Lyme Disease

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Possible MS patient?

Hi, my name is Mandy I am 34, and a kindergarten teacher. I have been having crazy random symptoms or things happening to me for the last few years and nobody seems to be able to explain it. I've been overlooked based on my age many times. I got a pacemaker at 30 for SSS, hypothyroidism, alpha-gal syndrome, lyme disease, flushing (that derm determined is rosacea), blepharospams where my eyes won't open in the morning and as of yesterday I have been diagnosed with glaucoma and thinning of my RNFL. My optometrist wants me to have a doctor screen for MS as a possible cause for my varying symptoms. My last dr... wouldn't take me seriously and when some lab was 1 point in the green, would call it normal and dismiss me without helping me continue to find out what was going on. It has been very stressful and caused a lot of anxiety and doubt in myself. I just wondered what other peoples journeys have been and what kinds of symptoms you have. I wrote out two pages of random symptoms I've been having and feel kind of crazy. Any support, or insight is so appreciated.

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A Poe-m For Halloween

Inspired by the haunting cadence of Edgar Allan Poe's "The Raven," this reinterpretation attempts to echo the very real struggles faced by our chronic illness community. In the bleak months to come, I wish for you, my fellow Mighties, that the coming year gifts you with many spoons, and that your inner light continues to prevail wherever darkness may lurk 🖤

Once upon a midnight dreary, while I pondered, weak and weary,
Over many a faint and symptom of forgotten health lore,
While I nodded, nearly napping, suddenly there came a tapping,
As of someone gently rapping, rapping at my chamber door.
"'Tis some visitor," I muttered, "tapping at my chamber door;
Only this, and nothing more."

Ah, distinctly I remember, it was in the weak December,
And each separate dying ember writhed ghost like upon the floor.
From my books surcease of sorrow — sorrow for my lost health's morrow,
For the rare and radiant treasure of the health I had before —
Nameless here forevermore.

And the silken, sad, uncertain rustling of each purple curtain
Thrilled me — filled me with harrowing terrors never felt before;
So that now, to still the beating of my heart, I stood repeating,
"'Tis some visitor entreating entrance at my chamber door;
Some spectral figure entreating entrance at my chamber door;
This it is, and nothing more."

Open here I flung the shutter, when, with many a flirt and flutter,
In there stepped a stately Raven, sent from Odin's vast halls of yore.
Not the least greeting made he; not an instant stopped or stayed he;
But, with the air of a lord or lady, perched above my chamber door —
Perched upon a bust of Hippocrates just above my chamber door —
Perched, and sat, and nothing more.

"Art thou Huginn or Muninn?" I inquired with voice thinning,
Seeking wisdom from the raven, as in ancient Norse lore.
“Though thy crest be shorn and shaven, thou,” I said, “art Odin's haven,
Ghostly grim and ancient Raven wandering from the Hellish shore —
Is there hope or respite on the cold and distant Hellish shore?”
Quoth the Raven “Nevermore.”

Then this ebony bird beguiling my sad fancy into smiling,
By the grave and stern decorum of the countenance it wore,
“Though thy crest be shorn and shaven, thou,” I said, “art no cowardly craven,
Ghastly grim and ancient Raven wandering from the health-filled shore —
Tell me what thy lordly name is on this Night’s Hellish shore!”
Quoth the Raven “Nevermore.”

Much I marvelled this ungainly fowl to hear discourse so plainly,
Though its answer little meaning — little relevancy bore;
For we cannot help agreeing that no living human being
Ever yet was blessed with seeing bird above his chamber door —
Bird or beast upon the sculptured bust above his chamber door,
With such a name as “Nevermore.”

But the Raven, sitting lonely on the pallid bust, spoke only
That one word, as if his soul in that one word he did outpour.
Nothing farther then he uttered — not a feather then he fluttered —
Till I scarcely more than muttered “Other friends have flown before —
On the morrow he will leave me, as my health has flown before.”
The bird responded, “Nevermore.”

#MightyPoets #DistractMe #ChronicFatigue #Spoonie #Fibromyalgia #MyalgicEncephalomyelitis #Endometriosis #HypothyroidismUnderactiveThyroidDisease #WarmWishes #Insomnia #Migraine #Grief #Lupus #LymeDisease #IrritableBowelSyndromeIBS #MightyTogether #MyCondition

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What’s My Name Again?

The brain fog struggle is real! There are also those annoying moments when you find yourself describing what car keys do, but can’t actually recall the word ‘keys’ in the moment 🤪

#DistractMe #ChronicFatigue #MyalgicEncephalomyelitis #Fibromyalgia #ChronicFatigueSyndrome #AdrenalInsufficiency #Lupus #LymeDisease #PosturalOrthostaticTachycardiaSyndrome #MyCondition #Headache #Migraine #Insomnia #SleepApnea

51 reactions 9 comments

I bought a cane

So I bought a cane to help me walk when I’m super fatigued. I have Lyme disease and some days I can’t even get outside and I really want to get outside everyday and take a walk. It’s a challenge for me to even get downstairs for long. Everything expends so much energy. I also may have POTS so I get very dizzy and faint a lot and can’t stand long. So I thought a cane might help. But I feel like guilty and self conscious about using one. And a little in grief that I’m sick enough to use one. My brain keeps telling me like “oh you don’t need one, you’re a fraud.” It’s probably just internalized ableism but still I feel so guilty. I still can walk without one but I just wanted something to help me when I’m so fatigued.

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Hello! I’m Officially Your New Co-Leader!🥳🌻🥰

My name is Wendy, and I have been an active member on The Mighty for a few years now. This is my first time being a group leader, and I am so excited and honored to serve in this capacity.

I am a positive, vibrant person who lives with M.E./CFS, fibromyalgia, Epstein Barr Virus, hypothyroidism, and multiple chemical sensitivity (MCS). I have been sick for 20 years, but my illness progressed throughout the years, to where I could no longer work, and now it’s been five years since I worked. As you well know, living with chronic illness changes everything, but I insist on living my best life everyday and enjoying what I can!

I love movies, hanging out with family and friends, unique tasty foods, working on my YouTube Channel, gardening, rich conversations, and being creative!

I want the best for us all and wish you peace and love on your journey!🌻💞Wendy #MyalgicEncephalomyelitis #Fibromyalgia #ChronicEpsteinBarrVirus #LymeDisease #MultipleChemicalSensitivity #HypothyroidismUnderactiveThyroidDisease #MentalHealth #ChronicIllness #CheckInWithMe #DistractMe

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I received some more bad medical news today. I wasn't mentally or emotionally prepared for it and I need time to process the information. I'm terrified, devastated and it put me into an immediate depression.

My chronic Lyme Disease seems to have never gone into remission, like I thought. I'm still infected with Chronic Lyme and Bartonella, assuming Rocky Mountain Spotted Fever too, but that one wasn't tested. I have a lot of unresolved trauma from treating my Lyme disease, and suffering for years.

It took two years to get that diagnosis when I was in my early 20s, having insane symptoms and that's when the suffering really started. I was 21. I started treatment at the age of 23. It was hell, the treatment was intense, painful and made me much sicker. I didn't have the long list of diseases and complications that I do now. I was also much younger and had more energy and spirit then.

Going through that again, with the body and physical ailments I have now, it's seriously frightening. I'm devastated that I didn't find out sooner. I knew that Lyme Disease caused a massive amount of damage in my body, I didn't know that it was still doing that to this day. It's a ton to process for me. I was 24 when my treatment ended. I'm 38 now. I'm feeling hopeless and I have already been tired of fighting. This body doesn't seem to want to live. It's very hard now, the idea of making it harder isn't fathomable to me right now.

I stopped reacting to new diagnoses a long time ago. The last time that I was truly afraid and shocked was when I had a Pulmonary Embolism in 2018. I survived. They are normally deadly. I remember getting the call 6 months later that I had a rare autoimmune blood clotting disorder and a genetic clotting disorder. Blood thinners for life. I didn't react. I literally laughed on the phone. Not because it was funny or not serious, because I couldn't take it anymore but I also wasn't even surprised that something else was wrong. Another one to add to the list.

I had internal struggles when I thought I had lung cancer in 2021. But I knew that I would fight it and I had a plan to be strong like I always am. 5 months later, I found out that it was Sarcoidosis. Also rare and can be deadly. It's a terrible disease. Add it to the list. Later in 2021, Autoimmune Polyneuropathy all over my body - small and large fiber nerve damage everywhere. I was just happy to get it over with and have it in writing finally, rather than my doctors and I just assuming that's what it was. I seem to get a new diagnosis every 12 to 24 months. I've grown used to it.

Today was different. I'm at my max. I just had my nerves burned from my spine a week ago. I'm still in recovery from that. My doctor gave me steroids while I was under without my knowledge or consent, knowing I'm allergic. I don't know why this is my life and why I was chosen to live in my own personal hell since childhood. I started crying while the doctor was talking about treatment options. The idea of going through that again is what set me off. I told her that I barely want to keep fighting now. I don't want to make my life harder.

Yes, I get depressed very often in the last year. I'm overburdened and overwhelmed. I'm angry and I'm sad. I am scared. I live one day at a time. Making distant plans is hard for me. When I get my handouts emailed to me for my intensive trauma class 24 hours prior, I don't even look at them. I don't know what tomorrow brings. I'm here today. Everything that is planned must be in my calendar or it's not real to me.

I hold onto those bit of love that I have in my life. That's what keeps me going. My animals and the important people in my life that share love and compassion with me.

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Ways to make friends

I have social anxiety and a chronic illness so I don’t leave the house unless it’s a family outing. I’m 19. Not in school. Basically I’m disabled. I’m so lonely. I have some online friends but still I feel so alone as they’re busy a lot. Anyways any ideas on how to make friends within my comfort zone? I won’t just overnight start going to a social group. But within my limitations I need a way to feel less alone. Also I don’t like using social media it makes my anxiety worse. #LymeDisease #SocialAnxiety #Loneliness #Depression

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