Glad you had a good day with someone you love yesterday.
Today sucked. - Update #201
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.
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.
- transientChris, Anne, BlsdMama and 5 others like this
Posted 16 March 2017 - 10:07 AM
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!
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.
- Anne in CA, BlsdMama, tcb and 1 other like this
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.
Posted 20 March 2017 - 10:22 AM
Praying for you today, ((hugs))
- creekland and texasmom33 like this
Posted 20 March 2017 - 11:03 AM
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.
- Melissa in Australia, heatherwith3 and MercyA like this
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.
- Barb_, nrg, Melissa in Australia and 5 others like this
Posted 20 March 2017 - 12:11 PM
So sorry for what you are going through. Praying for you!
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.
- Jean in Newcastle, Anne, Melissa in Australia and 7 others like this
Posted 20 March 2017 - 09:55 PM
Sending you some love tonight - and tons of internet (but just as real) . Take care.
Posted 20 March 2017 - 10:56 PM
Posted 20 March 2017 - 11:30 PM
As with so many others, sending you hugs and prayers and positive thoughts tonight.
Posted 21 March 2017 - 12:29 PM
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Posted 21 March 2017 - 01:18 PM
and many, many prayers for you. Also praying for your DH and your sweet children.
Posted 22 March 2017 - 12:23 AM
Hoping and praying and sending positive thoughts to you and your family...
Posted 22 March 2017 - 11:19 AM
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