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Today sucked. - Update #201


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#151 mommyoffive

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Posted 16 March 2017 - 08:38 AM

Glad you had a good day with someone you love yesterday.  


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#152 OhElizabeth

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Posted 16 March 2017 - 08:39 AM

Do you have a living will? I'm sure your social worker at the hospital, etc. will say this, but it's good to have everyone know the plan and onboard with the plan. You have the right to choose not to have that level of care. The most important thing is that you get the care you want and that people, who will have feelings about it, know who makes those decisions, the legal line of authority.

 

I think if you choose that path of extended care, if you needed it, your kids would be fine. We lost our MIL recently, and honestly the PRECIPITOUSNESS of it was very hard. I was crying about it today. Although a long goodbye seems horrible, on the other hand, it lets people make their peace with things. 

 

Your paint story is so hilarious. You go girl. Happy memories. :)



#153 AmandaVT

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Posted 16 March 2017 - 09:56 AM

Blsdmama - I am still hoping that ALS isn't the diagnosis, but if it is, you may want to reach out to Steve Gleason. I'm not sure if you're familiar with him, but he is a former New Orleans Saint football player who was diagnosed in 2011 with ALS. His company, Team Gleason, has a mission to help people diagnosed with ALS and similar diseases. 

 

http://www.teamgleason.org/


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#154 Ellesmere

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Posted 16 March 2017 - 10:07 AM

:grouphug: 
Never thought I would wish for Lyme for someone! I am so glad you have support here & at home. So many are hoping the best for you!  :grouphug:



#155 J-rap

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Posted 16 March 2017 - 10:28 AM

Oh, wow.  I will certainly be praying for you, and praying that it's "just" Lyme or something like that!

 

I also wanted to tell you about my father, who was only 8 years old when his father (his best buddy!) died a violent death.  This was back in the 1930's, and then his mother had to move to the city to get a job in order to support my father and his siblings after that.  She was unable to bring her children though, so was forced to leave them in the care of various friends and neighbors, for years, actually.  I'm sure my father must have gone through some very difficult times as a child during all of that.  But he always had friends and relatives and neighbors in his life who loved him and were there for him.  And, I have always known him to be one of the happiest, most optimistic people I have ever known.  He is an incredible man with a real zest for life!

 

I mention that because I know one of the things heaviest on your heart right now is thinking about what your children may go through.  But do know that even some difficult years during childhood doesn't mean their lives won't be happy and beautiful.

 

Also, if you end up going to Mayo at some point, I have a close family member who works there and is part of a very sweet church community there, if that's something that appeals to you.

 

:grouphug:  :grouphug:


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#156 JennyD

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Posted 16 March 2017 - 03:05 PM

Oh goodness, I am so sorry to hear that you are dealing with this, kelly.  I fervently hope that things are not as dire as you fear.  Thinking of you.



#157 Faithful_Steward

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Posted 20 March 2017 - 10:22 AM

Bump

Praying for you today, ((hugs))
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#158 creekland

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Posted 20 March 2017 - 10:25 AM

Bump

Praying for you today, ((hugs))

 

Ditto



#159 mumto2

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Posted 20 March 2017 - 10:35 AM

Praying......

#160 Sue in TX

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Posted 20 March 2017 - 10:44 AM

Praying!


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#161 heatherwith3

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Posted 20 March 2017 - 10:56 AM

Thinking of you today.

#162 MedicMom

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Posted 20 March 2017 - 11:03 AM

Thinking of you today as well and hoping for all the best. I am certainly not an expert on ALS but as a paramedic I have cared for patients with it, since in the advanced stages they can only leave the house by stretcher. I don't mean to downplay the horribleness of it, but wasting away like cancer or dementia is not necessarily the end result.

You're welcome to PM me and I can share details I won't necessarily put on an Internet forum.

Edited by MedicMom, 20 March 2017 - 11:04 AM.

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#163 Selkie

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Posted 20 March 2017 - 11:06 AM

I'm also thinking of you.  :grouphug:



#164 EKS

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Posted 20 March 2017 - 11:12 AM

:grouphug:



#165 NorthwestMom

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Posted 20 March 2017 - 11:13 AM

Thinking of you.

 

:grouphug:  :grouphug:  :grouphug:



#166 transientChris

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Posted 20 March 2017 - 11:31 AM

ALS is not like dementia.  Steven Hawkins has had ALS for decades.  He had it when I was in college in the early 80s.  My mom was diagnosed with ALS when I was in my senior year.  We got married before my dh's senior year because I wanted to have my mother at my wedding.  ( My dad had died when I was 13).  My mom was very weak at the end but she still enjoyed being with her kids, having her cat by her, and for when I took her out to visit a pretty garden very close to her death.  She died from pneumonia as a result of the ALS.  Steven Hawkins is still alive and working all these years later. I would want you to seriously reconsider things like feeding tube and other necessities that may occur if you have ALS.  It isn't the same at all like wasting away from dementia and as MedicMom has said, she has met people who are surviving for many years.  I think the greatest gift I have given my kids is my chronic diseases and infirmities.  It has helped them cope with issues as adults and has made them into very compassionate people who are always ready to help others.  It made them more independent.  It gave them more self-confidence.  

 

I really hope this is Lyme disease and do not see any reason why someone wouldn't prescribe you the doxycycline even as a lark.  So definitely pursue that but also start planning for your family if the disease does not go away be it ALS, Lyme disease that isn't amenable to treatment, or some other motor neuron disease.

 

 


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#167 Anne in CA

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Posted 20 March 2017 - 11:43 AM

Praying in CA!



#168 Suzanne115

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Posted 20 March 2017 - 12:11 PM

So sorry for what you are going through.  Praying for you!

 

Suzanne



#169 insertcreativenamehere

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Posted 20 March 2017 - 12:23 PM

Thinking and praying for you today.



#170 mommyoffive

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Posted 20 March 2017 - 01:22 PM

Sending every prayer I have.



#171 Caclcoca

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Posted 20 March 2017 - 02:00 PM

Thinking about you and your family today.



#172 J-rap

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Posted 20 March 2017 - 02:13 PM

Thinking about you today and keeping you in my prayers!



#173 edelweiss

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Posted 20 March 2017 - 02:22 PM

Many prayers for you today.

#174 transientChris

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Posted 20 March 2017 - 02:25 PM

I think that one of the best things about Well trained mind forum is how supportive we are all about others.  Yes, we are all pulling for you and so many of us are praying for you.  I hope that gives you some small bit of concolation.  I know when my one child was having serious medical problems,  i really did feel better knowing how many here were pulling for her to get better.


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#175 NorthwestMom

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Posted 20 March 2017 - 06:38 PM

Checking in.

 

:grouphug:  :grouphug:  :grouphug:

 

 



#176 Sue in TX

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Posted 20 March 2017 - 07:48 PM

Hugs and prayers...


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#177 MistyMountain

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Posted 20 March 2017 - 07:54 PM

I have been thinking about you.

#178 Ausmumof3

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Posted 20 March 2017 - 08:01 PM

Thinking of you

#179 ThatBookwormMom

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Posted 20 March 2017 - 09:04 PM

Big hugs, and diligent prayers.

#180 creekland

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Posted 20 March 2017 - 09:55 PM

Sending you some love tonight - and tons of internet (but just as real)  :grouphug: .  Take care.



#181 Arctic Mama

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Posted 20 March 2017 - 10:56 PM

Still thinking about you and praying here, too. Love to you and your family from mine!

#182 Melissa in Australia

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Posted 20 March 2017 - 11:03 PM

:grouphug:  :grouphug:



#183 Catwoman

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Posted 20 March 2017 - 11:05 PM

Praying for you every day! :grouphug:

#184 Eagle

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Posted 20 March 2017 - 11:07 PM

Thinking of you. :grouphug:

#185 mominco

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Posted 20 March 2017 - 11:24 PM

Thoughts and Prayers!



#186 OneStepAtATime

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Posted 20 March 2017 - 11:30 PM

As with so many others, sending you hugs and prayers and positive thoughts tonight.



#187 Lawana

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Posted 21 March 2017 - 06:51 AM

Also sending big hugs and comforting energy.

#188 happysmileylady

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Posted 21 March 2017 - 07:21 AM

:grouphug: :grouphug:



#189 RootAnn

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Posted 21 March 2017 - 08:57 AM

My whole family has been praying for you & your family.



#190 LMV

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Posted 21 March 2017 - 11:52 AM

Prayers...

#191 Sue in TX

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Posted 21 March 2017 - 12:29 PM

You're on my heart today. Praying for you and your family. (((Hugs)))


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#192 jjeepa

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Posted 21 March 2017 - 12:46 PM

Praying  :grouphug:



#193 Innisfree

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Posted 21 March 2017 - 12:59 PM

Thinking of you.

#194 That70'sLisa

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Posted 21 March 2017 - 01:18 PM

:grouphug: :grouphug: :grouphug: and many, many prayers for you. Also praying for your DH and your sweet children.



#195 Jaybee

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Posted 21 March 2017 - 01:34 PM

Thinking of you, and praying for you and your family. :grouphug:  :grouphug:



#196 Kimberly in IN

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Posted 21 March 2017 - 01:40 PM

You and your family are in my thoughts and prayers. 



#197 Upptacka

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Posted 21 March 2017 - 10:55 PM

Praying for you......

#198 OneStepAtATime

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Posted 22 March 2017 - 12:23 AM

:grouphug:  :grouphug:  :grouphug: Hoping and praying and sending positive thoughts to you and your family...



#199 creekland

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Posted 22 March 2017 - 07:56 AM

Sending more prayers for today.   :grouphug: too.



#200 Sue in TX

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Posted 22 March 2017 - 11:19 AM

Praying for you each day.


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