Heather Lynn Update 7/1

Hey everyone!

How is everyone doing?
I thought I’d write up an update since I’ve been going to a lot of doctors recently.
I also haven’t updated you all after my 2nd ketamine infusion & my thoughts so far on the Alpha-Stim!

I guess I’ll start with the “not really good news” first …
A couple weeks ago I had an MRI done of my RT foot (the foot that I broke). They ended up finding Bone Marrow Edema in 2 separate areas.
From what I’ve gathered online through research,and from the doctors, there is no cure for bone marrow edema. But there are treatments.
Actually, I should rephrase that, There are treatments available for people who are overall healthy (aka don’t have things like CRPS). The common treatments that are very effective to get rid of the BMEdema, would negatively effect my CRPS.
At this moment, we are going to try a “Bone Stimulator” in a couple weeks to treat the BM edema. That’s the only thing the Doctor could offer. 😦

**Here is a video I recorded a month or so ago… You can watch the nasty color changes right before your eyes 😦 this was a flare from a weeks worth of raining!**


( photo from http://www.fightlikeagirlclub.com)

So! Lets hope for the best! πŸ™‚

Around a Month ago, I finished my 2nd ketamine infusion treatment!

I will say, I have noticed a significant difference in my mood (depression/Anxiety).
I also noticed for the first 2-3 weeks after the infusion, I was able to dream!!! It didn’t help me get to sleep, but when I fell asleep…I had *Dreams*! REM sleep! Woot woot!

I am able to get my 3rd infusion in August, I am hoping that I see even more results! If I don’t, then I won’t be able to receive anymore ketamine infusions..Each infusion I get,I notice an improvement somewhere though,I hope they allow me to continue.

**Next, The Alpha-Stim! **
First, I’d like to thank each and every one of you who donated on http://www.gofundme.com/LRTR2013
*Because of you all, I was able to purchase the alpha Stim, as well as cover a couple co pays for doctors appointments!*

The Alpha-Stim that I purchased, helps anxiety, depression, insomnia,and even **PAIN**!
I will say, I have noticed a difference over all! Except for the pain 😦
BUT! That’s because I had a *Heather Moment* up until a week or so ago. There is the part that clips to your ears (Which is the part I’ve been using) then there are two other parts.
Well….those two other parts are the parts that are supposed to help with pain.
I am going to be honest, I haven’t tried them. -One of the options for helping pain are patches (kind of like the TENS unit).
-The 2nd option are “probes”, which look interesting.
The reason why I am kind of scared to try them is because you must put them directly on the area that hurts. Since I have CRPS, there are times when even a blanket brushes against my feet! So,the thought of those things on my feet, freak me out!

*(both feet/legs are cherry red/blotchy… My pain was so bad, that I was sitting by the toilet,ready to vomit)*

BUT! I am going to start using the patches on my lower back, this way I’ll be able to see if they help my pain,then I’ll go from there!
(( A few months ago, I had to get an MRI on my lower back, and they noticed that I’ve developed arthritis))
If I notice a difference there,then I will think about the best way to be able to use those on my feet.

Over all, I am happy with the Alpha-Stim, I think it has made a difference in my over all mood(which is very important-to help control flares). πŸ™‚

When I was at the doctors last Wednesday, My doctor pretty much told me that I can try the Ketamine 1 more time, if it works, then I’ll stick to that treatment forever (until they find more treatments or hopefully a cure!).

If it doesn’t work… Then I was only given two options:

1) the Back Stimulator (SCS)

2) Peripheral Nerve Surgery (Nerve surgery on my right foot)

*Neither choice is an option in my mind*

Not only have I spoken to numerous doctors,to get their opinions… But my gut is also telling me not to do either one of them.

-Surgery is never good if you have CRPS- Spreading occurs.
-Nerve surgery can be very dangerous to anyone! In my case, the specific surgery they want me to have could either A) help things B) not change any change anything. Or C) Makes things worse (which is a huge chance)

So… This kind of puts me in a “not so great situation”.

If you have been reading my blog, then you know that I’ve had my heart set out for HBOT treatments. This hasn’t changed, if anything, I need it now more than ever!


(Photos of a bad flare,involving both arms!)

To make matters worse, I sent in my first application for disability. I WAS DENIED! BEFORE THEY RECEIVED ANY OF MY MEDICAL RECORDS!
I was expecting my first time to be denied (apparently most CRPS fighters do). That’s why I knew ahead of time that I’d most likely need to appeal it,and have them review my case again (by then, they usually approve those with CRPS/RSD).
BUT! I’m already having to appeal the decision, before they even know what they were denying! So I have to go through the whole process again, just to get denied again (like I would have,if they had everything to base their decision on in the first place). It could easily be up to a year before I start to see disability benefits. 😦

Why is this stressing me out?
– Because I turn 26 on November 14th of this year… Meaning, I am getting kicked off of my mothers health insurance (which I’m so grateful that I’ve been able to stay on).

Why can’t I just pay for my own insurance?
– I broke my foot on March 22, 2012. I haven’t had a pay check come to me in over 16 months.
Between my medical bills, living expenses, student loans, car insurance,and other bills….. I have wiped out my parents financially, which I feel extremely bad about.

**Although money is not something I have right now, my main stressor is the fact that I won’t have health insurance in 4 months.**

So… That’s pretty much the scoop.
Finding Arthritis in my lower back, Bone Marrow edema in my right foot, the doctors only giving me 2 options left (both of which, are way to dangerous for me to even think about saying yes!), and Getting denied for disability(as in not having health insurance after November) …

Regardless of all this crappy news, I must try to think positive. Or else I’m allowing the CRPS win… And that’s just not expectable. I’m way to stubborn for that! πŸ™‚

My goal? **HBOT**
Although I’m back at square 1 with donations ( the Alpha Stim used most of it)
I’m hoping to be able to raise the funds, so I can get HBOT treatments… So I can get my life back.
*I’ve started making TuTu’s for infants and toddlers (website coming very soon!) but a post about it will be up tomorrow!*
All profits made will be going towards my treatment.

If you’d like to help me reach my goal to receive HBOT treatments please go to
http://www.gofundme.com/LRTR2013 πŸ™‚

Thank you so much for reading this lonnnggggg update. It’s means a lot. Please share!

Love,
Heather Lynn

 

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12 thoughts on “Heather Lynn Update 7/1

  1. Kerry says:

    I have had RSD for 13 years, and am 26 years old. I hope you find some relief from ketamine next time so you can continue. I’ve even getting k infusions for over a year now and they’ve been the thing that has helped the most since my relapse 2 years ago. I understand the stress of having to get off your moms insurance. I hope disability comes through for you, or that k starts workin enough to get you back to work. That’s what happened for me. I couldn’t work if it wasn’t for the infusions. Best of luck and big gentle hugs

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