Friday, May 27, 2011

Da Count-Some Answers

Over the last year I have made some posts about Calypso's health at times when the situation became overwhelming.  There have been many very difficult days, a lot of questions, very few answers, and next to no idea as to how to address her situation.  Last summer was book-ended with hospitalizations for her.

During the course of her entire senior year of high school she has only had 2 weeks when she made it to school every day that it was in session and for full days.  Both those weeks were short due to holidays.  She's had more absences this year alone than in all the 11 years before this combined.  She has simply been unable to fight off anything. Even when not knocked down with whatever germ of the week that seems to be floating around she has not felt well at all and has been plagued with a host of vague symptoms including a low grade fever which has gone largely unbroken for the entire year.

We've been to several specialists some of whom have taken us seriously but offered no diagnosis, one who simply said Calypso needs a psych consult because it's all in her head.  Ask me how many symptoms I wanted to inflict upon that particular doctor.  My girl has been through tons of testing in the process.

I've watched as Calypso has missed out on so many of the things kids her age would normally be enjoying, as friends have dumped her, and as she has struggled to keep up in school.  I've talked, listened, hugged, and mopped up rivers of tears (hers and mine).  I've told the rest of the family they are going to have to live with the nutritional changes Calypso needs because I don't have the energy or time to be cooking two separate menus.  I've got counters full of supplements trying to fortify this weakened child while we search for answers.

About a month ago we finally began to get some real answers.  It seems she has a long undiagnosed case of Lyme Disease and another tick borne illness carried by the same vector.  We have found a specialist who believes he is able to help her and she is finally under treatment.  It's outrageously expensive since insurance doesn't cover it.  The heavy multiple antibiotics necessary are also pretty rough on her in several ways.  The last visit was both physically and emotionally grueling and left Calypso crying in the parking lot for about 30 minutes after it all.

As my mom and I tried to console her, the father of another patient Calypso's age came over to us and offered some very kind words of encouragement letting us know a bit of his daughter's story and that though the treatments can be difficult and hideously expensive to not give up because it does get better.  He and I both shed a few tears and I thanked him for taking the time to give what encouragement he could.  I've spoken to other patients in the waiting room who have shared their own stories and who are so grateful to have found this doctor after struggling long times in ways similar to Calypso.

This week I am giving a really big count for finally knowing the name of the enemy, finding someone who knows how to fight it, being given a battle plan so we no longer have to feel helpless and hopeless, and for the kind words of other people fighting the same fight.

12 comments:

Craig said...

Lyme disease is pretty scary-ass shit. And yeah, it is cruelly ironic, that it should touch your family, of all people, ain't it? (*sigh*) Sometimes, you just wanna shake your head and say: Not funny, Universe; not funny at all. . .

I have admired, and been inspired by, your maternal courage and persistence, and your daughter's as well. This would have broken many lesser folks.

Hang in there, and know that I do still pray for you both. And I look forward to a Count in the near future, telling of her complete and final recovery. . .

lecram said...

I grew up a sickly child and know a little of what Calypso is going through. I too missed tons of experiences that "normal" kids my age had. At the time I hated it. But there is an upside... if one elects to take it... the development of fortitude and creativity in those "alone" times that has helped serve me in later life.

Of course I credit my parents for facilitating that.

Knowing who/what the enemy is does help. But your devotion, love and encouragement stands above all else in overcoming this... and knowing you... that will never be in doubt.

My thoughts and prayers are with you and may this challenge be overcome quickly. Tis a hopeful count you posted today... may the ones ahead be ones that glow brighter.

Bijoux said...

Wow......shocking that it's Lyme Disease. I'm sorry about the insurance, but hoping it is fully treatable and no chances of relapse?

G-Man said...

((((Michelle))))

Fucking ticks anyway......

Mona said...

O Dear!

I hope that now Calapso's case has been identified, she would respond to treatment quickly, and get back hale and hearty on her feet again!

(M)ary said...

Damn ticks! Those little buggers can't be happy with biting and sucking, they have to leave a calling card for years to come!
Good luck with the treatment. I am excited to hear that you have answers and that the dr has a plan to get your daughter better once and for all.

Moannie said...

What a relief for you to have a name for Calypso's illness. May she begin to fell better soon.

It is only when I read stories like this that I truly appreciate what you call Socialised medicine and what we call The National Health Service. Free to all, rich and poor alike. Sure, it keeps us all quite poor; as diseases grow ever more complex and operations more intricate we are paddling fast to keep our heads above water-but I would rather our way-pay a little out each month when working and you are covered from the cradle to the grave.

snowelf said...

Did you just hear me exhale?
Is it evil to wish that the doctor who said it's all in Calypso's head get his karma swiftly?
I'm so, SO relieved you finally got an answer and that Calypso will finally get the help she's needed.
I feel like for all of your, something finally gave.
much love,
--snow

Pheromone Girl said...

To finally have a diagnosis must be so overwhelming, in a good and bad way. Insurance doesn't cover treatement? What has happened to this world?

I hope treatment makes her feel better VERY soon, and that you know that you rock as a parent for hanging in there.

Dave said...

Michelle, I feel for you, Calypso and your family. May her health soon change for the better and life improve for you all - Dave

S said...

I'm so touched by the father you met in the parking lot, what an angel.

Hello Limes readers...I am still accepting donations for my fundraiser...WINK WINK...

:)Susie

secret agent woman said...

Lyme disease! That's almost ironic. But with a proper diagnosis, there is healing to be had and I'm glad for that.