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Posts
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Chat Log
Amanda (to Everyone): 5:32 PM: my therapist speciaizes in chronic illness.
Amanda (to Everyone): 5:36 PM: it looks great!!!
Kim (to Everyone): 5:36 PM: Thanks!
Lisbet finseth (to Everyone): 5:46 PM: Therapist who lives with MS – Heather Miller at All in Therapy
Jennifer Smith (to Everyone): 5:48 PM: oooh I forgot I am from Ol Richmond Indiana by the Ohio Border.
Kim (to Everyone): 5:49 PM: Jennifer lol
Amanda (to Everyone): 5:51 PM: the spirit fingers are implied in the tone lol
Kim (to Everyone): 5:51 PM: lol
Jennifer Smith (to Everyone): 5:53 PM: Welcome Olivia and Megan you are really in the right place even tho we all have a horrible, Ugly, and crappy diagnosis …
Jon “Is kind of okay” Andrews (to Everyone): 5:53 PM: FU MS
Amanda (to Everyone): 5:53 PM: UT austin has a ms center looks like
Jennifer Smith (to Everyone): 5:54 PM: Only for the strong I do know that
Lisbet finseth (to Everyone): 5:54 PM: erythrocytosis is common with MS and DMTs, both affect your red blood cells
Amanda (to Everyone): 5:54 PM: https://uthealthaustin.org/clinics/mulva-clinic-for-the-neurosciences/multiple-sclerosis?gclid=Cj0KCQjwhLKUBhDiARIsAMaTLnE6B-taaJb6Kabmbkxq7qhOlzFyGSWxu1kwfbZrLi9ancQIv8MUCNcaAmvzEALw_wcB
Jennifer Smith (to Everyone): 5:57 PM: abagio os the same
Jon “Is kind of okay” Andrews (to Everyone): 5:58 PM: I was in PT today and wet my pants without stopping my exercise
Jennifer Smith (to Everyone): 5:58 PM: Jon you are one dedicated fella
Jon “Is kind of okay” Andrews (to Everyone): 5:59 PM: I want better mobility.
Kim (to Everyone): 5:59 PM: I have had issues with stress incontinence recently with my coughing.
Christy (to Everyone): 5:59 PM: Don’t we all Jon
Jennifer Smith (to Everyone): 6:00 PM: Mary ….. Woot woot
Mary Pettigrew (to Everyone): 6:01 PM: Phew!! Big storms popped up! At least wifi is back!
Jon “Is kind of okay” Andrews (to Everyone): 6:01 PM: We have been having a lot of storms. Poor Gaylord, MI
Amanda (to Everyone): 6:04 PM: ms patients have the highest rate of anxiety and depression tho due to the chronic symptoms soooo…. two things can be true
Jennifer Smith (to Everyone): 6:04 PM: Same sweetie you have every right to choose you pathway thru this. Its your life.
Amanda (to Everyone): 6:05 PM: many of us have been misdiagnosed or had symptoms ignored so you are not alone
Amanda (to Everyone): 6:05 PM: that blog that i found used to be called bart ms
Jennifer Smith (to Everyone): 6:08 PM: I am glad you have a psychiatrist. Therapy is so important especially being just diagnosed and the fear we have with in our future …the unknown is scary.
Olivia (to Everyone): 6:14 PM: thank you everyone for being soooo validating and understanding!!!!
Jennifer Smith (to Everyone): 6:17 PM: Olivia your voice is heard here
Olivia (to Everyone): 6:18 PM: i just know if i’m not honest here i have no other safe place to discuss it with people that would understand– besides not wanting to share my name because i’m brand new to this diagnoss
Olivia (to Everyone): 6:18 PM: thank you so much everyone
Jon “Is kind of okay” Andrews (to Everyone): 6:20 PM: Hearing your raw emotion reminds me of the weeks and months after diagnosis. Thank you for story. Big step to share.
Olivia (to Everyone): 6:20 PM: thank you soooooooo sooooo much!!!!! i’m soooo thankful to my new friend Louie for telling me about this group
Jennifer Smith (to Everyone): 6:22 PM: And that is your right sweetie. I feel that Dr’s dont understand the mental part of what comes with MS and or any issues. When I worked in a DRs office I could not believe what I would hear them say about their patients its sickening really. There are some great Dr’s who want to understand the whole persons health. I am sending you positive healing vibes.. and those electric shocks are nasty.. I have to get a nerve test to find out what is going on cause I get them everyday. along with MS hugs. Cognitive, swallowing issues and comprehension.
Jon “Is kind of okay” Andrews (to Everyone): 6:23 PM: Dan and Jennifer wrote a book that helped me. It is called Despite MS, to Spite MS. It helped me learn that I can still have a brilliant life even with MS.
Mary Pettigrew (to Everyone): 6:24 PM: “It’s Not All in Your Head: Anxiety, Depression, Mood Swings, and Multiple Sclerosis” by Dr. Patricia Farrell
Olivia (to Everyone): 6:27 PM: you are all amazing!!!! i’m so glad i am here
Kim (to Everyone): 6:27 PM: 😀
Olivia (to Everyone): 6:28 PM: yessssss my family invalidates me sooooo much because my mom has had it since 97 so they keep saying because i was diagnosed now where there are better treatments than 25 years ok i will do great with ms
Jennifer Smith (to Everyone): 6:32 PM: Its the snowflake disease everyone is different … my Aunt and Cousin has MS and I always hear my family say oh you should speak with them .. they are doing well you will be fine… I am far from FINE!! I am almost 43 years old and I poop myself and get lost in a place I grew up. SO I have to laugh because if I dont I will go into that dark place I do not want to be in. Its scary.
Kim (to Everyone): 6:33 PM: Humor is my coping mechanism.
Jon “Is kind of okay” Andrews (to Everyone): 6:33 PM: Twinsies
Rick (to Everyone): 6:33 PM: Oh Amanda … hope you are alright!!
Jon “Is kind of okay” Andrews (to Everyone): 6:34 PM: “Did I buy blood oranges on accident?”
Tim Brien (to Everyone): 6:35 PM: @Jon I am allergic to oranges so I don’t have that problem
Amanda (to Everyone): 6:35 PM: thats a good suggestion jon
Karen (to Everyone): 6:36 PM: I cut my finger on the crease of a joint coincidently a bread knife. It took many many months to heal.
Amanda (to Everyone): 6:38 PM: Thanks everyone!!
Tim Brien (to Everyone): 6:38 PM: this talk of ticks makes me itchy
Amanda (to Everyone): 6:39 PM: YAYYYY OMG! so happy for you!!
Karen (to Everyone): 6:41 PM: Ampyra (dalfampridine) pill has helped me with urinary and fecal urgency. It is supposed to help with “walking speed.”
Amanda (to Everyone): 6:41 PM: SOLD!
Kim (to Everyone): 6:41 PM: I’m not coming up with good names only Rampy.
Amanda (to Everyone): 6:44 PM: just like my michael jackson gloves!
Amanda (to Everyone): 6:44 PM: you can have a little red corvette power chair!
Karen (to Everyone): 6:45 PM: I was told by the physiatrist (rehab medicine) and the PT high mobility clinic to wait for a wheelchair for the very reason you say. But a power chair will help with mobility.
Andrea (to Everyone): 6:45 PM: find one that’s a bitch’n camero
Amanda (to Everyone): 6:47 PM: to slap those providers!
Mary Pettigrew (to Everyone): 6:47 PM: FYI, next Tuesday, May 30th is World MS Day. the MS International Federation has LOTS of cool stuff planned, so take a look. http://www.msif.org
Lisbet finseth (to Everyone): 6:48 PM: thank you for letting me join tonight – you all are absolutely wonderful.
Mary Pettigrew (to Everyone): 6:48 PM: worldmsday.org
Christy (to Everyone): 6:49 PM: Jon, you might also want to look into the device Smart Assist. It turns your manual wheelchair into a power chair
Jon “Is kind of okay” Andrews (to Everyone): 6:50 PM: Thanks Christy
Christy (to Everyone): 6:50 PM: You’re welcome
Olivia (to Everyone): 6:52 PM: thank you thank you thank you everyone for making me feel sooo welcomed and heard tonight!!!!!
Jennifer Smith (to Everyone): 6:52 PM: Mary omg My son is having his 19 birthday Saturday and guess what the theme is The Beatles… Woot Woot
Olivia (to Everyone): 6:55 PM: thank you everyone =)=)
Andrea (to Everyone): 6:56 PM: Olivia, I am on my 4th neurologist, and he is wonderful. Find someone who not only hears you, but who you feel comfortable talking to.
Amanda (to Everyone): 6:56 PM: thanks for asking!
Amanda (to Everyone): 6:57 PM: alexa learns your voice
Amanda (to Everyone): 6:57 PM: that damn siri tho she is slow!
Louie Preciado (to Everyone): 7:00 PM: I always start my message by saying “I’m using voice to text” so if it messes up the person understands
Jon “Is kind of okay” Andrews (to Everyone): 7:00 PM: Nice !!
Jon “Is kind of okay” Andrews (to Everyone): 7:02 PM: Good night everyone. I have had a busy day. I am going to MISS all of you. This group is definitely a highlight of my week.
Andrea (to Everyone): 7:02 PM: Watch out for your neighbors!
Tim Brien (to Everyone): 7:02 PM: Goodnight Jon
Jon “Is kind of okay” Andrews (to Everyone): 7:02 PM: hahaha
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