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#101 maize

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Posted 14 March 2017 - 01:04 PM

Oh Kelly, my heart is aching for you and your family.



#102 Katy

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Posted 14 March 2017 - 01:07 PM

Can you go into the urgent care clinic, say your DH found an engorged tick on you, and last week when it was warm you spent some time at the state park?  Also say your DH got lyme disease from a tick there previously and you would like a full two week preventative course of antibiotics?

 

Or if not, you can get doxycycline for fish tanks (it's the same medicine as for people) yourself, without a prescription, online and in some pet stores. 

 

 

ETA:  When I got I got diagnosed with Lyme, a few days later I found an engorged tick on DH's head, just going to the walk in clinic and saying that was all he needed to get treated too.


Edited by Katy, 14 March 2017 - 01:30 PM.

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#103 speedmom4

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Posted 14 March 2017 - 01:22 PM

I'm really really sorry you are going through this. Praying for you.  :grouphug:  :grouphug:  :grouphug:



#104 trulycrabby

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Posted 14 March 2017 - 01:25 PM

I am so very sorry you are even having to contemplate having this illness. :grouphug:

#105 Scarlett

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Posted 14 March 2017 - 01:33 PM

I guess when my friend travedl 5 hours to have it confirmed they had already ruled out everything else.  But I was under the impression they did a specific test that did confirm it. 



#106 Jenn in FL

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Posted 14 March 2017 - 02:01 PM

Kelly... :grouphug:  :grouphug:  :grouphug:

 

I am sure you have already seen/read this abstract, but just in case.  Your symptoms and patient presentation appear similar.

 

You desperately need to see a highly qualified Lyme Literate MD.  (LLMD)

 

Lyme disease -induced polyradiculopathy mimicking amyotrophic lateral sclerosis.

 

https://www.ncbi.nlm...pubmed/24397499

 

All the patient required was doxy.

 

Never give up!   :grouphug:  :grouphug:  :grouphug:

 

 

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#107 Penguin

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Posted 14 March 2017 - 02:14 PM

I am so sorry that you are going through this.  :grouphug:  :grouphug:



#108 Melissa in Australia

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Posted 14 March 2017 - 02:14 PM

:grouphug:  :grouphug:  :crying:  :crying:  :grouphug:  :grouphug:



#109 Paige

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Posted 14 March 2017 - 02:24 PM

I'm so sorry! I hope that it is Lyme disease or something that is easier to deal with. My aunt and grandfather passed away from ALS and I know more than I want about what it's like. I know the ice bucket challenge has been very positive for ALS research so maybe there is a new treatment or a clinical trial that you could be involved in.

 

 


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#110 Forget-me-not

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Posted 14 March 2017 - 02:37 PM

I've been thinking about you and wondering if there was an update. I'm so terribly sorry that some of the "happier" possibilities have been ruled out. I'll pray for you and your family. 💙💙💙

#111 MistyMountain

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Posted 14 March 2017 - 02:41 PM

Oh my goodness. I am so sorry. I really hope you are able to find lyme treatment and it works. You have nothing to lose by trying it.

#112 Ali in OR

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Posted 14 March 2017 - 02:43 PM

I'm so sorry, and still hope and pray this will turn out to be something else. In honor of my neighbor Anna who walked this road (and then wheelchaired this road), let me wish you peace, grace, strength, and love to live a beautiful life. This sucks for everyone, but with a wonderful dad and loving family support, your kids will be okay.


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#113 OhElizabeth

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Posted 14 March 2017 - 02:57 PM

I agree. Helpful post - thank you.  We have been talking about this.  Just had an eval with one dd that didn't go well. I put faith in the U of Iowa to recognized remediated dyslexia.  Stupid.  Should have gone to a dyslexia expert.  But, they did give her a diagnosis of a written expression disability - you know grammar, spelling.  SMH.  That was $$ wasted.  

 

 

You know, I'd much rather not waste time on the emotional black hole and start planning.  I think I probably have less because of how fast this is moving.  I only got drop foot at the beginning of fall / end of summer.  We thought it was a knee problem.  I had a car accident years ago and thought it was coming back to haunt me in nerve damage.  

So, this winter.  Once the twitching started it started only in one leg.  But then the other, now the arm.  My abdomen twitches and now my lip has twitched twice.  Once the tongue begins that isn't good. But the biggest sign of problems is probably my rib pain.  Interstitial muscle failure signals respiratory involvement from everything I've read.  The neuro doesn't want to talk about my rib pain until we know what we are dealing with.  I understand what he's saying, but I also know that it signals poor things unfortunately.  Remember that the 3-5 plan is generally for people who are willing to be fully intubated and have feeding tubes until they are so emaciated that their body can no longer support them.  I am willing to use a bi-pap.  I am unwilling to be intubated. It will be a cold day in hell before I lengthen this torture out for my kids to watch.  My grandmother shrunk away to nothing and her kids wished mercy on her long before it came.  I would never, ever, ever put the 5-20 crowd through that.  Ever.

 

Yes, this is the time to call in the chits (paybacks, favors, credits) and find somebody who is really head on straight about their evals. It is a GIFT to your kids to get them evals, to get the NEXT person who helps them COMPLETE information. No one has in your head the complete picture like you do. You MUST start putting that down.

 

Say it's Lyme. You still need it all down. Even in best scenario, you need all this written down. And you need to do it now, before the diagnosis, if you can, for those letters of intent. Things may get really fast or overwhelming starting Monday, so this is your chance to slow down and reflect. It's a healthy way to kill the time.

 

Will your pastor or religious leader meet with you? Even if he just meets with you this week and prays, that would be something. Don't go into this silently, without them knowing. Some people are really private, and this is the time to open up and let someone help you.


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#114 JoJosMom

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Posted 14 March 2017 - 03:15 PM

I just saw this thread.  I cannot stop crying.  I am so, so sorry and am desperately praying for a Lyme diagnosis.

 

:grouphug: :grouphug: :grouphug:


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#115 clementine

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Posted 14 March 2017 - 03:36 PM

Kelly... :grouphug:  :grouphug:  :grouphug:

 

I am sure you have already seen/read this abstract, but just in case.  Your symptoms and patient presentation appear similar.

 

You desperately need to see a highly qualified Lyme Literate MD.  (LLMD)

 

Lyme disease -induced polyradiculopathy mimicking amyotrophic lateral sclerosis.

 

https://www.ncbi.nlm...pubmed/24397499

 

All the patient required was doxy.

 

Never give up!   :grouphug:  :grouphug:  :grouphug:

 

 

This, this, this.  Travel somewhere to find a doctor like this to squeeze you in.  Please!  


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#116 caedmyn

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Posted 14 March 2017 - 03:40 PM

I'm so sorry.  ((hugs))


Edited by caedmyn, 14 March 2017 - 05:49 PM.

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#117 mominco

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Posted 14 March 2017 - 04:25 PM

:grouphug:  :grouphug:  :grouphug:



#118 Nemom

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Posted 14 March 2017 - 04:27 PM

I'm so sorry.  Praying for you.

 

Have you ever watched the documentary "Under our Skin"?  It is about lyme disease and really eye opening.  It use to be available on Netflix or YouTube.  I would check your library.

 

http://underourskin.com

 

You may be able to get in with an LLMD fairly quickly if they have cancellations.  If you would like the names of one in Minnesota and one in Missouri, please PM me.

 


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#119 RootAnn

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Posted 14 March 2017 - 04:53 PM

Mamas, never underestimate what you do.  Every day you spend homeschooling, loving, nurturing your children, it is the world to them.  You may feel taken for granted, but their lives would change if you weren't there doing what you do. <3

 

This post of yours made me cry as well. We'll be praying for you & your family, regardless of diagnosis. You've always inspired me & continue to do so.  :grouphug:


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#120 pinkmint

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Posted 14 March 2017 - 05:33 PM

Thinking of you and praying. (((Kelly)))

#121 Ausmumof3

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Posted 14 March 2017 - 05:35 PM

:grouphug:

#122 tcb

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Posted 14 March 2017 - 05:45 PM

Praying for Lyme here too. So sorry you are going through this!  :grouphug:



#123 corbster98

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Posted 14 March 2017 - 05:59 PM

I am sorry to hear of the possible diagnosis... praying for you. If you do find that it is ALS and want to speak with someone that has been close to ALS, feel free to PM me. We moved back to NC in 2012 to help my mom with the care-taking of my father, who passed away from ALS. It was a very difficult disease for not only him but our entire family. As hard as it was, there were also so many blessings in so many ways.

Hugs....


Edited by corbster98, 14 March 2017 - 05:59 PM.

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#124 idnib

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Posted 14 March 2017 - 08:42 PM

I'm so sorry this is happening.

 

I'm glad you're still pursuing the Lyme disease trail as well. Someone on these boards had a son who had a non-Lyme tick disease and went to what sounded like an excellent tick disease center. I wish I could remember who, but hopefully she will pop in here.

 

:grouphug:  :grouphug:  :grouphug:



#125 MomsintheGarden

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Posted 15 March 2017 - 02:52 AM

I am so very sorry. Praying for you, and also hoping it is Lyme and you can get treated.

#126 Laura Corin

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Posted 15 March 2017 - 04:19 AM

Thinking of you.



#127 Tibbie Dunbar

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Posted 15 March 2017 - 05:52 AM

:grouphug: :grouphug: :grouphug:



#128 PinkTulip

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Posted 15 March 2017 - 06:05 AM

All my love and prayers to you and your family!

#129 MedicMom

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Posted 15 March 2017 - 07:04 AM

I agree. Helpful post - thank you. We have been talking about this. Just had an eval with one dd that didn't go well. I put faith in the U of Iowa to recognized remediated dyslexia. Stupid. Should have gone to a dyslexia expert. But, they did give her a diagnosis of a written expression disability - you know grammar, spelling. SMH. That was $$ wasted.



You know, I'd much rather not waste time on the emotional black hole and start planning. I think I probably have less because of how fast this is moving. I only got drop foot at the beginning of fall / end of summer. We thought it was a knee problem. I had a car accident years ago and thought it was coming back to haunt me in nerve damage.

So, this winter. Once the twitching started it started only in one leg. But then the other, now the arm. My abdomen twitches and now my lip has twitched twice. Once the tongue begins that isn't good. But the biggest sign of problems is probably my rib pain. Interstitial muscle failure signals respiratory involvement from everything I've read. The neuro doesn't want to talk about my rib pain until we know what we are dealing with. I understand what he's saying, but I also know that it signals poor things unfortunately. Remember that the 3-5 plan is generally for people who are willing to be fully intubated and have feeding tubes until they are so emaciated that their body can no longer support them. I am willing to use a bi-pap. I am unwilling to be intubated. It will be a cold day in hell before I lengthen this torture out for my kids to watch. My grandmother shrunk away to nothing and her kids wished mercy on her long before it came. I would never, ever, ever put the 5-20 crowd through that. Ever.

ALS is a horrible disease. However, I have taken care of many of patients in the advanced stages. None have been emaciated; they are receiving excellent nutrition through the feeding tube. They aren't intubated; they have trachs placed and use portable ventilators. I've had many patients who are able to communicate with their families through eye movements that are read by a computer and turned into text. This doesn't reduce the horribleness of the disease, but I've worked with many people who are living 5-10 years past diagnosis, at home with their families. I had one patient who was at 15 years past diagnosis, still comfortable at home and able to communicate with adapative equipment.

Edited by MedicMom, 15 March 2017 - 07:05 AM.

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#130 Fifiruth

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Posted 15 March 2017 - 07:58 AM

I wanted to send my support and prayers.

#131 PrairieSong

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Posted 15 March 2017 - 08:16 AM

So so sorry to hear this! Hoping it's Lyme. {{{Hugs}}}

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#132 NorthwestMom

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Posted 15 March 2017 - 08:39 AM

Kelly, you are so courageous and keeping your kids at the top of your mind despite everything. You are my role model. I am praying that you get some antibiotics and some good news.



#133 myblessings4

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Posted 15 March 2017 - 08:54 AM

I'm so sorry!! Never thought I would have to say this to anyone, but I'm praying for Lyme!! Is your appointment for Lyme muscle test soon??
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#134 Attolia

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Posted 15 March 2017 - 09:01 AM

:grouphug:  :grouphug:  :grouphug:



#135 happysmileylady

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Posted 15 March 2017 - 09:13 AM

:grouphug: :grouphug:

 

Yes, sucks is the right word.



#136 Stratford

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Posted 15 March 2017 - 09:33 AM

:grouphug:  :grouphug:  :grouphug:   Praying for better news soon.



#137 MrsRobinson

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Posted 15 March 2017 - 10:12 AM

:grouphug: So sorry you are faced with this. I've always enjoyed your posts and have seen how important your kids are to you. Your love and concern for your kids in the face of a devastating diagnosis is very moving. I've often thought I hope I don't pass while my kids are still at home because even though I'm far from perfect as a person and a mom, I'm *their* mom. I hope and pray that it isn't the worst and it's treatable Lyme instead.

#138 OhElizabeth

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Posted 15 March 2017 - 11:11 AM

ALS is a horrible disease. However, I have taken care of many of patients in the advanced stages. None have been emaciated; they are receiving excellent nutrition through the feeding tube. They aren't intubated; they have trachs placed and use portable ventilators. I've had many patients who are able to communicate with their families through eye movements that are read by a computer and turned into text. This doesn't reduce the horribleness of the disease, but I've worked with many people who are living 5-10 years past diagnosis, at home with their families. I had one patient who was at 15 years past diagnosis, still comfortable at home and able to communicate with adapative equipment.

 

Wow, this is amazing. And it really pushes the envelope on how you decide your care and what you want to receive. That would take some serious counseling and unity on how to approach it. Wow.


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#139 MedicMom

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Posted 15 March 2017 - 01:02 PM

Wow, this is amazing. And it really pushes the envelope on how you decide your care and what you want to receive. That would take some serious counseling and unity on how to approach it. Wow.


I don't want to downplay the horribleness of ALS at all. It is truly terrible and devastating. However, there are medical advances that make interaction and life possible. Check out Amanda's Angels on Facebook(https://m.facebook.c...andasAngelsALS/). She is passed now, but was able to write and communicate throughout her ALS journey, even up to the very end.
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#140 ScoutTN

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Posted 15 March 2017 - 01:23 PM

I hope it is Lyme. And you are one fantastic mom. The love for your kids that shines through in your words is beautiful.  :grouphug:

 

 

:iagree:  :iagree:  :iagree:



#141 insertcreativenamehere

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Posted 15 March 2017 - 01:34 PM

I'm really, really hoping that it is not ALS -- but if it is, I want to echo MedicMom in saying that interventions like trachs and feeding tubes don't have to be scary or something to be avoided at all costs. My 4 yo son had a trach for 3 years and still has a feeding tube. Now his issues are vastly different, but our experience with him has shown that these things can definitely be compatible with a good quality of life. He gets amazing nutrition (much better than everyone else in the family!) through his feeding tube -- the food we give through his feeding tube (Nourish) is a pediatric version of something called Liquid Hope. It's all-organic, whole-foods and is used by many people with ALS, including Steve Gleason (former NFL football player.) From what I understand, nutrition can be an important strategy in slowing down the process and extending quality of life. Our insurance pays for it, 100%. 

 

Regardless, I'm thinking and praying for you and praying for a Lyme diagnosis. 


Edited by insertcreativenamehere, 15 March 2017 - 01:35 PM.

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#142 Yellow Rose

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Posted 15 March 2017 - 02:27 PM

I'm ashamed of my petty problems today.

 

Blsdmama, you're in my thoughts and prayers. Hugs to you and your family. May this illness please turn out to be something else.


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#143 kbutton

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Posted 15 March 2017 - 04:52 PM

:grouphug:  :grouphug:  :grouphug:



#144 Denise in IN

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Posted 15 March 2017 - 05:09 PM

I'm sorry you're having to walk this path.  Praying for you today.   :grouphug:



#145 Lilaclady

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Posted 15 March 2017 - 08:49 PM

((Hugs)) praying its Lyme and not ALS.

#146 Spryte

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Posted 15 March 2017 - 10:53 PM

Still thinking of you. Please, please see an LLMD. Don't wait. My DH asks the same ... he is rooting for an LLMD for you, pronto.

Gentle hugs to you...
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#147 Joules

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Posted 16 March 2017 - 02:36 AM

Thinking of you this morning  :grouphug:



#148 BlsdMama

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Posted 16 March 2017 - 07:43 AM

&nbsp;

I'm ashamed of my petty problems today.
&nbsp;
Blsdmama, you're in my thoughts and prayers. Hugs to you and your family. May this illness please turn out to be something else.

&nbsp;

I <3 petty problems. Not shame on you at all. ((Hugs))

On an amusing note, we are in the middle of a remodel. (Kind of expected the dr. appt. on Monday to say different things *obviously.*) I left spray paint on the counter apparently, or someone did. I was moving a little slow this AM and he beat me to the kitchen where he spraypainted the floor (being replaced) a cabinet (scrubbing furiously) and part of the oven (also scrubbing furiously.) Petty problems are also on the front of *my* mind too. ;)
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#149 BlsdMama

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Posted 16 March 2017 - 07:47 AM

I'm really, really hoping that it is not ALS -- but if it is, I want to echo MedicMom in saying that interventions like trachs and feeding tubes don't have to be scary or something to be avoided at all costs. My 4 yo son had a trach for 3 years and still has a feeding tube. Now his issues are vastly different, but our experience with him has shown that these things can definitely be compatible with a good quality of life. He gets amazing nutrition (much better than everyone else in the family!) through his feeding tube -- the food we give through his feeding tube (Nourish) is a pediatric version of something called Liquid Hope. It's all-organic, whole-foods and is used by many people with ALS, including Steve Gleason (former NFL football player.) From what I understand, nutrition can be an important strategy in slowing down the process and extending quality of life. Our insurance pays for it, 100%. 

 

Regardless, I'm thinking and praying for you and praying for a Lyme diagnosis. 

 

 

ALS is a horrible disease. However, I have taken care of many of patients in the advanced stages. None have been emaciated; they are receiving excellent nutrition through the feeding tube. They aren't intubated; they have trachs placed and use portable ventilators. I've had many patients who are able to communicate with their families through eye movements that are read by a computer and turned into text. This doesn't reduce the horribleness of the disease, but I've worked with many people who are living 5-10 years past diagnosis, at home with their families. I had one patient who was at 15 years past diagnosis, still comfortable at home and able to communicate with adapative equipment.

 

 

If ya'all don't mind I'm going to send you a PM.  Unfortunately early on in my fears I googled images.  You can't unsee some things. I think it might do me well to talk to you. I will assume that if this next Monday goes south (and my leg is more apparently atrophied even this week so I don't expect it to go well) that they will refer me to Clinic.  I think that might be very soothing  for DH and I.  We are *still* pursuing this Lyme thing but. Ugh. All of it.

 

On an up note - spent yesterday with my cousin. We are two peas in a pod and I am not sure there are many people on this earth I love more than her.  It was total therapy.  Dear God I am grateful for her.  We laughed until we practically cried and then started over again. She bought stuff for the kids to make cookies.  It was the best thing I could have done. I love her so much.


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#150 ScoutTN

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Posted 16 March 2017 - 07:48 AM

Praying for you this morning, Kelly.