on Monday and set up a date to operate.

So yep!! Always something in the life of Katie..... :)

Dear Me

Dear 10 year old me- Don’t be afraid to jump off the swings and break a bone, because in one year, you will break a bone simply by walking.

Dear 11 year old me- Be prepared for your life to turn upside down. Whatever happens, live in the moment and never take life for granted. 

Dear 12 year old me- Do not take school for granted. When you start to miss months of school at a time, you will begin to beg to be able to go to even one class a day.

Dear 13 year old me- Savor the ability to run and jump and skip with your friends. One day you will struggle to keep up with them while walking in the halls.

Dear 14 year old me- Do not take playing sports for granted, because soon you won’t be able to compete like you used to and you will miss it immensely. 

Dear 15 year old me- Don’t be scared to start chemo. It will become second nature soon enough. 

Dear 16 year old me- Savor the moments of being in the symphony. Next year you won’t be able to move your fingers fast enough to be in a professional orchestra. 

Dear 17 year old me- Savor every moment of playing oboe, because next year you will have to switch instruments because you won’t be able to hold such a small instrument anymore.

Dear 18 year old me- Don’t hate your medicine for deteriorating your body, wearing glasses makes you seem more sophisticated for college.

Dear 19 year old me- Don’t be afraid to let people know about your disability, because those who will judge you for it don’t matter and those you care about you will not mind.

Dear 20 year old me- Don’t be afraid to ride that roller coaster, because in one year you will receive an implant in your heart that will not allow you to do so ever again.

Dear 21 year old me- Don’t be afraid that you will never find love, because one day you will find someone that will love you for and despite of your disability. 

Dear 90 year old me- Look back at your life and smile. Frowning causes wrinkles.