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I'm sad

Lizzie in Ma

By Lizzie in Ma,
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Lizzie in Ma

Lizzie in Ma

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My heart is heavy for our eldest.  She will be turning 18 soon.  It should be a time of great hope, college shopping, new adventures and excitement.  She should be graduating and moving on in life. 

 

But she isn't and she won't be for the foreseeable future.  In her immediate future there are only pills, supplements, injections, a procedure to put a port in for iv meds, and more rounds of of the same.  There are heating pads, meds for pain, meds for nausea, meds for panic attacks, detox baths and insomnia.

 

I found her crying last night.  And she apologized for "being upset over nothing".  And my heart broke.

 

She wanted to have a normal birthday, go out to dinner with her family at our favorite place.  And she can't. 

 

She can't because due to her diet, she can't eat anything at the Chinese Buffet.  (which is where she wanted to go)

 

She can't because even if she could eat something there, she would last about 20 minutes tops before she was too exhausted to stay or her anxiety and panic would have her bolting to the car.

 

She can't because her pain levels keep her from leaving the couch most days or her bed on some.

 

She can't invite family and friends to come and celebrate because it is too exhausting for her.

 

We can't plan anything because she never knows how she will feel on any given day and mostly, she feels wretched.

 

I can't make it better, I can't take it away, I can't even tell her it will get better any time soon.

 

So I am sad.

 

Ironically, her birthday is during Lyme Disease Awareness Month.  For her sake, I will share this PSA.  Get educated, understand the issues with testing and listen to your gut. You know when your kid is sick, fight for them.

http://arizonaadvancedmedicine.com/lyme-disease-article/

 

 

 

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Flowing Brook

Flowing Brook

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I am so sorry. Would it be possible for the hive to give her a eighteenth birthday card shower? If you don't mind sending me your address I'd love to send her a card with a little something in it. I know it won't take the place of what you all would like to do. I'd just like to hopefully brighten her day a little. I hope she feels better soon. :grouphug: :grouphug:

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J-rap

J-rap

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I'm so sorry.  Your daughter has Lyme's Disease, then?  Sorry, you probably explained this in an earlier post and I missed it.  Did she have it long before she was diagnosed?  How long has she been undergoing treatment for it?  You don't need to answer these questions if they are too personal, of course!  Praying for a thorough recovery!

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Lizzie in Ma

Lizzie in Ma

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I'm so sorry.  Your daughter has Lyme's Disease, then?  Sorry, you probably explained this in an earlier post and I missed it.  Did she have it long before she was diagnosed?  How long has she been undergoing treatment for it?  You don't need to answer these questions if they are too personal, of course!  Praying for a thorough recovery!

 

I don't mind questions and I am so very grateful for you all.  I will share our story in the hopes it might help someone else.

I know there are a couple folks on the boards who have been through this and they have been incredibly supportive.

 

Yes, she had it for several years before being diagnosed.  She had positive Lyme Western Blots from 2009 on but as they were negative by CDC surveillance standards, they were marked negative and we didn't know any better.

Now we do.

Her symptoms were diverse and many but included crippling headaches, cognitive issues, processing issues, transient joint pain, stabbing abdominal pain, vertigo, nausea, rashes that came and went, eye issues, night sweats, generalized all over pain, depressions and anxiety issues.  

In 2011, armed with research we went back to our primary care who, literally broke down in tears and apologized.  And she has been in and out of treatment for Lyme since August 2011.

 

This February, her legs and joints got so bad, she couldn't walk well at all or for any length of time.  We finally went to see a Lyme Dr. in NYC.  You may ask why we hadn't, good question,  They don't take insurance and the first visit was $900 with a $3100 lab bill as well.  Nuff said.  I still wish we had done it earlier.  No matter what it took.

 

Turns out, the tests for co-infections are as problematic as tests for Lyme and while hers, in 2009 were negative, like the Lyme, that meant little.  She does, in fact, have Bartonlla and Babesia as well and the trio together were creating absorption issues with the Lyme meds.  She also has systemic Candida from all the antibiotics.  So, now she is in treatment for the co-infections and we are waiting on prior approval for a procedure to put in her port for IV Lyme meds.

 

The thing is, the medications, and the die off from the organisms, flood her body with toxins and make her very ill.

She in in constant pain, light sensitivity to the extreme, cognitive and processing abilities are shot, anxiety through the roof, she is clammy and cold and feels like her skin is crawling.  And other than flushing with lemon water and detox baths, there isn't much we can do for her to help.

 

There is hope, at last.  She is finally seeing someone who knows what he is doing and our primary care is working with him.  He says we can get her to a quality of life state of remission and I believe him.

Just having been in the trenches so long, to have been sick her entire teen years, to lose friends who don't understand because "you don't look sick", to holding her through mini seizures or through the panic attacks, some days we all just feel defeated and down.

 

You guys have no idea what coming back to this post and seeing all your kind words and love mean for us today.  She and I scrolled through the replies and we were both crying.  The understanding and the fact that so many of you took the time to post is a blessing that touched us deeply on a day where we truly needed it.  So, on Rowan's behalf and my own, bless you all and thank you from the bottom of our hearts.

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Tiramisu

Tiramisu

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Lizzie, you and your dd are in my heart and prayers. 

 

Through your kind posts and your dd's courageous example, you were such a support for me through my own dd's tough high school years. I will always be grateful to you both.

 

:grouphug:  :grouphug:  :grouphug:

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joannqn

joannqn

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I pray that you both have the strength needed to get through this and that the doctors have the wisdom to prescribe exactly the right treatments needed.  I hope your daughter's recovery is faster and easier than expected.  May you be blessed in ways that you cannot imagine and see light at the end of the tunnel soon.

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fraidycat

fraidycat

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:grouphug: :grouphug: :grouphug:

 

:( You guys have a lot on your plate. Prayers and good thoughts for a quick recovery with the correct protocol so she can get back to "normal" ASAP. It is my hope that she celebrates her 19th at the Chinese buffet restaurant for hours, with a huge crowd of loved ones in attendance.

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datgh

datgh

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:grouphug: :grouphug: :grouphug: to your daughter.  Praying that she is all healed long before he 19th birthday!!  Thank you for sharing your story.  I will share it with my kids. They just don't understand why their mother and grandmother got nuts about checking for ticks. (My Mom has had the bulls eye rash twice and my MIL had Lyme disease and I really believe that is where her demintia is coming from) My kids don't realize how sick you can get from one little bug bite!

 

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swimmermom3

swimmermom3

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Lizzie, thank you for the update. :grouphug:

 

I was wondering a couple of weeks ago how you and your lovely daughter were doing.  It is very difficult to watch a beloved child struggle with what your dd so eloquently called "invisible illnesses," and to feel helpless as a parent in one's inability to remove the cause of suffering.

 

You know we hold you in our hearts and wish you, your daughter, and your family peace of mind and renewed health.

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FloridaLisa

FloridaLisa

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Thank you for sharing your dd's story.  That's a lot to deal with, on so many levels, as a young girl.I'm so sorry.  I pray that she will experience some good days that will continue to carry her through the hard days.  I know a some about wanting to take away awful pain for your kids.  Many hugs to you, your dd and all of your family as you push through this.  

 

:grouphug:

 

Lisa

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