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» LymeNet Flash » Questions and Discussion » General Support » The hospital wants Trek out, this is real and weird

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Author Topic: The hospital wants Trek out, this is real and weird
Silverwolf
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Here we go, couldnt think of the right word.
New topic,on a continuing issue.

Trekwannabe/txcoord he used to be called I think, is still quite ill, Kidneys work, but he cannot walk. has painful spasms in his back. has trouble breathing if he gets very tired etc. So he has to take breathing help. I forget what it is called.

any how, they say his time is up, and he has to leave or pay 10,000 dollars a day. VA doesnt want to help. says it is a community emergency problem. He is supposed to be on full disability pay. from VA. They also messed up my Champ VA. We talk to social worker tommorrow, She is looking for a State run liscensed home. Rehabs,are full,and or not equiped for his type issues, and hospice wont give more than afew days,and must be paid also. It is a real mess, dont have ideas or options right now except to pray.

Hope it is okay to do the topic situatiion this way, Jus; Silverwofi here,

[ 04-04-2022, 07:53 PM: Message edited by: Silverwolf ]

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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Silverwolf
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he has to take breathing treatments is what I was trying to say!

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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Lymetoo
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Oh my goodness!! Tell them to keep working at it .. He needs a good facility that CARES!!!

I'll be praying!!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Silverwolf
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Thanks so much , Lymetoo we are exceedingly disappointed w/ the VA at this point. I suspect it is long Covid,at this point. No energy,and his cardiac Dr. is giving him strong pain meds to ease things, to much pain is not good for his heart. The meds he was taking,have caused serious ulceration. So he wont have those anymore.

It is scary to us, but we are staying in prayer,and ask others to continue in prayer. Again thank you for yours!!!

They cannot legally release him here to home,no proper medical personell. It is going to be interesting for certain!

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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hiker53
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So sorry to hear this.

Never can understand why people who need help the most can't get it, especially veterans.

Praying.

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

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Silverwolf
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The veterans system is a real mess and here. they have no beds. They told our social worker they'd pay, But it has to be in one of three places. Regular VA hospital, Veterans nursing home, or Base hospital. All three are full w/ no beds.

Soc. Worker is trying to get him an opening, at a state licensed group home, with a nurse on duty, 24 /7, but we have to pay for it someway! He had emergency medicare but it is almost gone now.

Trek cannot, walk or setup enough to get out of bed. They put him on high strength percoset, after he awoke screaming from the pain of back spasms, not too long ago.He cannot do diclofenac any more, as he gets serious bleeding ulcers. so that wont happen again it's To dangerous. We will see what happens, continuing prayers help so much!!! It has helped, for awhile we didn't know if he would make it,So far praise God he is a live, and trying hard, to do what he can from the bed he is in .

Have a young pup being kept for him that has a surgery tomorrow early am. Hoping all works out. and he can come home in a few weeks,and enjoy the pup. Maybe it will help trek get better!

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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Silverwolf
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Oh.not in SE Idaho now for a decade. There was nothing in the area of Idaho, that we were in, literally that was safe as to Veterans care, we had to go out of state.

Better area now,if there were any beds, there are none, as for Veterans.

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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aklnwlf
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Hope and pray the social worker can come up with some viable options. Keeping you guys in prayer.

[group hug]

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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Lymetoo
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Silver .. I'm still praying for you two.

Have they tried magnesium for the muscle spasms? Or muscle relaxants?

--------------------
--Lymetutu--
Opinions, not medical advice!

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Silverwolf
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Hi Lymetoo, HE was taking magnesium here at home, don't know if they are giving any to him now. They also managed to lose his Cpap machine, He is not happy about that. The social workers, are trying hard to find somewhere decent and get him into the Veterans home. They are being insistent which we like. BBL Pup had surgery Wed. and is crying.

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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Silverwolf
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Pup is getting hungry,so was crying, he is a sweety and also a hand full. he isn't allowed to do steps right now so it is interesting to work w/ him.

Since I found out they don't know where Mario's Cpap is,I haven't been happy about it.

Hopefully he doesnt have to stay in a group home to long, and can go thpo the Vets home, where they must pay,as they should have been all along. Better go for now. Will check back later.

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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Silverwolf
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Slowly,so slowly they are getting things done? almost? they contacted VA for a CPAP for Trek' finally. S. W. workers are looking into his housing and so on. Still don't know if there is more surgery to come. Hope they tell us soonest! Jus' that Silverwolfi here!

[ 04-15-2022, 03:28 PM: Message edited by: Silverwolf ]

--------------------
2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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Silverwolf
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Updating: waiting ona test to see how Treks heart is, from the phone, I couldn't get there this week. no way to get a ride.

His ulcers have been checked: sealed and not bleeding. Thank you Lord. He should be almost done w/ heart test if there was nothing serious going on. I'll check in an hour or so.

Strangely , both phones are acting up, cell that I couldn't hear on finally quit, house phone, finally was fixed, so folk can call in, but now, voicemails cannot be heard or deleted. Aaarrrrrggghhhhh! Hopefully next week I can get a cell that works, and is inexpensive, Trekwannabe, prefers I go w/ Tracphones,for ease of adding minutes, so we will see. LAter, hopefully w/ more info.!!!

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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Lymetoo
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Silver .. I'm still praying for my buddy, Trek!!

I'm glad to see he is posting on FB again.

I hope you can get a phone very soon and that Trek gets his CPAP VERY SOON!!!!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Silverwolf
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Hi Lymetoo,and LymeNet friends, They finally got my Trek a Cpap ,quite different from the old one, he said it is taking getting used too.

He had his heart test, things are going well that way!

He may still need a small surgery from urology hopefully they'll figure out something soon.

His paperwork 'discharge' is started,and the social worker liasuan is looking for a decent group home. Til they can get him to the Vets home, about 35 minutes from here.

Still no phone that works right, the friend who was going to tke me has been ill. Friend has that illness where you cant eat most seeds nuts etc, And is fighting an infection right now. Mu brain drew a blank cant think of the name. So I do the best I can w/ the house phone. It will be good to see Trek this next week, didn't get to this week.

Jus Silverwolfi here

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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Silverwolf
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Our friend has had a diverticulitis attack, bless her, shes got to find something she and her husband can eat. They have both had Covid and then this illness attacked her system.

Sometimes she helps w/ errands and or groceries when she is well enough,plus she works various jobs,. Her fella does sound at our church.

Talked to Trek for a bit this afternoon, he was resting and readying himself to finish the taxes. Prolly will do that Monday! be back later,Thanks for praying it does make a difference!

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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Bartenderbonnie
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Silver and Trek
Sending healing wishes your way.

It pains me that you are unable to visit Trek.
Are you physically able to take a ParaTransit bus?
They allow a traveling care taker, family member, neighbor, etc to assist you on your travels.

I don’t know if this county is yours, but it offers info on how to get started,
Once they get him transferred to a VA facility, you could have transportation to and from for future visits.

https://www.kcgov.us/DocumentCenter/View/9281/ADA-Paratransit-Application?bidId=

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Silverwolf
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Thank you so much for the concern!! Bartenderbonnie, A church friend often takes me, but could not this time, because of Easter season work.

Sometimes the days get changed around too, so I do the best I can,as does Trek, we were trying to coordinate to get taxes out of the way. But must wait 'til this week.

There is a bus that comes thru,our little community park, but I have not tried it, because of physical problems. Awhile back they had to take on ,some travels the company wasn't expecting, so folk had to ride along. If you were late then you were late.

Of course there are no restrooms on the buses for disabled folk. So I don't take chances. And I have had allergic reactions, to 'wear-ables'so to speak.

Spoke to a HEW Socialworker for the aging last week, so might get some help that way?! not sure yet. This last week we didn't get our visit hopefully this week.

Have a doggy that needs shots, vet is a ways away, friends are coming to help get me there, but same day as usual visit w. Trek so I have to see what can be done. Need to see Trek, and dog must have shots too. Something will work out! One visit or the other may need to be slightly delayed.

Will catch folks up later in the week!Thank you again, I don't like not being able to see my Treklove!

--------------------
2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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Silverwolf
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Hoping to go tomorrow to see Trek, he is being moved Monday,but I don't know where it is at yet. It is a therapy type home.

They are working to get VA to help,beyond just moving a bed there. I am hoping they get things right for Him, and soon.

Our elderly little dog, needs to go back,in about a month, Her toenails grew,too long, and a bit odd. So they'll cut them again, after the time frame.

I don't try,to cut doggy nails as I had a dear little dog,some years back, tho't I could trim her nails , a back one bled,for awhile and she cried,and so did I. A friend goes to a good groomer so I may try there after the Vet visit next month, Shots etc, went fine so that was good! will check in again later on.

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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Lymetoo
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It was great to see Trek on FB again, telling his jokes!

Praying that things will go well this week for both of you.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Silverwolf
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Hi Lymetoo,and all who remember us!

If VA does what they are supposed to, they will be moving a bed for Trek, to a 'cottage home' . It cost more than we wanted, but he has to leave the hospital.

The 'admin.'of the home, as I understand it,is trying to help Trek, get the VA to pay 'a reasonable amount per month' for his care, while he tries to gain strength and get better. At this point it is still difficult for him to eat, and he hasn't been able to get out of bed.

He normally takes Pepcid, but cannot keep solids in his stomach. it is really frustrating, for both of us. Maybe a different environment will help! We will see what happens.

Lymetoo,and all who are praying, it means so much to us ,thank you!!! Please keep praying!

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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Silverwolf
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Oh, the move is supposed to be tomorrow, Monday. We will see if the bed gets moved in proper time?!

Jus' Silverwolfi here

--------------------
2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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Silverwolf
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Hi there, Silverwolfi here,


And we're waiting and waiting,and we're still waiting, no news of a Bed delivery at the 'group' home yet for Trek, hopefully soon, uhm like today! Will check back in later! Jus' me!

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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hiker53
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Sheesh, Hope this can happen soon.

Keep the faith <><

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Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

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Lymetoo
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Still praying! Keep us posted.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Silverwolf
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Hi again, the transfer did not happen yesterday, but, if they do as they are claiming Trek will be transferred to the group home at aprox. 8:00p.m. this evening pacific time.There is to be a bed,tray-table,and wheelchair waiting for him.

So we will see if it happens, I hope so, he was quite excited earlier today when he phoned to tell me. They had better not be messing with him/us. The VA are supposedly bringing the bed,wheelchair,and tray-table. I am trying to stay hopeful that this is happening!

Jus' Silverwolfi here

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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Silverwolf
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Hello,

Trek got to the 'Group home' last nightmand had to spend time -downstairs- on the transport cot. The rooms are up stairs. He cannot sit up yet,or get out of bed. So they called extra folk from the hospital to help move him up the stairs in/on a sheet no less. No one knew the rooms where up 14 steps.

There is a 'Stair chair' but that doesn't help when one cannot sit up,eventually he got up to his room and got some sleep. He still gets nauseated easily and cannot take solid meds yet,so we will see what the home staff chooses to do.

Hopefully he can start healing and doing therapy now,and maybe at some point he can come home?! It will be interesting to see how it all turns out. Would love to have him back home and the house reasonably clean... time will tell.

Jus' SIlverwolfi here

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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Lymetoo
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I'm so sorry this is happening to you, Silver. I know how much you two depend upon each other.

It's just really sad.

I will pray that he gets better very quickly.

[group hug]

--------------------
--Lymetutu--
Opinions, not medical advice!

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Silverwolf
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Hi Lymetoo, Thank you!, I am praying he can recover quickly with and thru the therapy, and that he will be able to come home.

It would be really odd for me, if he cannot come home at some point.

Will check back later, Trek said a Therapy team is to visit him today.

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

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Silverwolf
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Well one tho't, They wanted Trek out of hospital, And so did we! Well he is out now!!!Expressing gratitude now,that I can think of the word!

His O. T. said if he can work back muscles and gluts[?spelling?] he will be a lot closer to coming home, and he got excersizes to start on!

Jus' Silverwolfi here

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

Posts: 3581 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Silverwolf
Frequent Contributor (1K+ posts)
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He hasn't mentioned how his regular P.T. went yet, because he has been coughing quite hard, they are giving him nebulizer treatments every 8 hrs.


hopefully I can find help to get to see him again soon,and also to get my new[to me] phone running so we can text again, keeps him from coughing so much if we can text,not talk.

I suspect allergies are playing a big role in this, the floors are carpeted, for one thing. We will see what tomorrow holds ..... just silverwolfi here...

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

Posts: 3581 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Silverwolf
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Hello. i got to see Trek, today,we took his larger Wheelchair up to the home.

Even w/ the bedrooms upstairs it is really very very nice,and there are only a few patients. There are three care providers,and a nurse. One of the providers lives there it is her home. Seems Trek is in good hands. Our friend is starting to look for the best place for a ramp here at our place.

When trek gets stronger so his back isn't spasming,and his breathing is better,hopefully he can come home!!!

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

Posts: 3581 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
MADDOG
Frequent Contributor (1K+ posts)
Member # 18

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All I can say is INDIANA it has the best health care.
I think of moving there my self.
MADDOG

Posts: 3995 | From Ohio | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
Silverwolf
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Hi MADDOG, you feeling better? I sure hope so!

The VA has let us down rather. I'll find out this week,if they got things figured out w/ My ChampVA insurance, this is the third time they have stopped my insurance...it gets old.


And regular VA doesn't want to help my fully disabled husband. ,They said they would...big fail by them. But we will fight,and give it over to God,as we do so.

Still we wont give up hope, Trek is trying to relearn,to retrain muscles and such, And to find foods that stay down, the cottage group home he is at helps as much as they can.

Jus' SIlverwolfi here

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

Posts: 3581 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
grandmother
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When you say "back spasms", do you mean charleyhorse type pain? IF yes, lots of magnesium helps my spasms. Also. eating fewer carbs helps me.
Posts: 921 | From CT | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
aklnwlf
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Still praying for you guys! Hang on!

[group hug]

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Do not take this as medical advice. This comment is based on opinion and personal experience only.

Alaska Lone Wolf

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Silverwolf
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Hello,Jus' me Silverwolfi here,

Trek is doing better,and keeping food down, His back is finally better too. It's been difficult because for so long he couldn't keep any foods,meds etc. in his stomach.

Thanking the lord that seems to have stopped,he's lost a lot of weight tho'. Altho' it was needed,that was not a good way to lose weight.

He is hoping to be out sometime next month but we don't know for sure yet. Sometimes PT gets cancelled,and that does not help, and it is expensive,as we are paying out of pocket still . VA was supposed to kick in their stipend ,but is still making excuses. And of course bills are piling up, one was like ***,***.** like we all have that laying around [it is getting ridiculous].

For those of us who follow The Lord,Father God ' owns the cattle on a thousand hills...' So this will get interesting. Since my Trek-love/Tx.Coord is still among the living.I am just taking it one day at a time!!!

Grandmother, the spasms were severe, charley hose like pain,and for so long,Trek' couldn't keep anything in his stomach.At least things are improving!!!

Gotta go for now...Jus' Silverwolfi here...

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

Posts: 3581 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
MelanieLewis
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Oh, I'm sorry you're in such an uncomfortable situation. I am sorry that some doctors do not pay such special attention to such serious problems. This is why a lot of people die because of the lack of seriousness of many doctors. I avoid such hospitals. When you go to a hospital a few times, you realize how serious it is and whether it's worth continuing to go there. It is even noticeable after the billing services. A serious hospital will consider the 5 keys from https://www.seattleweekly.com/blog/top-5-hospital-billing-companies-services-for-2022/ in selecting a billing company and will show seriousness. In such hospitals, maximum attention is given to the patient.

[ 07-31-2022, 06:57 PM: Message edited by: MelanieLewis ]

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i have more interesting things and i wont to realisation this plan

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hiker53
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What do you mean, Melanie. Silverwolf has done everything she can and her hubby is in a rehab facility now.

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Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

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Silverwolf
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Thank You hiker 53,

Don't know what this Ms. Lewis was on about, but we've done what we could, and Trek is trying to get better where he is at now, in spite of medicine mix ups and other issues that can happen from time to time.

And when the Veterans administration bothers to catch up on backpay it 'll help a lot more.

Meanwhile we pray, and wait , and at least he is not in that hospital since the end of April!!!

Jus' Silverwolfi

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2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain.
[ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94
Diabetes*2 Dx 10/'08

Posts: 3581 | From SE Idaho | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
   

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