Thursday, July 17, 2008

I Saw The Lyme Documentary...

I wish I could relay information to you regarding Under Our Skin. I couldn't possibly put into words all that is captured in that movie.

I drove 2 hours last night (we'd already driven 3.5 hours to my MIL's house earlier in the week) to get to the movie screening. I knew as I walked in that there were others in like situations as they walked the Lyme journey. I heard people discussing their onset, history, treatments... I kept quiet.

There was literature featuring symptoms, treatments etc... I didn't read.

I'm fairly certain I know all I need to know about Lyme Disease... any further information would serve to add fear and or uncertainty to my journey at this point. But I did go to see a movie that was said to educate, make aware and document case studies of individuals battling Lyme... and that will be encouraging to see- or so I thought.

It was a VERY difficult movie to watch. Extremely difficult. First- seeing others suffer in ways (and far greater) as I've suffered is overwhelming. To see multiple people explain how the mainline medical field dismissed their symptoms... maddening. And worst by far... to hear a physician previously diagnosed with ALS say that as long as he is on IV antibiotics and oral meds he keeps his health in check but once off the "ALS" (Lyme) progresses with ALS like symptoms... and that it will indeed kill him if he is not agressive. Well, that my friends is difficult to view.

Because my symptoms presented like ALS. My symptoms are neurological. And my symptoms are much worse off IV antibiotics. But it is not at all in our means to remain on IV antibiotics. And the guidelines that the mainline medicine follows regarding Lyme, the guidelines the insurance companies follow regarding paying for treatment... says that one round of IV Abx is all one with Lyme would ever need.

And if that wasn't hard enough to watch... I viewed death certificates that noted Lyme Disease as the sole cause of death. And one certificate specifically said, "ALS/Lyme Disease".

The movie was informative! And for those that aren't subjected to a relative walking the path of someone with Chronic Lyme- it will show the extreme nature of this disease in different perspectives so that a well rounded picture is formed. but for those of us on this treatment journey- it is a hard thing to watch.

I bought the movie. I want my husband to see it. There are perspectives in the movie I know he will benefit from seeing. Some confirming what I've said about my symptoms all along... some confirming the serious nature of my symptoms... and some confirming the difficulties of walking along side someone with a chronic illness.

If a screening comes available in your area... I really urge you to see it. Lyme is not ONLY in Connecticut. There are people in this movie from Orlando, Nevada, California, Seattle, and Michigan. I know some of you are from those places and think you are outside endemic areas. IF you see deer in your state... there are deer ticks. And deer ticks transmit Lyme Disease.

As for an update regarding my health... I am currently taking both oral and IM (Intramuscular) antibiotics. It is a difficult treatment course but I know full well there are times when it gets worse before it gets better. I am definitely worse at the moment. Please be praying for my neurological system. It is quite active. I have shaking, tremors, myoclonic jerks, muscle twitches. My throat, though swallowing fairly well, has muscle twitches quite often as does my tongue. And my muscles are noticeably weaker. (Though I am plenty capable of walking, driving, typing, folding laundry etc. )

And on an extremely positive note- tomorrow I'll be getting together with Tara and baby Charlie on our old stomping grounds... Messiah College. Actually, I suppose I'll be getting together with K2 as well. (She is pregnant with her second child) That will make for a wonderful end to a wonderful week here in central PA.

12 comments:

Beth (A Mom's Life) said...

I'm glad you got to see the movie even though I'm sure it was very difficult to watch.

I continue to pray for you and your health.

Have fun visiting with your friend!

Mari said...

I can see that viewing that movie would be interesting but so hard. I'm in Michigan and see lots of deer so I appreciate your education. I'll watch for the movie. And - I'll keep praying for you, my friend.

Nancy said...

I read between the lines that it was sort of love/hate thing for you to have seen that movie. Your blog is very informative about this awful disease. I will watch for the movie and keep praying for you.

Colored With Memories said...

Thank you for getting the word out about the movie and this disease. Your story is powerful.

Pam said...

Huh????

Thanks for inviting ME!!!

:) Seriously, I didn't know you were doing that. I haven't talked to Tara enough this week I guess!!

Have fun :)

Rebekah said...

I'm sure that was very difficult for you to watch but I am glad you got some answers/confirmations. I hope the movie helps your husband as well

Have a great visit with your friend

Michele said...

Wow! I so admire you, Chelle! You're faith inspires me. I complain when I have a little stomach bug or something.

We have deer all over our yard, I'll be more careful to watch for ticks for sure!

Joanne said...

Chelle,

You probably don't want to hear what I am about to say, and knowing you, you may even tell me to take a long walk off of a short pier...but...

You have no idea how much you inspire me. You have yet to let this illness get the best of you. I know you have hard days and I know you are probably hurting more than you let on, but your children and your husband are your first priority. You love on them, you make them laugh and you make one of the most difficult circumstances, being sick, normal for them. Trips to the park, swimming pools, running out just to get a donut.

You are head and shoulders above the rest of us Chelle.

You truly are.

Praying for you tonight.

Love you friend, Joanne

Joanne said...

...have I mentioned yet just how happy I am to see you blogging?

You are a writer. Writer's worship with words. With the words He gives you, we are blessed.


Now get to bed!

Tara said...

Chelle', it was great to see you finally. :) I'm so glad you made it despite your irritating morning...not to mention the thousand degree heat. Thanks for chasing Charlie all over the place while dodging all the sweaty teens, lol.

Michele said...

Chelle, I saw FIREPROOF yesterday and thought of you. Go to my blog and watch the song by Warren Barfield! Have a great weekend!

laurashoemaker said...

Hi Chelle,
Thank you for sharing your life journey's with the world. I stumbled upon your blog from my friend's blog, Carolyn Master. Your symptoms of Lyme Disease prompted me to contact you. My husband has similar symptoms, "The Genetic Freak", and his current diagnosis is Parkinson Disease. This may not be the final diagnosis after multiple misdiagnoses. Could you share with me how they determined your diagnosis? IS it in a specific blood work report? Any help you can offer when you are available, I would appreciate it tremendously.

Thanks so much.
Laura Shoemaker
www.laurashoemaker.blogspot.com