Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
I despise TBD's in all their gory guises.
My husband has spent since Dec. 26 mostly house bound from a 'Migraine'.It turned out to be *Trigeminal Neuralgia*.
[I really believe that he has Lyme and Bart' as I do].
He ended up in ER Jan. 5th,and they Dx'ed the *TN* issue.It was like pulling hens teeth to get him to go get some help.
Tho't I would lose him before he went to ER,His BP in the 185-200 range[top], over 120- 165 range [bottom] is to darn high for anyone.
He is across the parking lot,at the church,he didn't preach today as we have a 'guest speaker revival' bit going. We live at the Parsonage right now.
Even doing the AM. service worship exhausted him. I am concerned about him,as he tends to overdo and tough things out.
I haven't been able to go to services lately,and I've discovered'heaven help the shut- ins around this town. We were even told that when I cannot make services 'out of sight is usally out of mind'... gee thanks.
As usual [ they have a rough time lately], both my folks have been ill... Momma is now on Dialysis after spending the week before Christmas in the Hopsital.
This was just after Dad got released from Hospital and extended care for a parital Colonechtomy [hes had cancer a few tiems so we were all concerned.
Moms last living sibling died Dec. 8th ,from Stroke,heart problem issues, and 'Fibromyalgia'.
He was my fav' uncle. I believe my family[mom dad,me siblings] and my moms family prolly all had LD.
I apologize for dumping a boo hoo glum vent...I am just beyond it.
There were arguements at the church over the Christmas play, and some folks still acting odd [ sheesh could they just maybe try to be a little bit mature?].
We lost our counseling work funding[no paycheck since July],and are now dependent on TxCoord-hubbys Minstry job.
The Church folk can be sweet,but also fickle and more changable than the weather.And I am so very...not good... at handling stress.
I am stuck here,having an Immodium day/evening, and my left calf muscle keeps trying to Charlie horse up[yup I'm keeping fluids in me as much as I'm able].
Now,some persons,in the area where I live,are making it that I am selfish because I cannot drive[not by choice mind you,but a birth defect,and also TBD issues].
If we don't look all that sick we must just be lazy...
-------------------- 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 |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear SilverWolf,
You sound like you could use more than one.
Your plate truly runneth over.
Remember, people see what they want to see.
More often or not a reflection of themselves.
When someone calls you selfish one can only wonder what the motivation is.
I am sending you prayers of comfort and support
for your family and yourself.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
posted
i hate that...."you look fine" look......people give either we are crazy or lazy.
I agree ...people see what they want to see
you have a better day!!!!!!!! mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
| IP: Logged |
posted
Silverwolf, sweetie. How brave of you to share your mood. I understand that hollow feeling. Today is just not a good day for you.
I hope you will soon see a light at the end of your dark tunnel. I have been there so many times I think I've earned frequent flyer miles. I know they reserve a seat there for me.
I hope you get out of there for a short vacation! Hugs & kisses to you. Posts: 81 | From Iowa | Registered: May 2007
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Silver, so sorry that things are so rough right now. I hope better days are ahead for you and your husband and parents.
You've got plenty of hugs and sometimes hugs hurt me, so I thought I would just . I hope you can just your head at those church goers moaning and groaning.
Use you strength to take care of your husband and your parents and you. The rest will just have to depend on someone else for now.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Andie', Geneal ,DakotasMom', Just Don ,Mtree ,Mary' ,and Map' >>>>>,
Helloooo and Thank you for the hugs and kind words!
I should have explained that my folks live about 15 hours from us in a different state. My Brother is staying w/ them,since this last fall[07].
My brother is not well either [EBV,tendonitis, and Mycoplasmic Pnuemomae issues]. He is still able to drive and so has been a big help to my folks after surgeries etc.
I of course get very concerned about my family,because of the serious nature of some of the illnesses they are fighting.
And between My family relatives, my Hubby TxCoords family relatives,and our 'adoptive foster famillies' [ 'God Parents, and Folk who've "adopted" us and are sometimes as close/closer than our own emotions wise] there have been at least 12 deaths since 2000.
Now I know that sadly, this happens,especialy when we reach a certain age,as those around us grow elderly. But some of these family relatives,and friends weren't elderly.
I guess between the deaths and illnesses,and far too many Church splits and closiers, I've lost my coping skills [Maladaptive stress disorder from the Lyme didn't help].
We seem to get 'sent/called' to Pastor Churches, famillies that are hurting and deeply troubled.Too many long stories to go into here.
And sometimes I just get beyond overwhelmed w/ all of it.
TxC' and I have often tho't of writing a book. If we do some chapters will prolly seem sorta 'As the Stomach Churns' Soap Operaic.
Then there'd be my favorite title "I Know My Name 'Cause It's on My Bible...Ooops I've Lost My Bible...", and we'd add TxC's interesting..." Honey,have You Seen My_____?,Or Swimming Thru the Storage Boxes".
Okay my brain is burping and bumping along here so I'll stop for now.Thanks again so much for y'alls kindness!!!
Dont' mind me if I say Y'all,You guys,Each of you,or even an occasional odd yu'uns,or You'se guys.
We have been blessed w/ family and friends in several states,and spent about the first 6 and a 1/2 years of our Married life in Louisiana[will be 30 years late this fall].
Just Silverwolf tryin' to Adjust my Attitude.
-------------------- 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 |
God doesn't give me more than I can handle, some days I wish he didn't trust me so much.
I also say,
Some times I am a Rock and most of the time I am the window (totally all in pieces)
Smile - it will get better.
-------------------- OK...I'll play your silly games.
Finding my happy place.
Brenda-Lee Posts: 126 | From Florida | Registered: Aug 2007
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Updating w/ apology for the length of time in answering again.
Sat. Jan. 26th found us in shock,when the head of our Church Board came to warn us privately that there is a move afoot to remove us as church pastoral couple.
The old: 'you don't look sick,you've had all them antibiotics too...so you are just faking it,and refusing to help our churh in any way' reared it's ugly head at me.
Now because of TxC's[hubby] eye issue..he obviously,cannot meet their needs and wishes. According to the church folk that is.
Great instead of fighting to keep our home, against the Mortgage idgits,we sold it,at a loss, to move to the parsonage...so uh...now what?
Then Tuesday,Jan 29th, found us hurrying from an eye appt., to drop our pets off w/ our vet kennel,pack, and go to Salt Lake to an Eye surgeon specialist.
TxC's Eye issue is -not- the Trigeminal problem that the ER dr. at the local 'Duckspital told us it was.
Hubbys eye pressure should have been at 10 to 21,it was up to 66. No one in the Duckspital or clinic bothered to check,all had been told of his eye occlusionfrom July '07.
The Specialists in SLC,said their was so much blood that they will have to do surgery,to even see how to clear the whole mess up.
The soonest they could get him in was this coming Thursday the 7th of Feb.
***Maybe TMI? He will be having three slits put in the white of his eye.One is for suctioning out blood,and a huge clot at the back of his eye.
A second slit to insert a liqui-gel to keep pressure even.
The third insicion,will be for " Chompers " a specific type of medicine to help clear away more blood,and veins that shouldn't be there.
Because of all the issues and misdiagnosis TxC/hubby developed Glaucoma and a Cataract.This must all be removed corrected etc.
Course Txc' may have the Lyme/Bart Issues like I do. With no insurance,and no funding to speak of...this will be interesting.
Haven't been able to get another LLMD/Nd as of yet. TxC hasn't been checked yet either.
And then there's the contingency in the 'church' that wants us gone...and no counseling check since July '07 [the funding was cut].
Well the hospital/eye clinic in SLC will work w/ us...thank Creator,even so with 30% knocked off the bill it will still be over 11,000 dollars.
-----Thanks to each one who has offered hugs and kindness,thanks for being here and for 'listening' if you've read this far.-----
[" What's that ya say Doc? We aren't supposed to get stressed? Do tell..." ]
Well it's jus' me, weary SilverWolf'...
...tryin' to keep my muzzle from draggin' the ground. Snows-no-fun if it stings yer chin...in the wind.
Uhm Creator...could TxC and I have a break for a bit please???!
-------------------- 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 |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Hey silverwolf missed ya.
I just wanted to let you know because you have been dealing with this pretty long too.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
SilverWolf, wow. Sorry to read it- I hope you stay in the pastoral place and all is okay!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Wow,,,so sorry for all your troubles!!
If it all ends for you here, an appropriate closing sermon would be to print out Dars Toy story and use it as the basis of the last sermon!!
You never know, it may sow the seed of understanding for someone to follow!!
I surely HOPE your next calling is to someplace they understand and support you!! Maybe someplace that is MORE tick knowledgable!!still--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
| IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
The pastor and his wife at my church are going through the same thing, Silver.
She suffers from bipolar disorder and the "folks" haven't been very understanding.
I haven't been to church in 2 months because I was told that if I didn't have good news for the congregation about my Lyme disease then they preferred I say nothing at all.
I am looking for a new church.
I hope your troubles resolve soon. God bless you.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
bettyg
Unregistered
posted
silver; I'm sorry I missed your earlier post until now!
wow, when it rains; it pours!
between your story and lymeladyny; it's the pits of people's lack of COMPASSION IN THE CHURCH, and NO understanding! hog wash; stinks big time!
give txc my love; he/you definitely are in my thoughts and prayers for his upcoming surgery this week.
I was trying to use the SEARCH at top and type in FINANCIAL BURDENS medical subject line any date leave membership no. blank UNLESS YOU CAN FIND MELANIE REBER'S MEMBER NO. .... she compiled it.
hit send
otherwise, it's in my newbie package; best to bring the lengthy DETAILED INFO out, and see what is there that can HELP YOU/TXC in what you are going thru!
I'm so sorry that life sucks for you both right now with continuous stress on you both on YOUR health issues and ALL OF IMMEDIATE FAMILIES TOO!
IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Thank You <<<<< Lymer Family >>>>> for each response.
We leave for SLC tommorrow,TxC's Eye Surgery is Thursday,don't know the time yet.
I am scared,and it is snowing...alot.
Think I am just on Overload w/ Lyme brain,and all the family issues, and job/move issues, Plus TxC's surgery coming.
Friends from the other board I frequent [not a Lyme board,but found out about Y'all from them]. have told me that I am letting stuff get to me...
They can tell because my threads and replies are getting longer and longer...which can be confusing.
Not all of them are Lyme Literate,but most are trying to learn.
I do take Vitamin B12 Methlcobalamin,tho' am unfortuneatley out...hope to get somemore after Treks surgery.
It does help stave off headaches and Myclonis episosdes for me.and I can tell when I don't have it.
We'll be looking up info and such asap when we get home.
I am a bit,shook up and spacey right now,from all the stress.
Your kindness and understanding is greatly apperciated...Thanks to each of y'all again.
Will update as soon as we get back home,not sure how soon after Thur.Surgery/Friday follow up we can travel.
Love from 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 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
bettyg
Unregistered
posted
silver, HAVE A SAFE TRIP; hope the weather is good for your drive.
IP: Logged |
posted
Praying for you Silver. Have a safe trip. Keep us posted.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by Silverwolf: Thank You <<<<< Lymer Family >>>>> for each response.
I do take Vitamin B12 Methlcobalamin,tho' am unfortuneatley out...hope to get somemore after Treks surgery.
Love from Silverwolf
If intrinsic factor is shot from years abx's then youll need b12 injections dont underestimate this I did and spent a over a year aching badly and skin changes wrinkiles etc eyes?
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Helloooo <<<<< Lymer Family >>>>>.
We are back home,got in lastnight,harrowing in itself after dark.
Thursday's surgery went well,tho' the whole thing was rather gory.
The three incisions were made,the large clot tat the back of TxC's eye was suctioned out,and so on.
A channel was made for drainage so the eye wont get the pressure back up.
Pressure should be 10 to 21,it went up to 72 before they could get going on surgery.
Friday,at post surgical check up ,the pressure was climbing again.
It was discovered that the incision flap form one of three incisions was filling w/ fluid.
The fluid should have been draining down the new channel. So the Drs. forced it to drain.
TxC,endured the pain of having his eyeball, pressed on and literally poked w/ a long wooden q-tip.
This was very very painful,on an already sensitive eye. ANd really gruesome...but it worked!
His eye pressure was down to 12,by Saturday.We go again to SLC this coming Friday,to be certain the eye pressure stays down,and see that all is well.
If the new eye fluid channel wont stay open,a shunt will have to be placed. Trying the natural eye channel is less invasive,so hoping it works.
TxC, will prolly eventually still need cataract surgery. They didn't want to do,more than absolutely neccesary at this time ,to an already traumatized eye.
As to our current 'job' situation,everyone is actin like nothing is wrong. We came home to find two folk in the hospital [and of course they wanted TxC to go see them after a.m service].
AN elder drove him up to hospital...since his eye is still oozing fluids,blood etc...Sorry about the TMI. He cannot drive as he ias back on his meds.
We are saddened by all this, and trying to walk in love. TxC as far as my thinking,is going above and beyond the call.
Personally, I am just staying away and praying,lest ornery words come a flood from my lips. I've been givnig those 'orneries' to my Creator!
Gotta close for now. Thanks for all the kindnesses and input. I'll be asking about B12 injections in Med Q's.
Love from Wolfn'and TxC 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
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Roll Eyes]](rolleyes.gif)
![[rant]](graemlins/rant.gif)
![[group hug]](graemlins/grouphug.gif)
![[Mad]](mad.gif)
![[loco]](graemlins/loco.gif)
or lazy.![[Smile]](smile.gif)
![[Big Grin]](biggrin.gif)
![[shake]](graemlins/shake.gif)
your head at those church goers moaning and groaning.
![[hi]](graemlins/hi.gif)
![[woohoo]](graemlins/woohoo.gif)
![[dizzy]](graemlins/dizzy.gif)
![[bonk]](graemlins/bonk.gif)
]
![[kiss]](graemlins/kissing.gif)
![[Embarrassed]](redface.gif)
Printer-friendly view of this topic