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Greetings and salutations fellow hOomAns

Started by Quirkyhndl, December 27, 2019, 12:41:42 PM

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Quirkyhndl

 old man w-cane
Hello all, I am very glad to have found this site (while searching for FM info and vitamins). I think that, considering my current state, God had a very good reason for leading me here. I will post about that separately though. A little about me:

Name: Shaun (I use Quirkyhndl for everything, so feel free to call me Quirky either/or/both)
Age: 34
Married: Kristen (15 years and counting)
Children: Sydney (14), Eric (12), Aria (7), Clara (1)
Religion: Christian (United Methodist, raised atheist)
Home: Houston (born Seattle, WA. and grew up everywhere, including Brussels, Belgium)

Diagnosis: FM w/ all 18 spots, chronic migraines, severe keratoconus (going blind).

Work: Navy vet (2003-2008, Avionics tech), last 10 yrs went to school (G.I. bill ran out before I finished), security guard (failed due to FM), special needs therapist (failed due to migraines), apartment maintenance/handyman/contractor (failed due to all of the above). Working part time doing an online advertising research/evaul while I care for my toddler and work on my writing.

Hobbies: Outdoors stuff when I'm not broken. Reading/writing (fantasy/sci-fi/Christian), board games, stratedgy video games, all kinds of art but especially metal sculpting.

Purpose: To lead my family in the truth of the gospel of Jesus Christ. To encourage conversations with believers about the truth of the Way of Jesus as given us in Scripture (and the authority/authenticity of Scripture). To discuss ideas of God and faith with non-believers and those of other religions, especially our brothers and sisters of Jewish and Muslim belief. To pray continuously for the Church and our world (for real, I will pray for you, just ask.)

Glad to have found a community to share with. Life has been real tough this last decade.
i R a HoOmAn.

ronr

Welcome  Quirkyhndl - Quirky - Shaun !!! :shake hands:

Kinda like FiBro, don't care what you call it, it's all the same and still sucks.

Sounds like you have a few years dealing with this under your belt already.  What are you doing to attempt to control this besides the massage and diet?  And more importantly is it helping?

Feel free to ask anything because we have all dealt with the many varied forms of this for years.
Times are tough when "Happy Hour" is your nap.
My mind not only wanders, sometimes it leaves completely!

Quirkyhndl


Thanks for the welcome ronr, I appreciate it. I've been looking for someone to talk to that actually understands what I'm going through (besides just the Lord, great as he is, it's frustrating not have anyone around me know/understand/care.) Actually, I take that back, I have a sister in Christ at our church that has a similar chronic pain disease and she understands all too well.

Anyhoo, I have indeed been dealing with FM for a long time. I've been trying to find a way to share my successes (and my failures). There's probably a better area to give the full rundown, but I'll share the peanut shell version with issues and treatments:

~

FM muscle/tendon pain:
In the Navy I threw my back out repeatedly (to the point of being unable to move) only to be told nothing was wrong with me. Again afterwards working security, my legs/knees/hips got to the point where I needed two knee braces and a cane to walk and was in constant agony.

Treatment:
After being prayed over I put the cane down and asked God to do a miracle, knowing that full healing wasn't going to happen (more on that in future "Faith" post). I pushed myself through physical therapy that I had to work out on my own. Including, but not limited to: walking, isometrics, yoga. I found that VERY quickly my muscles and tendons would atrophy without constant, daily physical therapy.

~

Migraines:
This is by far the biggest problem and life change. The migraines got so bad they were almost constant (3-5 days out of every week). It was impossible to work or have a normal life and the pain was so bad I would pray for God to have mercy and let me die. Suicide has always been a difficult battle for me.

Treatment:
Thank God I had someone brave enough to tell me what I was doing wrong. I considered the "organic" crave to be a hippy fad, but my friend's advice lead me to do more research and I began to change my diet in drastic ways. It has taken YEARS of experimenting to find out what I can and cannot eat, but the migraines have been reduced to 2-3/month and almost always can be traced back to something I mistakenly ate thinking it was safe.

Fast forward to now: I try to stay with organic whole foods and cook most of my meals. I stay away from animal products and soy even if it "says" organic (more on that too). I drink oatmilk and eat fake Daiya cheese and have a mostly vegan diet, but it's the only way for me to survive.

I won't go into the blindness here, but if anyone has FM and is finding that prescription eyeglasses are not working anymore, please contact me immediately.

I've got years of stuff I've tried, and more that I need to implement (been too poor to take the vitamins I should be), but that's the basic stuff for now.



i R a HoOmAn.

looneylane

Welcome there are some amazing sources of information and support in this group so never be afraid to ask a question

foxgrove

Welcome to the family Quirky!  :welcomeani:

So... you've already told us a little bit about yourself... now for the hard questions... Do you like jello???  Remember, you're being timed on your response and the wrong answer might just jeopardize the safety of the entire population of Ashern,Manitoba!!!  (they're kinda touchy that way)

:lmao:

But seriously... welcome to the family, brother.  It sounds like you're not new to this situation.  Glad to hear you're taking your health into your own hands.  I don't think simply letting the doctor make all our decisions and doing our research really gives us the best run at managing this condition.  I like to think that the volumes of life experiences have helped many of our former "roommates" around here make positive changes in their lives that helped them get back on their feet.  They're likely busy handling life right now so I can't ask them, but you know what I mean.

Nice to have another man of faith around.  We work to keep things open and welcoming to people of all religions and we do find that having a faith to lean back into really helps a lot of them through the rough parts.  As a fellow Christian, I can honestly say that without my faith and more importantly, that personal relationship with my Father that I have, we wouldn't have gotten this far.  I'd have been dead and buried many years ago or the many times on the road getting here.  Seeking out a power greater than ourselves seems to be something we were just made to do.

I invite you to dig deep... we've got no secrets though many of us are cautious to open up fully due to worries of the way insurance or government might interpret it, potentially to our detriment.  We're always open to questions and love to help in any way we can.  I'd love to hear the details of your journey through fibroland. 

In any case, you're part of the family so grab a big comfy chair, sit back, kick your feet up, and know that you're part of something good.  All of us are here to figure out better ways of making it through our fibro journey with less pain and more happy times.  I hope that we can be part of making your days a little easier.  Be well, brother.  You're in the thoughts and prayers of many good people tonight.

Fox
Where God leads, His hand always provides
...so keep Calm and code on....

Foxgrove

Barberian

#5
Quote from: Quirkyhndl on December 27, 2019, 12:41:42 PM


Work: Navy vet (2003-2008, Avionics tech),

AQ or AE?

AQ I guess you're ok. AE... might take some work. I am a retired AM1 (AW) F/A 18's VFA 94, VFA 122 and AIMD NAS Lemoore

OH, and welcome aboard.


ronr

OK what do you have to say about eyeglasses not working. 

Mine are not nearly as bad as yours sound but my focusing has gone to crap.  Bi-focals help some but things still go blurred on me.  Actual prescription worsens only slightly but cataracts are increasing constantly.
Times are tough when "Happy Hour" is your nap.
My mind not only wanders, sometimes it leaves completely!

Robby

Yeah, I have been having a lot of trouble with mine lately. It's gotten so I can see the computer screen better without my glasses, except that without the glasses, the objects on the screen start to cover each other up. For instance on another site I frequent, there are ads on the right side of the screen, I have t lean over and look at the screen kind of from the side to see the text box, because the ads start to cover it. Or I start seeing double, with or without, and also with without, I have started to see little flashes of light dart across my eyeballs. They usually start at the center and head straight for the side. But, can start at one point on the side of my eyeball, and shoot to another spot on the outside of my eye. I got the no-line bi-focal, and never use it, I usually forget it's there, but it doesn't help that much anyway. Don't know if it's not the right strength, or if it's just my eyes. But that's how it is, I have to talk to my eye doc next time I go in.
/>----------
I will put you in the trunk, and help people look for you, DON'T TEST ME.

Quirkyhndl

Haha, thanks for the welcome guys, just getting back to this after my rant... Figuring out how to navigate these forums.

Quote from: Barberian on December 28, 2019, 03:24:42 AM

AQ or AE?


Thanks, shipmate, I was an AT actually. SH60B-Seahawk (man I miss that bird.), San Diego, Lincoln battlegroup.

Quote from: ronr on December 28, 2019, 09:54:56 AM
OK what do you have to say about eyeglasses not working. 

As for the eyes, I have severe Keratoconus (it might be something of a more common issue with FM than I realized). It causes the cornea to slowly degenerate, which then makes it fold up and become scarred. In the microscope my cornea look like someone took sandpaper to them.

Because the cornea themselves are so warped, conventional eyeglasses do nothing. I have to have a special type of hard contact called scleral lenses. They are filled with saline (I'm allergic to the presavative in the normal solution, so I've got to buy the preservative free saline on Amazon), and they kinda suction to your eyes and help smooth the cornea.

They're tough to get used to, but without them I can barely see well enough to walk around the house. Even with them I can't drive at night, read small print, etc.

You guys might go look up keratoconus and see if you have related symptoms.
i R a HoOmAn.

ronr

Times are tough when "Happy Hour" is your nap.
My mind not only wanders, sometimes it leaves completely!

foxgrove

Keratoconus... wow... I'm so glad to see that you are taking this in stride or faking it really well... I imagine there's a little bit of both in everything we do.  Most excellent that there is something that can be done to give you some vision.  Didn't know of those special contacts last time I went looking.  Have you been through evaluation for corneal crosslinking.  I imagine that it's an expensive treatment but it shows promise in some instances, especially when combined with IOLs (in-eye lenses).
Where God leads, His hand always provides
...so keep Calm and code on....

Foxgrove

denny

I KNEW IT WAS THE ALIENS!



"FREE ME FROM EXISTANCE"
It is what it is...

Hollywood

welcome Quirky....sorry for being a little late :insane:  I've been a little overwhelmed lately :rotfl: Better to laugh than cry.

You posted some good stuff on a thread I started a few days ago. I appreciate it.

Glad you found us.  As for navigating the boards, I usually hang around General discussions. Unless I'm mad and need to vent, then I go to  Rants and Raves. :emowall:

Talk to you more later

Stephen
Stephen Michael Dirse

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