My ALS Journey Still trying to find comfort

[@qedqed110]

Every person i know thinks i am being taken by her. I think of you, my Texan sister. It is absolutely an act of faith to live your truth, even if it makes a fool of ourselves. I always believe you live in your truth, too. I'm holding your hand, my friend. Frontporchtalker.

[@tallskinnywith6shots1]

Thank you Fpt, I’ve never been one to live other than how I am. I don’t see the point to be a fraud or scam bad karma. When I graduated for nursing school, the word they chose for me was integrity. Thank you for the support. It means a lot.

[@qedqed110]

You are so loved, my lone star sister! Just like the woman I met over the border (see below), we've never met in person either. I use my intuition and my keen senses for everything. You know sooo much about the physical understanding of medical stuff. I use my special power, ADHD, to get around. The other day I was looking thru a car lot (i blew the engine in my JEEP, and a rude woman treated me like I was casing the place... oK, YOU are now au courant!

[@tallskinnywith6shots1]

How rude what a way to treat a potential customer. People these days the election doesn’t help the way people are treating each other. Jeep engine that’s an expensive one. My niece just spent well is paying off $10,000 to have her engine replaced in her jeep eek. May it all work out. Much love to you

[@ThePerfectSeason1972]

Nice to hear from you again.

[@qedqed110]

p.s. What I most respect and admire about you; You tell the truth and keep it real, my friend. Keep keeping it real!

[@tallskinnywith6shots1]

@@qedqed110 Thank you my friend about time to creeping it real :) I can only be who I am why bother with anything else?

[@lindylouwilliams8331]

Bless you, its so damn annoying & having ALS( a nasty disease) wish they found a cure for these illnesses. Take care lovely xx ❤

[@qedqed110]

My Lone Star sister, I am so sorry but I know that won't help your pain. "You are loved!" I saw that banner draped on an overpass on the saddest day ever. I was walking around Green Lake, crying. I COULDN'T STOP. So, I just prayed,, "God, please just give me a sign that I am loved." Two miles later, driving home, I saw that banner: YOU ARE LOVED! In my experience (as wise as I am!), the worst pain is becoming numb and pushing it down. Pretending 'it's all good.' Nothing goes away Just pr

[@tallskinnywith6shots1]

@@qedqed110 my PNW sister, you are loved. I think that is a beautiful. Yes, being numb and pushing it down is not good emotional pain mental pain. You have to go through it to get over it and some of it sticks. You just have to put it in perspective let life grow around it. Physical pain is no fun. I have done a lot of CBT it really helps. Now I do my meditations and prayers, trying to find the wisdom in it.

[@davidderoux7552]

Are you sure you have ALS? Almost 5 years ago you said you have tongue fasciculations but your speech sounds absolutely normal which would be incredible after all these years if your diagnosis is accurate. Maybe you have PLS.

[@tallskinnywith6shots1]

@@davidderoux7552 not PLS unfortunately I wish it was. I have both upper and lower neuron deficits. EMG confirmed two different groups and a third that was research. Yes, I have ALS it is a slower progressing version of it and each case is a little bit different some of us live longer currently I’m going through a progression and having a lot of pain. I still have tongue fasciculations, and hemifacial cramps which is why I had the Botox. As Dr. Appel says I’m lucky.

[@qedqed110]

...I fell asleep while pontificating on the meaning of life! Please keep telling your story, no matter what. I am out here listening, and yes--gaining your wisdom. Besides, we have a bigly pain--and narcissist, whose name I dare not say.We must be vigilant together Frontporchtalker (you've already had your hugs quota for the summer).

[@tallskinnywith6shots1]

@@qedqed110 he who should not be named, vigilance, and action. I hope your pontificating leads to more writing. I enjoy it. Frontporchtalker

[@qedqed110]

note that my two comments are backwards. the scam comes after the truth and God

[@bbforever761]

Take whatever pain meds they give you. But take them with gravol (in canada) in the US I think it is called dramamine or draminate

[@tallskinnywith6shots1]

@bbforever761 Thank you so much I forgot about gravol, I have draminate and took it this morning such relief. Bless you

[@qedqed110]

Footprints in the Sand. Remember that?

[@tallskinnywith6shots1]

@@qedqed110 yes

[@lindylouwilliams8331]

Universite Laval researchers found that an extract of the ashwagandha plant causes a dissappearance of symptons in mice genetically modified to reproduce ALS from India, used for 1000s of years was recently used in Quebe city's university Laval called Withaferin A, an extract from the ashwagandha plant. Hope this is informative xx ❤

[@tallskinnywith6shots1]

@@lindylouwilliams8331 thanks I’ve taken ashwaganda over the years :)

[@qedqed110]

I Have always lived my truth, in my heart, and had faith it was the way to go. I'd live my truth, as an example I told myself. Other than God, I'm not particularly religious.So recently, this past year, I fell for someone who has been thru some major issues, always trying to help her get home. I am losing my faith. Maybe I did this to myself, just to justify my relationship. OR

[@tallskinnywith6shots1]

Be gentle to yourself, spirituality is a journey as is faith. Love is love prayer works, but not in the way we always intend.. love from Texas

[@qedqed110]

@@tallskinnywith6shots1 i really needed to hear that. Thank you, with love from the Emerald City.

[@trudyboschert4472]

Your weight appears healthy to me.

[@tallskinnywith6shots1]

@@trudyboschert4472 yes I just lost a lot of weight rapidly- fluffy before