me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Silver sent me a PM this morning. It sounded like she was just trying to take as much care of herself as possible with everything going on and continues to be very busy. I will send a PM back letting her know y'all are wondering about her and TXCoord.
She asked for prayers if people pray.
[ 07-02-2016, 10:55 AM: Message edited by: me ]
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi there, <<<<< Tinny, Lymetoo, and me >>>>>,
Just went to medical, and have been PMing a bit.
So far we've escaped the flooding, there have been some very serious flood issue, on the other side of town,and a couple of serious vehicle accidents too.
More rain is coming over this weekend, so we only be out when/where absolutely necessary.
TxC's MRI is this Tues.,this Thur. I have a CT,scared info on Medical board. Then mid-month TxCoords surgery. End of month,more appointments and so on for both of us.
Still no word on when dad can be buried, they are interminably slow with the paper work. Driving us and close relatives to distraction that none of us needs.
Please keep us in your prayers,and thot's, as we continue to deal with all of these matters. We are trying not to be overly stressed. things are very difficult right now.
Thanks so much for the post, I'm sorta only half here right now,and TxCoord is stressed but trying hard to remain calm.
Just Silverwolfi and TxCoord, standing in the need of Prayer.
-------------------- 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
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posted
It's really something when your contact list starts with "Dr."
It is a little daunting to look at our appt calendar above the laptop and seeing date after date after date being filled with one of the two of us having to go to a doctor, clinic, or hospital.
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hugs to you!
Please write on your calendar that you have lots of folks who care about you and will be praying for you so when you look up that is what you see first.
Then you can use a red heart on all the days that aren't already committed to other things, blocking them off.
Then DON'T commit to anything else this month! Remember the saying...
Don't do today what you can put off till tomorrow.
Ok, maybe that is a little backward, but then, so are you! And me too!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Just read your post in medical. You got some real good advice there. So good it was that you'd have thought I given it. HA!
YES, I'm kidding. Trying to make you laugh!
The only think I can add is that I am terrible when having to do tests and procedures.
While I am waiting for them I feel like I'm locked in a cage and people are poking sticks at me through the bars. Nothing like REAL torture, huh?
The one thing I've noticed though, when it is finally over I realized I've wasted weeks in a state of turmoil worrying about something that maybe took one hour of my time to do and it wasn't nearly as bad as I thought it would be.
I wish then that I could go back and take away all the stress and misery I caused myself and get those days back to being "normal".
Since I can't go back in time I have to accept the fact I caused myself to waste away that precious time that could have been much better utilized.
Whatever you can do to not stay focused on the appointments, please do.
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Tinny >>>>>,
Thank you for the replies,and for the post in the first place!
Luckily we didn't know about my test 'til very recently [can't get worried over stuff we don't know .]. And there is great advice about it on Medical board.
I am hoping it is the simple form of Abdominal/Pelvic CT. It depends on what they are seeing,and wanting to check. I am hoping they can see clearly enough w/o having me shift to several different angles.
Can't do anything about it right now tho', So I am trying not to worry.
Hoping the Myoclonus doesn't act up,like in December. If they can help with keeping my head and neck slightly elevated that may ease things. Last CT I had the machine was higher than the MRI I had in December,as far as the roundness. So that may help as well,if it is not as narrow.
I am staying on B-12 even as I taper off of other things for a bit,that often helps,and I keep up with the magnesium. So if this helps find the issues,being non-invasive,and there is no Myoclonus problem,that would be a huge blessing.
Both TxCoord and I appreciate the prayers,and cyber hugs, I don' have words to explain how very much!
This LymeNet family is important to me! Y'all bring hope, in the middle of hard times.
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 Posts: 3581 | From SE Idaho | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I heard from Betty G. She sends her best and you will be in her prayers for sure.
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi there <<<<< Tinny' >>>>>,
Thanks for the message from Betty G.!!!
Please send her our thanks,and cyber hugs as well.
<<<<< Betty G. >>>>>, Thanks so much for the tho'ts and prayers!!!
For each Replier,and Message Sender ,TxC' is at VA Hospital at the moment, undergoing one more attempt t an MRI. They are hoping they can see around the metal parts, in the knee,and the bolts, which tend to bounce light around and white out everything.
His Surgeon wants as much info as possible , before they remove the 'mystery shard that has been poking him from the inside out, and they are trying to find the missing " button ", that should be under the knee cap holding everything in place.
He has also had to go to VA hospital Records office today, as something odd showed up on an old surgery report,from his Rt. Common Illeac aneurysm repair in the spring of 2011. For now lets just say it is very odd, 'til he and the surgeon can find out more info'.
Depending on how long,the Knee MRI takes, and the Records info', he will do some quick necessary shopping, get my 'Barium shakes' [for Thur. CT] and come home.
Tommorrow we will be trying to fix a serious leak in our shower, it literally seems it rains and pours...and w/o much water pressure.
Then next week is his surgery, of course he,and I , my siblings, and close family members/friends are still waiting on the paperwork for dads, burial too.
So for those who are praying, Thank you,we can use it now more than ever.
Hugs back to you <<<<< LymeNet Family and Friends >>>>> !!!
Silverwolfi here, and a Hello from TxCoord too!
-------------------- 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
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi there <<<<< Lymetoo >>>>>,
Thank you, for the prayers and hugs,things are still crazy here.
We weren't able to get the shower fixed yet, and the tub is old fashioned 1980's garden tub, difficult to get into and out of. I tried today,we have a bath bench. I cannot sit down into the bath for health reasons.
The bath bench fits awkwardly to say the least,but I did so so with my 'shower', in the garden tub. txC' is trying it too. We'll try the shower repair for Friday, things were to hectic today.
Tomorrow is my test, no food or drink from 9:00 a.m 'til after my CT which starts at 1:00 p.m aprox. i get a small light breakfast before 7:00 a.m, do first Barium 'shake' at 7:00, and no food or drinks after 9:00a.m.. except for the second 'shake' at 11:00 a.m.
We'll have snacks waiting for after the CT scan is done,in our ice chest.
TxCoords, second MRI was not a success. to much metal, bolts, and other issues. The light bounced off of things,like the first test.
TxC' got to records,to learn,about this oddness from his Aneurysm,only to learn they are suddenly not there.... Missing again. He is not happy, His surgeon is not happy,and the records keeping folk are not happy.
I'm sure there has been some interesting phone calls between the VA district here,and the VA district in Salt Lake city,who don't seem to want to share info' from TxC's former surgeries.The US is divided into five VA Districts.
We have been trying to get the actual surgery records since his surgery in April 2011, to repair an anuerysm of the Right Common Iliac Artery. Which occured as a result of his knee surgeries.
There are some post surgery notes, but no actual surgical notes, which were supposed to be included. And last month during a pre-op visit, they suddenly discovered some *notes about an Aortic artery problem* Which neither of us was ever notified anything about ever.
And now *that set of notes* is missing, it is getting really aggravating,especially in the midst of all the other issues we are facing. We and the surgeon would like to know what it is about. Or if it is another VA Mistake.
No news yet,about paperwork, death certificates and so on for Dads burial. That is so frustrating for all of us.
I will be glad when my test, TxC's surgery,and both our coming appointments are done,and we know more what is what. That's TxC's post operative appt.,and My Urology appt. end of month.
Feels like on of those, old movies, Jack and Jill where lost up the hill,and meanwhile back at the ranch, the creek dried up, and there was a stampede... And they's a tornada' acomin'.
Time will pass,and we've weathered other storms with the help of the Lord, that true Source of Love,and Light,and Life.
Doggy want his day... er Dinner...so I'll check back later.
Jus' Silverwolri here
Meanwhile, trying to cope,and not get overly worried about things we cannot control.
-------------------- 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
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Jus' Silverwolfi'...er... not wolri here.
Seems the words don't want to stay where I wanted them to be on the reply above.
Jus' me Silverwolfi
-------------------- 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
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So glad to see you are hanging in there and also keeping us updated! We worry about you!
What a bummer about the MRI's and notes! Good grief! Hope you get what is needed ASAP.
Don't know what they cost new, but I bought a shower chair for $5 - maybe a little less- at a 2nd hand store. Would that work better for you than the bench seat?
Not just for now, but for in the future too?
Sounds like an unpleasant diet & routine for tomorrow. But, just think! In less than 24 hours that will be all done! Yea!
I haven't had that barium drink for over 20 years now, but when I did I remember having to rush home so I could spend the next few hours on/off in the bathroom!
Might want to slip that little nugget into your plans so you will be ready in the event you are as lucky as I was! HA!
Lettuce no how you did tomorrow when you get time. OK?
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Tinny >>>>>,
Made it thru the CT,thanking the Lord I had no serious issues,during test,of IV contrast.
The Barium shakes however,stared me zipping to the restroom frequently with the first one. I am wondering if I lost the last 15 lbs, that I need to lose. And I'm sure it is not over yet.
Keeping hydrated,and trying to just relax now that it is over. Hopefully if anything showed in test,I'll get a call from the PCP, fairly soon. Minimum 72 hours. We don't see the Urologist 'til end of the month.
Hopefully the Barium side effects will stop fairly soon. The contrast IV was strange, odd taste in the mouth, strange warm flushing from ears on down. Glad it's all done!
TxCoord, goes early next week for a last pre-op. and then in a couple days after it,his surgery. Hopefully they will have an answer about the 'disappearing notes' by pre-op time.
Thanks to each Replier, for the prayers, good tho'ts and wishes, and cyber-hugs. Y'all are amazing,and a huge help.
BBL from Silverwolfi
-------------------- 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
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
GREAT! It's over for now. Just asked about it/you on another post, then saw this one on down the line. So I'm very glad it wasn't horrible!
And yes, that "side-effect" isn't nice. Hope it clears up real soon!
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Tinny >>>>>,
Thanks for checking back in with us, the side effect is still acting up, but seems to have reversed itself, even tho' I am getting lots of water, and other liquids.
Beginning to wonder if Barium is a hidden secret formula product in Quik-crete. Aarghhh...
Course then things get pressing,and so off to get my D-mannose to keep that from getting to out of hand. Again, I am so grateful for LymeNet and the info' here!
I know sometimes medical tests are necessary, I'll be so very very glad when all of this subsides. TxC' and I hope that the test gives us some info' to get things calmed down.
We are praying I don't need a surgery, TxC' and I have both had to have major surgery in the same year in the past,never fun. And his is coming next week.
We'll see what turns up,and keep giving this over to the Lord.
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 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi there <<<<< Lymetoo,and Tinny >>>>>,
What can I say, my system is weird,oy, weirdly wired 'Wolfi here. The IBS type symptoms have been in full swing, first one way and then the other.
The other now being the concretions, and it has burned , oh yeah...lots of fun...NOT!!!
We appreciate being kept in your tho'ts and prayers.it is going to be an interesting week.Just a few more days,and TxCoord will be having his surgery.
His last pre-op is in a couple days, and we are still trying to find out what time the surgery is to be. A friend is driving us to hospital, and needs to know.
Who knows if they'll have the reports on his other surgeries so the Dr./Surgeon has them to refer to?...! Parts and pieces from surgical reports keep appearing and disappearing. It is beyond ridiculous.
I am praying for TxCoord for protection as well as speedy recovery. And that the Surgeons hands will be guided by the True Source of Love and Light and Life... in Jesus name! Surgeon is way cool as we used to say.
Will keep updating when ever we are able, saying a prayer for our little PC to keep working too, it is old now by computer terms,and needing cleaning and repairs, when time and finances allow.
No new news on when my father is to be buried,as yet. Right now,life here seems to be all sorts of stages of waiting.
Better close for the moment BBL
Jus' Silverwolfi
-------------------- 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
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posted
Trust me folks (being the music meister) I hear the words "Day by day, oh, dear Lord, three things I pray To see thee more clearly Love thee more dearly Follow thee more nearly, day by day."
Cuz we make plans and life happens. Thank you all for your support of us!
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hello <<<<< Tinny, and Those Others LymeNet following this >>>>>,
Well our saga continues, boy it'd be nice to have a few boring uncomplicated days coming.
TxC' is at pre-op, getting blood type crossed and matched for surgery in a couple days.
Our shower is defunct, and wont be properly fixed , til end of month. We'll be using the old garden tub,in back restroom, and one of those shower wand hose thingies. It's the bathroom with the safer toilet that doesn't shoot shrapnel.
we still don't know,what hapened to the lost and confused surgery records,and whether, the last surgery TxCoord has was on the Right Common Illeac or the Aorta???! That'd e really important info' to have before the upcoming surgery.
Hopefully, they'll have some info' in Records office this A.M. will try to update if we find out anything. And TxC' is also trying to confirm surgery time. Come on VA folk,we have a driver that needs this info'. We should get confirmation on the surgery time today.
And I have been waiting for a cane to arrive since early Friday,it has not arrived. So I haven't been able to try to go anywhere. Not real happy about that.
No word about Dads burial,or any completed paperwork yet. Supposedly things are being worked on...
Wont know about any test results from my CT for a bit yet, so it's a continuous waiting game.
That's where we are right now,hope y'all are having some better days.
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 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
UGH .. so sorry to hear .. It's just one thing after another for you guys. Praying that you get that surgery time very soon.
and the bathroom .. oh my .. what great timing!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Might want to ask Jordana if you can borrow her gerbil wheel. It will help you all keep going around in circles when days are slow and assist you in getting some exercise too!
The days will get better. My luck is about like yours, but today I drew the long straw!
Went to 5 places to do 5 things (really pushing my luck) and only one thing I couldn't get done, and three of the other four did what was needed after giving me a medium time about it. (That's one step above a hard time.)
Only one "really hard time" was experienced and it was sooooooo bad it was ridiculous!
So things are looking up here. Will send you some of my "better luck". OK?
posted
"if it weren't for bad luck, I'd have no luck at all! Gloom, despair, and agony on me!" (tip o' the hat to HeeHaw - snicker, snicker)
As far as what I found out today . . . .
Nothing - no thing! Same day surgery can't tell me what time Wed because they can't tell scheduling until 24 hours before. What?!?!?!?
Visiting with Pre-op was entertaining - NOT!!!
"Oh no, Mr. TX, those records the doctor was reading from went back to records for them to scan into your records. It may be a few days (weeks, months, decades - who knows? The Shadow Knows!) before they are there.
(I need an Graelmlin pulling its hair out by the roots!)
And as they used to say, "Stay tuned! Same Bat Channel! Same Bat time!" And I'm thinking "yeah same Bat ($%^".
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
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