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Jemsek Specialty Clinic (First trip - 6/8/2017): Video/vlog and written updates below  (more to follow as health allows)

6/29/2017

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Hey friends,

I know it's been a few weeks since my first visit to the Jemsek Specialty Clinic, and I haven't been able to do a proper update just yet.  I DID, however, finally at least put together a short video of our trip there/back and a brief update about the appointment.  I will be getting into more details later, but this past month, including the weeks since my visit, has been hectic and...an adventure...to say the least.  (Like momma always taught me, try to approach difficult life circumstances as adventures, AND as processes which are refining me, making me the woman of God He intends for me to be, on the path to health, restoration, and a full life with my husband for whom I'm so thankful there's not an adjective strong enough to describe it.

I'm including the video update below this paragraph, and it gives you a general idea of how the trip/appointment went (accompanied by some Mandisa tuneage :-) ), and although I plan on going into more detail about our actual plans hopefully soon, I may save that for a video I make after my phone consult/adjustment of meds/supplements/protocol on July 12+1.  The text below the video is an update I typed to share on facebook, as well as on our GoFundMe campaign updates tab, so if you choose to read the text instead of to watch/listen the video, if any references seem out of place, that's likely why.
And here is the text update we/I wrote for those following our story on Facebook/GoFundMe:
D.C. Update (Yep our Wildwood W traveled with us–#funwithW)
-
We have great hope about the treatment plan we are beginning with my new doctor. The next month or so will be focused on getting my body to a baseline level stable enough to begin actual treatment. As it stands right now, my body isn't able to absorb nutrients well, my pain of all kinds–particularly full-body shooting neuropathic pain, and 24/7 (not exaggerating) trigeminal nerve and facial pain, with a side of "brain is trying to break out of skull" pressure/headache that hasn't left for >1,600 days, and those are two of many more types of pain I won't list here for sake of whatever brevity I may still achieve yet.

(Sorry, y'all, paring down what I write has never been a strong suit of mine, and I likely have several teachers and professors who can attest to this fact.)
Maybe bullet points would be easier:

For this first month (SEE EDIT IN BOLD BELOW FOR MORE INFO ON THE TIMELINE):

- We are focusing heavily on getting nutrition and absorption of nutrients where it needs to be. I'm determined to do whatever I have to do to beat this illness, so of course prayers are appreciated.

- Trying to find a combination of methods/medications/supplements that can get my pain and sleep both to a manageable level (meaning, we're not expecting 8 hours a night or zero pain, but we need to try to get them under control as much as possible for my body to be able to withstand the actual treatments when we begin them).

- I have a revamped medication and supplement schedule, and I would appreciate any and all prayers on that front particularly immensely, because I have a great deal of anxiety about taking medications at this point in life, even if they're only needed temporarily, especially when they've not shown to be of help yet (but 3 days may still be an adjusting phase–a specific prayer you could say, if you're like me and like to pray specifically, is that they would either begin to do what they're designed to do–reduce the pressure/pain in my head/brain, increase appetite, reduce nausea, improve sleep, among other things–or that, if required, we'll be able to contact the clinic and make needed helpful adjustments).

- We also have logistical things to work out in this first few months, such as getting certain labs drawn so they can have them on hand to gauge medical readiness for treatment, and many other calls and things we need to set up and confirm before we can begin my real bug-killing treatments.

- On July 12+1, I have a phone consultation with the clinic and I will be told at that point if my labs and other factors are good to go as far as being ready to start these treatments that are so hard on the body.

::EDIT::  WE NOW KNOW IT WILL LIKELY TAKE A FEW MONTHS TO GET MY BODY STABLE ENOUGH TO START TREATMENTS, BECAUSE THESE FIRST LINE OF STABILIZING OPTIONS HAS BEEN, AGAIN, AN ADVENTURE, AND NOT REALLY THE FUN KIND.

- Once given the go-ahead, we will likely have to make a 3-night trip to D.C., the first day to be spent having a central line/PowerLine inserted into my chest, the second day spent test-dosing my first combinations of IV antibiotics and other meds to rule out allergic reactions, and learning any and all PowerLine related things, which takes several hours, then eventually coming home.

- Once home, we will be doing these infusions ourselves (since they teach you how at the first IV appointment), and we will initially have to return to D.C. every 4 weeks once started.
It's all a time commitment, a financial commitment, an endurance and perseverance commitment, and most of all, a leap of faith–and it's the last to which we're clinging to desperately, because we know I wouldn't be alive today if not for God and His grace and plan for my life and our future together as a family.
-
Thanks to all who follow our journey and have encouraged or supported us in any way along this roller coaster ride. We still have a long road ahead–they say the first 4-6 months of the IVs are the hardest, and likely will be the hardest treatment I've endured yet, but the way Lyme and friends work, you almost always go through the feeling worse before you get to the better–we were told at the clinic that they usually start to see noticeable, and more significant improvements in the last 2-3 months of IV treatments, and the IV portion of treatment initially lasts 9 months, at which point they will switch it to oral treatment, if I'm able to tolerate it at that time.

I hope that made sense, at least somewhat–I know it's a lot of info, but I also know we promised you an update, so since everyone else is running around like crazy trying to handle other things we have to do asap, things I DEFINITELY can't do physically or mentally right now, I thought I'd at least do my best and try to update here.

As always, we are so very thankful and appreciative for all of your kindness, generosity, and support–we are very hopeful about this treatment, and right now we are focusing all efforts on restoring my body as best we can to a place where it will be able to handle the intense treatment.

I'm not exaggerating one iota when I say the IV treatment protocol (and accompanying oral protocol) for late-stage neurological/chronic Lyme disease & co-infections is its own version of chemotherapy, as far as the toll it takes on the body. Which I say NOT to diminish cancer–not at all–cancer is an insidious disease and an epidemic and I hate it in all its forms and by all its names. I only say it to emphasize this fact: so is chronic Lyme disease (and the co-infections that come with it), and not many know just how hard a toll adequate treatment takes on the body in this situation.

But I really just wanted to try to update y'all as best I can. Time to crash now.

Love you all.  God still works miracles in 2017, and we are claiming this one, albeit to be completed over a significant stretch of time, to be delivered and worked out fully in His name–He gets ALL the glory.

#LymeStealsGodHeals #LymeisLame

If you would like to/are able to check out and/or share our GoFundMe campaign, that would be wonderful and we would be so grateful, but if not, we totally get it.  We do appreciate every prayer just as much as every cent we receive from donations–prayer is healing, and we know that God has led us here at this point in time, and we know He will continue to provide the financial means as they're needed–we are claiming that in faith right now, in the name of Jesus!  If you want to claim it in prayer with us, that'd be pretty amazing, too.  Where two or three are gathered, right?  Even if it's via the internet. :-)  IF you are interested, though, the link is below:


gofundme.com/beccadoss
We ARE in a battle, my friends, but we ARE going to win.  And I'm not just talking about myself, I mean any of you reading this.  Even on the worst days, there IS hope.

​I promise.

Keep fighting.  Keep getting up.  And I can't wait until we're all back to LIFE.

Until then, God bless, always,

​Becca
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  • Blog
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