Scripting this publish brings again reminiscences of my days (which had been now way back sufficient I don’t wish to let you know what number of years its been) of being in College; lap high balanced on my knee whereas I work to satisfy a deadline. To be honest, I truly completed assignments forward of time. I’m not a procrastinator. Nothing has modified in that sense, however my well being – or recently – lack-there-of, has certainly modified and forces me to place off something that’s non-essential.
I wished to publish this publish weeks in the past. The primary purpose was to publish it earlier than I’m going again to Switzerland to my Clinic.
The place am I scripting this proper now?
An airport lounge within the Toronto airport. Sipping on a glass of wine that I’ll finally remorse very quickly. Lyme Illness and alcohol actually don’t combine nicely… however when its free? And you’ve got a 6 hour layover? You simply do it. Reside a bit of now, pay for it later. Typically you simply must faux to be “regular”.
These of you who know me most likely keep in mind that it takes me eternally and a day to put in writing a weblog publish. After I began this one it was originally of March and by the point I’m publishing it, it will likely be someplace round April 20th.
So once I begin the subsequent paragraph with “yesterday” I’m now truly referring to a day method back-somewhere round 40 days in the past.
Yesterday (March 7th) introduced an anniversary that every yr I keep in mind without having to see it on a calendar. Effectively, that isn’t fully true. Recently I don’t know what month it’s, not to mention the date – so I solely keep in mind this anniversary if I’ve taken a glimpse on the calendar to remind myself of what month we’re in. It’s at all times in my head, and I do hope that in the future I’ll neglect about it and depart my very own private journey with Lyme Illness prior to now.
On March 7, 2016 I had a telephone name from my physician. The outcomes from my bloodwork at Igenex got here again. She informed me that the report was actually lengthy, and skim the outcomes. I examined constructive, by the Igenex and CDC necessities for Lyme Illness. I additionally examined constructive for Bartonella, and later once I noticed my first LLMD he made a medical analysis of Babesia. It was a triple menace.
You could possibly say that my Lyme journey formally started in 2016 once we lastly had the reply, however actually – it began inside weeks after that chew again in April 2014. I used to be bitten on the again of my shoulder, close to the armpit (they like heat locations, and that is one space you must make sure to verify). My husband noticed it and despatched me to the Clinic the place I noticed a nurse practitioner and she or he thought it was a spider chew. I wasn’t given any remedy, aside from ointment. I knew diddly-squat about Lyme Illness or that my life was going to alter.
It was a matter of weeks and I grew to become so exhausted and began to get a sore throat – the sort of sore that retains you from sleeping at night time as a result of it seems like your swallowing knives. My glands had been swelling on and off. I believed I used to be simply preventing a chilly. For months. In that point my joints began to harm. Then round 4 months after that chew I awoke and couldn’t elevate my arm. One other month glided by and extra joints had been affected after which the opposite arm as nicely.
From there it was a hurricane of bizarre signs that got here with out rhyme or purpose. So much match into the rheumatology class, in order that was the primary of the specialists I noticed.
Quick ahead to summer time 2015 once I began to have chest ache and learnt that I developed a coronary heart murmur. By this level all of my joints had been affected. Some days my TMJ was in so horrible I needed to resort to liquid diets; smoothies that had been jam packed and nutrient dense as a result of I couldn’t open my mouth to take a chew of stable meals. I truly spent Christmas Day 2015 alone, my household was in Arizona and my husband drove to the town to select up his dad and mom from the hospital. I had a pair invitations to dinner, however my jaw was locked shut. I did what any regular 20-something would do and supplemented Christmas dinner with mimosas. That’s “regular”, proper?
I used to be in excessive ache. I grew to become so weak and immobilized that I couldn’t get from the sofa to mattress with out being carried. I couldn’t elevate my very own head to swallow treatment. My husband brushed my tooth. Then one night, if my reminiscence is appropriate it was across the 20th of January, 2016 I attempted to face up from the sofa and my legs wouldn’t transfer. Regardless of how a lot I willed them to shuffle, slide – something. They weren’t responding.
We noticed numerous docs, each domestically in
Northern Ontario and Manitoba – and we additionally travelled to the Mayo Clinic, determined
for solutions. None got here. In February 2016 I used to be hospitalized for 4
or 5 days whereas they did extra checks, nothing got here again that helped with a
analysis. I had a bone marrow biopsy,
and nonetheless nothing. Then Mach 7th
rolled round and we had a solution. Lastly.
How did we discover Igenex and ship a blood pattern
We had been greedy at straws by this level.
I had so many checks: CT scans, MRIs,
echocardiograms, EKGs, xrays, bone scans, the listing goes on. Plus, I’d been
examined domestically for Lyme Illness, and it was unfavorable. At the moment, we hadn’t
achieved analysis on Lyme Illness and I didn’t know that the testing we use in
Canada can typically give a false unfavorable.
The night time we received residence from the Mayo Clinic
my husband was looking on Google and he discovered a couple of tales from different
folks’s blogs about Lyme Illness. It sounded too acquainted. We rented the
documentary, Underneath Our Pores and skin, from iTunes and whereas I watched it tears fell down
my cheeks. The documentary adopted a
few folks, and watching one of many ladies was like wanting within the mirror.
Items of the puzzle began dropping down on us like a hail storm. This made
sense, it needed to be it, particularly when nothing else was identified over the
final two years.
Extra studying led us to Igenex. We figured
at this level it couldn’t damage to attempt, I’d had sufficient blood attracts – what was one
At this level I learnt concerning the Horowitz
Questionnaire and I scored ridiculously excessive.
Whereas I waited for the lab outcomes I beginning researching totally different LLMDs,
booked an appointment after which the journey actually started.
I needed to stabilize a bit earlier than beginning IV antibiotic remedy in June 2016. It took three months to achieve a correct dose of lyrica and lamictal to assist with the burning neurological ache I had. The course of IV antibiotics was estimated to take 9 months. Quickly that doubled, and I used to be into my 18th month of treatment-at that time I had sufficient. I made a decision to tug the plug. Actually. I requested to be referred to an area surgeon to take away the central line that was put in whereas I used to be in the USA.
There have been a handful of setbacks all through
my IV antibiotic remedy. I’d get forward. Then fall again. It was a by no means
ending up and down cycle that fluctuated just like the inventory market.
After I referred to as it stop with IV antibiotics (you possibly can examine it right here), I took a leap of religion and went to a Purposeful Drugs clinic in Switzerland. That have itself was stuffed with ups and downs, and I documented the entire thing in a collection of weblog posts:
My Evaluation at Paracelsus, Week One in every of Therapy, Week Two- Half One, Week Two-Half Two + Complete Physique Hyperthermia, Week Three- Half One, Week Three-Half Two, Fourth and Closing Week of Therapy
Though my first expertise with a pair docs on the clinic didn’t meet my expectations, I discovered myself attending to know and belief one in every of their different docs who continued to stay with me by the next months, by common e-mail and telephone contact. Eight months after my first go to we had been flying again once more. I additionally blogged about my second go to to Paracelsus in these posts:
My Determination To Go Again to Paracelsus, My Second Journey-Half One, My Second Journey-Half Two
In the event you learn my final weblog about my expertise with having a port-a-cath positioned you would possibly keep in mind me telling you that I went a few months with out infusions. My veins constantly collapsed. Stick a needle in my arm they usually’d deflate and disappear. By the point I restarted infusions in January my physique was going by what appeared to be a by no means ending flare up.
To summarize January and February 2019 all I must say is that it was hideous and horrible.
I used to be fortunate to have two days out of the week the place I wasn’t overwhelmed fully by signs. I had a few of the worst joint ache but, even the slightest contact on my knees or elbows despatched fireplace lacing by my veins. A brand new, unusual symptom got here up… and I nonetheless don’t know precisely what it’s – whether or not its tendons or we must always simply chalk it as much as mushy tissue – I get these raised, hardened areas throughout my ankles and behind my knees. Additionally they flip actually crimson and trigger lots of ache, plus prohibit fluid and blood move.
One morning, after laying aside washing my hair for a bit of too lengthy I knew I couldn’t keep away from it any longer. It is a pretty regular sample. I wash my hair on days when my port shouldn’t be accessed, I may nonetheless tip my head over the bathtub to clean it – however it’s little bit of a trouble. I principally must resolve primarily based on how I’m doing if, and when my hair goes to get washed… and please, don’t get too grossed out. My hair nonetheless will get cleaned each 4-6 days – even when meaning asking for assist.
Anyway, one morning I made a decision I wanted to get the entire hair state of affairs out of the way in which, so I rallied up all my vitality to clean, dry and elegance it. Sure. Even type it. My entire life there has at all times been one thing about my hair; I may very well be carrying sweats and haven’t any make up on (which can be regular) – however I at all times really feel higher when my hair seems to be half-decent. It is a trait I little question inherited from my nice gram, who had her hair achieved weekly up till she handed away at 90. Each time she was admitted into the hospital, she’d at all times ask us how her hair regarded, and we’d at all times be making contact ups with a curling iron for her. I suppose if I’m fortunate sufficient to have one other 60 years on this planet, even when I’m not at all times lucid like her – I’ll nonetheless care about my hair.
Let’s return to this story about washing my hair. As I get to the purpose of plugging within the iron and styling it, all whereas ignoring the ache in my ankles and toes I lastly rolled my pant legs up and regarded down. I knew I pushed myself method too far. My legs had been mottled. In the event you aren’t certain what meaning, google it.
No flipping marvel they damage. I received myself again into mattress and raised the foot of my mattress up as excessive because it may go, with an additional pillow stacked below my legs for extra top. It took a couple of hours to recuperate from this to the purpose that I may stroll to the kitchen and get myself meals or a drink. If I stood for longer than 5 minutes it could begin once more. This one symptom specifically has been taking place no less than 4 to 5 days every week.
Then there was the opposite “regular” stuff that makes an individual really feel depressing, I used to be having lots of points with the tendons of my shoulders once more, making it not possible to alter into my PJs alone. I’ve additionally began to develop nodules on my tendons in my forearms frequently. These trigger fairly excessive points with mobility and ache all the way in which all the way down to my fingers. I had situations of synovitis (irritation of the synovial membrane, which is painful, particularly when the joint is moved) prior to now however recently they appear to be very common.
To place the cherry on high, this occurs predominantly in my proper hand – and I’m proper handed. Think about making an attempt to carry a pen and write when you possibly can barely maintain a pen.
It’s fairly regular that once I’m not doing and 5 pm rolls round I are usually in some excessive ache of the neurological type. I do take Lyrica and Lamictal for neurological ache, and general it really works – besides throughout the flares. In the event you’ve by no means skilled it, I hope you by no means must. It seems like fireplace and sharp items of glass are flowing by your physique – burning and scraping it from the within. It feels such as you’ve rubbed your pores and skin uncooked with sandpaper, and even the blanket laying on high of you appears to harm. Getting a great night time sleep is not possible like this, which propels the signs to worsen whenever you’re not getting restorative sleep.
So – principally, issues had been actually terrible in January and February. This additionally caused a giant shift in my temper that I hadn’t skilled in these previous 4 years. I used to be extraordinarily depressing. Mentally and emotionally, I couldn’t deal with these unhealthy days anymore and issues received darkish.
It isn’t precisely straightforward to inform the world this a part of my story – however I believe it will be significant.
All of my weblog posts are inclined to have a silver lining and mixture of humour to them, just because that’s my persona. I’m pretty straightforward going, light-hearted and shamelessly sarcastic.
However it’s altering. This modification is regular for lots of people who’re affected by a power sickness over a protracted time frame. The rationale I’m sharing this a part of my story is for different folks battling this illness who’re studying my weblog. Lots of what we see on social media could make it appear like everybody, even these with a power sickness have their $h!+ collectively 24/7 however it’s hardly ever true. And it’s a-ok to be trustworthy about that. And it’s greater than okay to hunt assist for it too.
I’ve been attending our native psychological well being program because the summer time of 2017 and I’m so glad I lastly referred to as and referred myself to a counsellor. However in 2019 issues modified, my counsellor took on a brand new function inside the program and I used to be moved to another person. I’ve to say that I’m fortunate to stay in a small city and I already knew a bit about my new counsellor and I knew we’d be a great match. Discovering somebody you possibly can discuss to and really feel comfy with isn’t at all times straightforward – however I’ve to let you know, when it’s in a setting the place the individual is educated and educated for this, it’s truly straightforward to open up. If I had been to attempt to sit and have the conversations we do with a stranger on the road I might worry their judgement, pity, and all of these different issues we’d count on once we unload all of that psychological and emotional baggage.
Speaking to somebody professionally is totally different
1) they’re normally on this job as a result of
they’ve chosen to this profession path as a result of they wish to assist folks by
2) they’re unbiased and nonjudgmental,
3) you don’t must really feel responsible speaking
about your self, that’s the goal of your time with them
At my ultimate appointment with my final counsellor I wished one thing to work on outdoors of my appointments. Speaking whereas I used to be there was nice and useful, however I felt like I used to be slipping right into a darker place. I used to be dropping elements of myself and shadows had been slowly creeping in. She gave me a “Power Sickness and Despair” workbook and I believed it wouldn’t apply to me. Was I depressed? Nah. I actually doubted it. That booklet sat round for a stable six weeks or extra earlier than I cracked it open on a type of days I used to be laying in mattress with my toes raised up.
It opened a can of worms. That workbook was a slap within the face. But it surely was a great factor, and I’m so glad I lastly gave it an opportunity. It has been a pair months now that I’ve been clawing my method by this workbook and I do assume it, with the assistance of my counsellor has been extremely useful.
We’ve give you a brand new technique that actually works for me. On these days the place I really feel emotionally and bodily horrible I’ve some obsessive, intrusive unfavorable ideas. I cling onto unfavorable issues, I really feel like I wish to be offended. I wish to verbally assault somebody. Sure, I do know that isn’t going to unravel my issues, and I’ve sufficient self consciousness to not take it out on anybody else.
What is that this technique?
I write down my ideas, I fill a web page with all of the ramblings of my mind. Subsequent I take a look at all of these ideas and I underline the undisputable info. After you do that you’ll typically see you can fill a whole web page of ideas however only a few of these issues are info. Why I’m worrying concerning the “what ifs”? We’re additionally figuring out my “catch” phrases and I’m making an effort to exchange them with a extra constructive self-talk.
I’ve discovered the final two weeks that my temper has been higher, even when I’m in a lot ache I truly cry.
Crying as a result of it’s that insupportable shouldn’t be regular for me. I can normally work my method by it, but it surely has been so unhealthy recently that I cry. There are days I’m wondering if I can do that anymore. I’m wondering if I’m prepared to only hand over. I don’t wish to preserve seeing docs. I don’t wish to journey and spend our cash on physician appointments and drugs. When I’ve day after day of horrible ache and I’m unable to do the only issues for myself, my thoughts goes again to the place it was earlier than my analysis; when it’s simply so bloody arduous that I might completely settle for falling asleep one night time and this illness simply taking me. A minimum of it wouldn’t damage a lot anymore.
However that isn’t what I need. I need my life again. I do know even on these unhealthy days that it simply isn’t in me to surrender. I’m not prepared to surrender. Not but. Most likely not ever.
Why have I been so sick once more these previous 4 months?
I ran out of my infusions units. These make the world of distinction for me. I attempted to get them organized from my clinic in Switzerland to search out out that they may now not ship to Canada due to “points with customs”. As a substitute, my husband’s cousin (who lives in Switzerland) picked up my IV units and mailed them to me. They’ve been sitting at Canadian Customs for 5 weeks and three days whereas I worsen by the day.
Is the problem with the medicines in these IV units? I extremely doubt it. I’ve had them mailed a handful of occasions in 2018 with none concern. As a substitute, I believe customs is simply backed up and sluggish. We’ve gone as far as to satisfy with our native MP (member of Parliament) to hunt his help, however up to now these meds nonetheless haven’t moved.
That is the explanation I’m going again to Switzerland. I’ve regressed loads with out meds and it seems to be the one method I’m going to entry them.
Our purpose for this go to in accordance with my favorite physician is
“The crux of your care is targeted on eradicating “critters.” Naturally, your vitality will rebound healthfully if you’re not mentally and bodily affected by illnesses. Therefore, critter extermination”
Paracelsus now gives excessive hyperthermia. Induced fevers that surpass 41C – which I nonetheless haven’t had the chance to ask how one can keep away from mind injury and strokes at this temperature, however I do know this specific remedy has been round for years, so clearly they’ve figured it out. To do any such hyperthermia you’re utterly knocked out, identical to having surgical procedure. My first day on the Clinic is in 4 days, so quickly we’ll see what the plan is and like typical, I’ll preserve a journal and share it right here with you – do you have to discover it attention-grabbing sufficient to learn my painfully lengthy weblog posts.
In the event you’ve made it this far, thanks for sticking with me.