posted
I'm trying to come up with a flowchart describing my experience as a Lyme patient, and to an extent, others' experiences.
There's a bit of dark humor in it, and it's NSFW nor is it safe for children due to language. (I also do not really advocate drinking a bottle of scotch to numb pain - it is an intended statement of 'I wish I could get rid of this d*** pain'.)
Does it cover the gist of the Lyme patient experience for you in terms of the medical/fatigue side of it? Is there anything I missed that I should include?
I'm in a lot of pain the past few days. It took a lot of work to do this, but sometimes trying to concentrate on something can help distract me from the pain.
fflutterby
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posted
Loved it.
Some other symptoms I suffered with.
~ Burning neck pain
~ Brain Fog (Why is the world moving so quickly? I cannot seem to catch up, wtf?)
~ Left knee, right knee, tomorrow left elbow. What does this bacteria do? Put the symptoms in a bag and choose a different one whenever it is feeling particularly evil.
~ Is my heart exploding out of my chest > Cardiologist "You are as healthy as a bear." yeah right!!
~ My back is killing me! Must be age creeping up on me! At 43 Not !!!!
~ Why am I so angry? I feel like a monster today. Is this PMS? Umm think again, Sweety!
LOL I am sure I could think of more but I gotta cook dinner.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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Thanks for the feedback, glad you loved it.
This chart is more for the medical run-around/burnout/research side of having Lyme. I am thinking of making a second one about symptoms and emotions.
If you think of more, please let me know... maybe your points can go into a second chart if not another version of this one.
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BoxerMom
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I love the 'yes, you poor b***ard' arrow after you get dxed with co-infections.
momlyme
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I hate the fact that it never ends... there has to be an end!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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It hasn't ended for me yet... but if you want to be optimistic, think of being in the "Time Passes" box = remission?
I'll think about it. There are many mysteries about Borrelia...
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Beautiful display! you need more expletives-damn't!!
Just curious, what time frame are we looking at here? I know for many who have been suffering for way too long- it's not easy to pinpoint.... as in the case of my husband recently posted on "Agoraphobia"
I/we would be more than happy to help you compile data- we have more than we know what to do with!
Numbness-tingling- rt hand/arm radiculopathy arm progression: rigidity, loss of finer motor coordination/movement
chronic fatigue
depression/anxiety/irritability (very)
joint pain/shoulder- granola crunchy-articulation
agoraphobia (even though he won't admit it ;-)))
hip pain/joints, etc...
A few more to add- however, even more problematic is his recent Dx of MS, hence the SEA OF SYPMTOMS!
Good luck with your graphic art!
-------------------- Change is inevitable Posts: 77 | From France | Registered: Jan 2011
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Thanks, clueless! (Should I or shouldn't I ask for the reason behind that username?)
I knew some expletives had to be in it, but I didn't want to litter the chart with them as it would make it even more crowded to read. But there was no way I could avoid them given the situation.
Time frame? I don't know. See, that's the part of the problem, isn't it? Some people say they've been infected in the womb, and my chart doesn't even account for that situation. Some people have been infected for decades. Some just got infected a few weeks ago. I'm trying to cover all of that.
Cure is a problem because we don't know if people are permanently cured. Hopefully they are. I simply don't know yet, even as scientists have said people can be, and LLMDs have said you can be. I think the issue of coinfections and being infected with more than one genotype of borrelia has a role in the persistence, but this is speculation and I can't tell you yet... I'm hoping to get more info. about it as time goes on.
Thanks for the symptoms run-down. I might include them in a patient symptom-emotion chart.
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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METALLlC BLUE
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I would say that sums it up. Including lack of empathy and understanding of family would make it even more hilarious in a "dark humor" sort of way. I.E. Do family members and "significant others" understand? No, get divorce, lose everything, fail at life, and be systematically alienated from people who were once seemingly intelligent and appeared to care for your well being.
Yes family members and significant others do understand: Good for you, ......give it time and the answer will eventually become no when they tire of your complaining.
*lol*
I know, it seems cynical. It paints a picture that many seem to feel though.
Nice job.
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