Rare Diseases. Today, there is a global initiative to bring together the communities and the researchers.
Even though the diseases are rare, there are many living with rare diseases. According to statistics, there are more than 60 million people afflicted by over 6000 rare diseases in the US and Europe alone. Not such a rarity.
Doing my part to share this information with as many people as possible. Take some time to look around the website.
If I were a bit more coherent, I'd share much of the information here rather than suggest clicking the link.
I'm still recouping from a bone graft in my jaw. Not complaining, just observing that the recovery is taking longer than I expected. I thought I'd skip out of the oral surgeon's office, use the pain meds and be loopy but functional. It didn't play out exactly as I hoped or planned.
Today, I'll be watching a hashtag hoping to see a global push on behalf of all of those living with rare diseases. Tomorrow, I'll be watching Washington DC to see if spending cuts can be handled a bit more maturely.
Sunday? I'll be singing Happy Birthday to Mom.....
And Monday, I will be back. Swelling gone, pain gone, on the mend. Trying not to think about the CT scan, the sinus lift and the implant -- all looming on the not so distant horizon.
COMMENTS NOW CLOSED. SPAMMERS FOUND THEIR WAY TO THIS PARTICULAR POST AND FLAMED IT IN AN HOUR.....
COMMENTS NOW CLOSED. SPAMMERS FOUND THEIR WAY TO THIS PARTICULAR POST AND FLAMED IT IN AN HOUR.....
The rare disease link and information is quite interesting. I am sorry you are having all of that uncomfortable dental work. I recently had a tooth extracted with bone grafts and you have to be patient and give this type of dental work time to heal. Most important, please wish your mom the happiest birthday this weekend. Hugs and XoXoXo - Susan
ReplyDeleteThanks, Susan. And thank you for the bday wishes for my mom. I know she reads the comments and I KNOW it makes her smile to see how many people are sending her good wishes.
DeleteHappy weekend and I'm trying to be a patient patient. TRYING is the big word....
:)
AnneMarie
xoxox
{{{hugs}}} to you AM as you go through these dental issues. They are SO not fun! My mom just spend the better part of a year going to weekly dental appointments (she had implants and all her teeth either capped or veneered) and she could have purchased a lovely sports car (if she still drove, that is) for the price she paid in dental work — but oh, she has such a lovely smile now, and she loves to smile again!
ReplyDeleteBIG happy birthday to your Mom and BIG hugs to YOU as you handle each step of these dental procedures. They really do require patience.
I am off to look at the rare disease link now!
Renn....
DeleteWhen I found out about all of the dental work, it freaked me out. I'm not so good in the chair although, my dentist says otherwise. And I hear you on the sports car thing. The only thing that makes it tolerable (and less financially devastating) is the down time. It's less of an issue when these visits/bills are spread out over an entire year!
Big hugs to you, my friend.... and tons of love, too...
xoxox
Darling AnneMarie, I know from my sister's experiences the hell of oral surgery. And even with that you keep up your advocacy. You are freaking amazing and I am sending oceans of love to you and your mom from the snowy midwest. Love, Acacia
ReplyDeleteLove you, Acacia....
DeleteI saw you were getting ready for a class (a note on FB, I think) and it makes me smile that you are out and about. Your recent snow has been our rain.
As for the hell of oral surgery.... it didn't help that I couldn't take the damn pain meds. I couldn't understand WHY since I never had an issue with them in the past. BUT... in the past, I was able to get food into my stomach. This time, I could only eat mush and MUSH is no match for a vicodin...
As an aside, the day before the surgery stuff, I had to go to the regular dentist. I went straight from his office to the store for a new pair of shoes. It's a running theme. If the doctor bills don't bankrupt me, the shoes will.... and it will be well worth it!!
Oceans of love heading west, dear one.... with giant hugs..
xoxox
dear anne marie,
ReplyDeletei am so sorry for all you are going through in the aftermath of the bone graft to your jaw. it hurts my heart to think of you in pain. please, do all you can to be good to yourself. rest, and feel all the love and good wishes coming your way.
thank you so much for posting about rare disease day. as you may already know, hugh's cancer, multiple myeloma, is on the NORD list/data base. the website is so well done, and lets anyone who is interested in being pro-active to support rare disease causes to easily participate. i was impressed with the wealth of resources listed for each disease, and since we often hear from others who are newly diagnosed with MM, we now have a great way to help steer them towards even more help.
HAPPY BIRTHDAY, DEAR MOM, HAPPY BIRTHDAY, DEAR MOM - LA LA LA LAH, LA LA LA LAH...plus big hugs.
love, and powerful vibes for comfort and healing - SOON!
karen, TC
Dear Karen,
DeleteAs I was writing that post, I saw MM on the list and I thought of you. While I knew Hugh's dx, I did NOT know MM is a rare disease.
Sending you love and hugs... I'm taking care of myself. I am finally able to use "the good meds" and it's a good thing. It seems the pain is a bit more intense which is weird but I'm thankful I the vicodin is no longer making me nauseous.
I'm sure my mom will see your birthday wishes. Thank you so much for always thinking of me and of HER!
MUCH love,
AnneMarie
xoxox