to grandpa,
today is your 90th birthday. for 33 of those years i have known and admired you.
ten years ago or so i remember my mom showed you news clips of the organizing work i was a part of in new york. we were fighting slumlords depriving poor people in harlem of shelter, water, heat and electricity in the winter. it wasn’t comfortable and you never batted an eye. i got the sense early on that you believed in this work, you respected it. and you knew it wasn’t easy. you were always for the people, and you believed in people.
and you believe in me. i feel it like a force moving me forward. you lend your optimism and your vision when i lose mine. and on top of all that grandpa, i have you to thank for saving me from the financial stress of acute and chronic illness. since grandma passed last year and you redirected your pension money that paid for her care to me, you have singlehandedly kept me afloat. first this allowed me to get my healthcare bills out of collection, then to pay for all my continued medical expenses and all my regular expenses.
when you started sending me money, i had been too sick to notice the impact of the bills collecting, but i was worried. and you turned the tides. being sick and dependent on costly healthcare is scary and you helped me believe it would be okay. and even if my insurance stops paying for my meds, which is likely around the corner, you help me feel like a fighter yet.
i want to thank you publicly even though you might not like it because i feel tremendously grateful. i also want to share how i am managing with support. most people with late diagnosed lyme disease go into massive debt because of systematic insurance and disability denials (state and federal). some people can’t access treatment at all. some people become homeless. i hear of more and more people who commit suicide.
it is hard to accept that i have this support while so many go without. i accept your support because you insist and because i need it and because you make it easy. you’re so good at making it easy you’ve almost got me convinced i’m doing you a favor. you also made not one but two donations for lyme research on my fundraising page. i thank you doubly for supporting this cause beyond me.
jack and donna mitchell, dream team extraordinaire. i aspire to be as generous and true to my word.
with love,
colby
Click here to read the previous “Touched by Lyme” blog about Colby.
Click here to see her fundraising page for Lyme research.
Click here to read Colby’s blog.
Contact blogger Dorothy Kupcha Leland at dleland@lymedisease.org.
Hi Colby,
I just heard lately your story through Dorothy and walked with your friends at the SF walk for Lyme…your friends showed an amazing love and support for you and I was proud to meet them. Your in our prayers for a speedy recovery!
Colby,
Did you get a second opinion on the chiari malformation surgery?
I had a craniectomy/laminectomy/ and duraplasty at UCSF in 9/09 for my CM after 3 years of
head aches, spine problems and horrific neuro
problems – ( and about 10 different doctors).
It was controversial because when I first got sick in
August of '06 UCSF did a MRI and said no CM.
Then as problems continued to get worse – UCSF did another MRI in August '09 and said there is a CM and suggested surgery ASAP!!
Continued to have problems(but doing a little better than before surgery) up to 3 months following surgery – they thought it might be
permanent CM damage but weren't sure.
Then in May of '10 – developed small and large joint pain – had GP do western bloc blood test
to check for lyme.
Sure enough, tested positive for 8 out of 10 bands
then 10 out of 10 a week later! Very late stage lyme- about 3 or maybe 30 years late.
All the usual treatments – doxy, 28 days of IV ceft.
Still sick in Oct. but a little better.
Colby – my point is I think there is some relationship between the CM and the lyme!!!
I tryed to express this notion with the neuro docs.
over at UCSF when I was diagnosed with lyme in May '10 but they poo pooed it!
I am sure you're finding out how little most
doctors even know the basics of lyme disease.
Please tell your neuro surgeon about my case – you're probably having the same surgeon.
( Doctor W. or the younger Doctor PM ? )
Good luck – have them watch for post surgery
asceptic meningitus – (probably do to lyme)
I got it and was on steroids for about a month.
Email me if you have any questions.