Ten Months Post Stem Cells – A Snapshot Into My Lyme Disease Healing Journey

Time has a tendency to pass more quickly than you realize, especially when your days and nights meld together.  It’s been several months since my last update, not for lack of intent. I’ve started a handful of posts, but missed the oomph to organize and finish my thoughts. Providing for yet another mini blogging break, and resulting in much to share.

Without further ado, let’s get this blathering started!

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At ten months post stem cell therapy and four months post ACT, autologous cyto-immunotherapy, the ups and downs of this healing journey still continue daily.

I am, however, tickled pink to share I’ve experienced noticeable improvements recently. Crazy thankful for forward progress, albeit slow. A smidgen of reluctance comes over me as I type the words “noticeable improvements” and “forward progress”.  I don’t want to mess with this positive juju!

Improvements, yes, but there’s a slim chance I’ll be tackling Mount Everest or traveling the world anytime soon.  I’d be quite happy with a stroll around the neighborhood!  At least I appear to be moving in the right direction, even if I’m not actually “moving” a great deal.  Yet!

I’ll be hitting the walking trails before long, or at least blowing the dust off the treadmill.

Life goals!

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Fact:  Any progress is progress.

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Since my four months post stems update, challenging levels of neuro repair and healing have been in full force. A reminder this body is still working really hard for me.

Insights into the post stem cells neurological repair and healing phase.  

For the purpose of this post, let’s refer to neuro repair and healing as NRH. Requires less repetitive typing for me, and a quick acronym for you.

NRH generally begins anywhere between six to nine months post SVF stem cells and may present with a variety of symptoms. The exact length of this healing phase and specific affects are difficult to predict.  Each patient’s healing process is unique to them.

As with treating Lyme and tickborne diseases with antibiotics, herbals, or whatever specified treatment protocol – everyone responds differently. Similar to treating blood cancers with bone marrow (stem cell) transplants – healing the body at a cellular level is a long, slow, and intense healing process – and an individual journey.

The NRH symptoms I’ve experienced over the past several months may be any or all of the following: malaise, fatigue, dizziness, vertigo, tremors, anxiety, brain fog, headaches, blurry vision and floaters, shooting and migrating nerve/bone pain, insomnia – which is confusing since I’m so dang tired all of the time, some days needing to sleep 10-12+hrs.  Heavy emphasis on daytime sleeping – you know, when “normal” human-ing could/should be occurring. I’ll be thrilled when my body’s internal clock readjusts.  I’m not a bat, people!

Another “fun” NRH symptom – emotion du jour. Will I be happy, a bit on edge, or will everything make me cry?  Generally, I’m happy or just quiet.  On the crazy cry fest days, hug therapy is a much needed Rx. That and anything to make me laugh.  Hubby comes in quite handy for both.  Score!

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NRH symptoms will come and go, which possibly equates to the intensity of repair taking place within this body of mine.

Fatigue is the one constant, and it seems determined to hang around. The level may change from day to day, but there’s a cloud of tiredness and weakness hovering – letting me know rest is a must. Thus the lengthy all day “cat naps”.

A positive take on the necessity for horizontal moments, Eddie the cat is more than content to snuggle up under the covers for hours upon end.  Kitty snuggle blessings wrapped up in a 7-lb ball of fur!

The most challenging moments during this NRH phase tend to fall when I’m fighting the emotional imbalances.  Trying to shut the brain off from thinking negatively takes all the discipline I can muster some days.  Unfortunately, the mustering up part may not actually kick in until after I’ve bawled like a baby for hours, and/or shamefully used up precious energy with disruptive thoughts: “why am I not improving as quickly as others?”; “will I ever get better?”.

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Important interjection:  Why must we humans insist on comparing ourselves to others? Seriously, WHY?  It serves absolutely zero purpose.  Be you.  Wherever, whatever, and however…BE YOU!

(note to self:  read what you just wrote!)

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Getting through this neuro healing phase – and for anyone fighting illness or coping with life’s trials and tribulations – it takes grit, determination, perseverance, self love, a whole lot of patience – and hope!

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Playing keep away with my thoughts. 

Being sickly for such a long blasted time, and now in the midst of a lengthy healing process, there’s a fair amount of slow, loud ticks (not a pun) of the clock. Too much time to wrangle with my thoughts.

I try not to let my mind wander backward or play the “what if” game, but there are moments when I give in to such temptation. Oh, how cruel our wayward thoughts can sometimes be!

I’m more of a glutton for memory lane punishment when birthdays, holidays, and anniversaries roll around. Certain dates prompt reflection upon the reality of how flipping long I’ve been trying to regain my health.  It tends to hit me like a sucker punch. The sting lingers.

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Just not fair – this illness path.

(honest and real thoughts of most, if not everyone, fighting for their health.)

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In those moments when I drop my defenses, the following realization remains a little difficult to swallow: I spent over half of my thirties and the entirety of my forties basically bedbound and miserable at the hand of illness.

When I reflect back upon all of the family gatherings and special events I’ve been unable to attend; how much life and “living” has been spent within the confines of my home…well, I can’t allow myself to stay in those thoughts.  I simply can’t.

I had high hopes of where life would have me by the time 50 rolled around. That milestone birthday came and went, and another year has rolled around in it’s place.

Now 51, I’m choosing to focus on the hope and potential of what the backside of my time here on earth may provide.  This doesn’t mean reality isn’t simply that – real – and in-my-face present. Retraining our thoughts, and having optimism in general about the future has to begin somewhere. Yes?!

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The actual reality:  Regardless of the struggles, trials, and miserableness I’ve been given, my “issues” pale in comparison to countless others. So, no wallowing buttercup. My life has been and is pretty gosh darn grand.  Perspective!

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Focusing on the positive.

I shared earlier the symptoms I am and have been experiencing throughout this post stems NRH phase.  And, I confessed that I struggle with non-productive thoughts – wondering about all that may have been lost throughout these sickly years.

Goodness knows ALL I’ve gained totally outweighs my “loss”.  This is a much larger topic to be expanded upon in a future post.  For now, let me share a truly wonderful, stop the presses positive bit of info – worthy of a boastful, yet cautious, interjection:

Debilitating and undoubtably miserable symptoms I’ve coped with for decades – specific to Lyme, Babesia, Bartonella, and GI disorders – appear (in this moment in time) to be calming and fading somewhat to the background.  I’d love to share that these symptoms will lay timid forever, but there’s no real way of knowing. HOWEVER, I’m overjoyed these symptoms are currently laying low.

Does this mean my new stem cells and supportive therapies are indeed giving my body the healthy restart it needs to heal thyself?  Only time will tell, as I continue to move forward through this healing process. I certainly hope so. This is the plan!

I’m hesitant, once again, to share such encouraging progress.  I really don’t want to mess with these current positive and healing vibes.  Seriously, I just knocked on my solid wood end table – that’s how crazy superstitious I am about throwing off this glowing aura!  Decades of battling Lyme/chronic illness, and being repeatedly slapped in the face by failed treatments, disappointment, and false hope – it can make you absurdly paranoid, cynical, and a little cray cray!

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In all seriousness, these positive improvements offer significant hope. Not only for me, but for others fighting fiercely for their health.  We can never give up, or give in!

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Summarizing the here and now.

I’m over the moon thankful for my stem cells, and feel blessed beyond measure for this healing path.  Even if slowly, I do sincerely feel I AM HEALING – at my body’s pace.  Patience is still the key, as there’s substantial healing still ahead of me.

Depending upon what transpires over the next few months, we’ll evaluate at my twelve months stem-iversary to see what future steps in treatment may be needed.

Let’s hope by August 3rd, this body of mine has made it’s way through the NRH phase, is stronger, and full of renewed energy.  Maybe by then I’ll be upright on a regular basis and walking laps around the neighborhood!

Gotta keep this positive flow and hope alive.

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Why I share my journey.

I’ll start to wrap up this Blathering by sharing a little insight as to why I choose to blather on about Lyme disease, chronic illness and my healing journey.

I was asked to share my story during Lyme Disease Awareness Month a few years ago.  That process was extremely cathartic.  I then began blogging as a therapeutic outlet.  This avenue also provided a universal way to keep family and friends updated on my health and treatments.

I’ve tried to grow creatively over these past few years.  All while (hopefully) offering relatable and helpful blog and social media posts for others, who are trying to find their way through the various colors and seasons of Lyme, tickborne disease, and chronic illness.

After receiving SVF stem cell therapy last summer, I wanted to offer real snapshots into my journey and personal experiences.  Again, hoping to provide (at least somewhat) useful information: for other stem cell patients; anyone considering this treatment path; updates for those interested in following my chronic Lyme disease story – as I find my way to wellness.

I try not to blather simply to blather!  Ha!

As I continue to heal and regain strength, I hope to write more and follow through with other creative projects I have bouncing around inside this brain.  I’ve written several (purposeful?) blog posts and potential chapters in my mind the past several months.  Maybe l’ll remember these (clears throat) “masterpieces” again one day.  (chuckle with deep sigh combo)

If only Siri could understand and dictate my thoughts.  Wait, Google is already working on that…perhaps I should be careful what I wish for!

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Before I close, I’d like to take a moment to thank everyone who has taken the time to reach out, especially recently, either to see how I’ve been doing, to inquire more about stem cell therapy, or to simply connect.  I’ve made some incredible friendships throughout this crazy path. I’m truly grateful to each and every person with whom I’ve been blessed to meet – in person and through social media. Thank you for being my Tribe!

Until my next Blathering – I’m wishing for unstoppable strength to each and every person facing illness or adversity.  May you all keep moving forward.  I sincerely hope you’re able to see and feel the sun’s rays through the clouds.  This life truly is a gift!

Blessings, positive light, and good vibes to all.

Terry?The Blathering Lymie

 

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Disclaimer:  All information shared in my blog posts are solely personal experiences,thoughts, and/or opinions.  I do not share or offer any medical advice, nor will I ever choose to do so.

Dammit Jim, I’m a blogger not a doctor!  (any Star Trek fans?)

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For more information about SVF stem cell therapy or Infusio, please chick here.

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