Aaah, the trials and tribulations of surviving Lyme Disease....in a post?-global pandemic soon, as we live and breathe...been since March of 2020.
My heart goes out to those who have contacted me about their struggles with Lyme, or someone they know who is struggling or who already lost the fight...
While this isn't very exciting reading, maybe it will help someone somehow.
Peace and optimal health to you and yours,
:) Lisa
May 6, 2021
Spring has Sprung - in May of 2021 ~
And what a year-plus it has been! (Yes, it's taken me over a month to get this finished.)
The BEST:
~My family stayed relatively healthy. Don't think we had CoVid19 (not sure, tho, since Rob and I were both sick with a flu-like virus last Dec. '19 and March '20, respectively).
~We have continued to have jobs, and things could certainly be much worse. It also helped to have some assistance from the Department of Unemployment when in transition from my full time job as a case manager (when the day program closed - due to CoVid, and staff was temporarily placed in group homes, and then people contracted CoVid and some died in the homes).
~My work switched back to contracted 1:1 part time case work in December (as I'd done for over 25 years when self-employed, pre-Lyme). This time, in students' homes and with families. Very grateful for meaningful work.
~We've been able to pay our bills, and also have MUCH MORRRRE time together at home - with Clara working long hours from her bedroom since March 2020, and Graham glued to his multi-screened computer set up in his room. oy. (This was an extension of students having to become remote and then a hybrid model of both in-person and remote for schooling. What a year-plus to be a student graduating from high school! They didn't get much of a junior year after the winter break last year, and senior year has been....different.)
~Finally went to two online concerts! That was also different, but better than no concerts. Miss that!! Can't believe Broadway has been shut down for over a year. BROADWAY!! Got to see my friend, Mitch, do online costuming presentations, since the CoVid shutdown of the Metropolitan Opera in NYC, where he works.
~Going to Boston this weekend with Clara for Mothers Day - will get to see her work place, and wander around: the North End, the Wharf.... (She left shoes there last March.) We will see what's open. Looks like things will finally be open for the summer? (As long as things don't get messed up again. Surges in CoVid after superspreader events, such as trump rallies, and states that didn't honor any social distancing or mask use. Really something that anti-vaxers and antimaskers have died/are dying...)
~I've had both Pfizer vaccine doses for the CoronaVirus. (Rest of family to be fully vaccinated within a week.) I was very hesitant because of past problems with flu vaccines, but also have asthma, and didn't want to risk getting a potentially fatal respiratory disease, and was approved for Phase 1 of the vaccine because of my work. Still took many, many weeks to get an appointment for the shot.
~Governor Charlie Baker has done a pretty good job at the helm for Massachusetts during the GLOBAL PANDEMIC (that the US President dismissed, and even obstructed the health and well being of the citizens. In the beginning, states were punished for not supporting him, i.e. no PPE (Personal Protective Equipment), so Baker had it flown in with the help of a New England Patriots jet. (And the fiasco went on and on and on...can see in The WORST, to follow.)
~New President, Joe Biden, in office. (What a challenge, as Obama had, coming into such a mess for the country.)
~Kept a journal for 2020, listing the three best things of each day. It often included simple things, such as the sunrise or sunset, or being able to take a walk, or being on this side of the ground. :) Usually included something about being outside (love the beach! the salt air!), or meaningful time with other people. And LOVED having my new screenhouse up for the warm months last year. It's going up soon for 2021.
~Spent birthday again in the respite of the hot tub and quiet time at friends' home by the ocean. :)
~Some comedy is always good - the laughs are good! Have tickets to see Kathleen Madigan in Boston in September..... :)
~At annual checkup my blood pressure was so low (for me) that they checked it twice. A good thing?
~ At a plateau of sorts for the past year and a half - flareups resolve, some shorter some longer - like injured shoulder from shoveling snow took two months to resolve.
~Twitching eye issue at time of 2020 annual resolved with lion's mane - a mushroom that I take intermittently in powder form, and then Clara started to grow it. It's for brain health...regeneration of cells/neural connections? (disconcerting that the eye twitch switched for a while from outer to inner eye - to the iris or pupil? and would distort and wiggle my vision each time. No, I didn't go to the doctor. What would they have done? Been there, done that.)
The WORST:
~Fibromyalgia Flare Up 3/20 - after over doing it with 2 mile walks at work (when placed at a group home for start of CoVid shutdown of our day program) - all the FM trigger points: lower back, mid back, upper back, shoulders, chest (feels like pleurisy), head, knees (left knee with something snapping in it when walking)...
~Horrible cough and flu in 3/20 - with no support from spouse. Did I tell you this is how I will not play out my senior years? :(
~Flare ups with eye and knees last January of '21...also came from overdoing it (leading group in an abbreviated Qi Gong 'class' on a beach), and exposure at a household for work...took prednisone (but saved last 10 and took them later when being tested for CoVid/having a flare up. Dr. didn't think that would be enough. It was. I'm sensitive. Don't want to overdo it with prednisone.)
~Learned that it's not good to have ice cream with sugar substitutes. About three hours after a no sugar vanilla raspberry swirl float with Diet Coke, I pooped 8 times in 45 minutes - so much my ass bled. Clara looked it up online. Has to do with sugar substitutes. I forget the term. Oy.
~My ears have been ringing for more than a week. Sometimes it's more of a buzz in my head. Since the CoVid vaccines.
~Over a half of a million people have died in the U.S., while the president at the time mocked the use of masks, etc., and suggested insane cures for CoVid such as ultraviolet radiation and ingesting lethal chemicals.
~My brother-in-law's mother, Ginger, died of CoVid in the winter. :(
~Special people at church died of CoVid (Winston, Faye) early on in the pandemic. :(
~Ruled by a president that was a clown, at best, and an evil dictator at worst, e.g. turning his back on the suffering of millions of U.S. citizens, abolishing policies that supported the Americans on whose backs this country's wealthiest have made their billions and billions, and even inciting a riot on the U.S. Capitol in Washington, D.C. when he couldn't accept the Presidential election results that he insisted others accept when he won, etc., etc., etc. - challenging basic human rights and democracy, just to be in power. And his 'party' has very, very few people willing to challenge the insane rhetoric and abuse.
~Suicides...
~Brief job as residential program manager at a house for BAMSI...Loved the residents, but the middle and upper management made for an awful job, all in all - trickle down effect to most of the house staff - a few exceptions were awesome though. Sad to have to make the decision to leave - for my health. My supervisor said she understood - then terminated me with no notice and no specific reasoning - over a week after I had given my notice, and also after had been 'on call' for a week for a half dozen houses (on top of the Full Time hours+). I was the 8th person in that job in four years. Tells you something... They just chew up the staff and spit them out. (My boss wanted to know if I wanted to work as relief staff when I left. ?! This is what they do, over and over, with residential management staff...)
What CONTINUES:
~ Daily regimen of supplements, in my weekly breakdown for Sun through Sat:
Vitamins B12 & D3 for immune system, Cat's Claw for brain health, Astragalus for respiratory health (can't find Astra 8 through Health Concerns anymore/got back ordered during the CoVid Pandemic), so substituted Womens Balance from Health Concerns/blend of multiple barks, roots and herbs for general health, 1/2 tab of RX Singulair for asthma, OTC allergy pills for the spring (and beyond?), OTC ibuprofen for inflammation and joint/head pain, turmeric on foods/anti inflammatory, garlic as natural antibiotic (not daily, but regularly), hot sauce for allergies and sinuses, gargle with pickle juice...
~ Regimen also includes:
* Get enough sleep (still up twice each night - but seems to be ok/enough)
* Drink enough water
* Teas...(probiotic and ginger, detox, throat coat, sleepy time/sweet dreams, ... not all at at once, but do like to have more than one at a time...)
* Minimal alcohol, caffeine sugars, dairy (anti-inflammatory diet). Weakness still for me is carbs - which metabolize to glucose or sugars, so try to minimize the white flour carbs at least...)
* Vocal Toning at night - so that brain waves calm and don't turn into brain explosions (jolting and hurt - a little concerning...precursor to stroke?)
* Qi Gong - also before bed for the same reason - calms the gamma brain wave activity, and coordinates across the corpus callosum of the brain for the body's internal activity.
* June note: Have been able to minimize the need to tone and the Qi Gong in the evenings since getting the CoVid vaccines...coincidence? (After being an ongoing issue for a very long while, post-Lyme.)
~ Daily quiet, whenever I can.
~ Daily efforts to at least take a walk. (Tried to increase physical activity recently with YouTube low impact videos...my knees got worse, and my ankles...had twisted my left ankle after second CoVid vaccine - tired - stepped down off old barn slab onto uneven dirt under leaves - and I was down! Heard a big crack. ugh.)
~ Limited extracurricular activity. But this is mostly due to the pandemic ..... Tho still can't do too much. Tried to dance along to dance videos on YouTube - but it messed up my knees - because of repeated switching of directions to do the moves. Really miss dancing!!! Danced jazz, modern, ballet, tap, african, hip hop, broadway shows ... for over 25 years....
~ Pacing my work, so that can meet the obligations with enough stamina.
~ It's enough to cook, clearn, do errands, and the endless paperwork for the household and work....TRY to limit onscreen time for my eyes and brain - but have so much to do with home and day job.
~ Symptoms of concussion still - from SIX Years ago! - continue in some form:
Ongoing sound and light hypersensitivities - especially light,
Need to be in the moment for all tasks (challenge to multitask - everything takes longer/having to deal with much paperwork for son's college applications/end of year graduation stuff/financial aid and scholarship application stuff/new school paperwork stuff, day job, home policies, etc...),
Memory recall sometimes still challenging,
Some speech slurs still,
Visual agnosia still (can't see something right in front of me, if it's surrounded by other objects),
Light headedness (worse after the CoVid vaccines), and lose balance somtimes...
~ Vibrating fascia throughout my body - different places at different points different days. THIS IMPROVED AFTER THE COVID VACCINES that I had in March - also around the same time I had switched acupuncturists - coincidence? The new woman puts many more needles in my arms, legs, knees, ears, feet, head, hands and feet.
~ Ache in knees improved with new acupuncturist - but also more fatigued knees to start as well... seems to be improving some...(as I finish this post in early June).
~ Worst recently is the ringing ears - All through the night earlier this week. Seems to be a result of the vaccines, or the new supplement of Glutathione...trying to see if there is a connection. Will stop it again to see if it improves - again.
~ Have to limit time on screen (too many hours each day) oy. This is a challenge, given the many hours each day that I am on screen for my job, and home finance/policy stuff and graduation stuff, and also for my connection to the outside world (emails, social media - which I limit)...ended up that it was contributing to an impending ocular migraine...along with DECAF coffee - again, too much, even decaf has caffeine. Did I tell you I'm sensitive? :)
Whats NEW:
~ Acupuncturist who takes insurance. :)
~ Tried new supplements for glucose maintenance and glutathione, which I'd read also helped re: CoVid and SARS.
Stopped, though, because getting light headed and not sure if it was due to the supps or the first vaccine. Waited for weeks after second vaccine and then tried only the glucose regulating supp again...but still get light headed, so stopping it, at least for now. It had other ingredients, aside from the hintonia latiflora, which was the main reason that I'd gotten it for glucose regulation. Maybe the other ingredients were the problem?
~ CBD to sleep
~ Will try the glutathione again. Also reportedly helps re: CoronaVirus and SARS. (Saw in health magazine.)
~ Knees worse - especially the left. After recent acupuncture to address it (LOTS of needles in both knees), pain was better, but fatigue was worse. NEED TO LOSE WEIGHT!!
~ Skin flare up from wild parsnip (a yearly thing) - tx was clear aloe gel, topical antihistamine, epsom salts, minimal sun. It's like poison ivy, with blisters and rash, but a little less itch and a little more of a burn - leaving burn like streaks for a longer time. Learned that radiation from the sun activates the oil of plant on your skin, creating the reaction.
~ Helping with a friend and her mom at her house out of state. Special time together - have known since I was in elementary school.
~ Job with Pilgrim Area Collaborative Extended Services. So glad to have a job with them, and have the support of administration and colleagues. What a notion! (Big change from BAMSI.)
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If you made it this far, maybe something was helpful.
I know that there have been other things, but it's kind of endless.
Talk to you next year?
But feel free to message me on FaceBook.
Peace out,
Enjoy your day.
xoxoLisa
