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Author Topic: It's been a while.....  (Read 3392 times)
TexanSummer
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« on: July 08, 2011, 08:19:36 AM »

Hello all! I know it's been a while since I paid my last visit, but finances no longer allow a constant internet connection.

Things are still touch & go at the moment. Charles started using his fistula a few weeks ago & they are supposed to start the 17 gauge today...should have that cath out by the middle of next week!! His arm is so sore where the fistula is & even on days w/o D, it hurts him...just random shots of pain up & down his arm from time to time.
He had gotten a part time job delivering pizza's 2-3 days a week, but had to leave that due to the pain & exhaustion after a couple of hours (2-3 flights of stairs will do that I guess). We are kinda between homes at the moment, but it's given us an excuse to go camping for the 1st time in years (he loves camping) & it's actually kinda nice sometimes.....aside from the extream heat that is...it's been in the upper (way upper) 90's & low 100's for weeks now it seems! Between that, the occasional motel room & friends' places, we're doin' ok...it could be a lot worse! My aunt offered to keep our daughter for the month of July, so we took her down over the 4th weekend....now that was interesting & yet fun!

We went back to my hometown (Galveston, TX area) over the 4th of July weekend with a couple of our friends & our 6 y/o daughter. We stayed at my Aunt's house (she has a peach orchard....end of the season, but still very nice). Got there late Friday night & on Sat., she (Aunt) gave our friends & us a tour around the orchard & the little shrimping community she lives in. We went to my dad's mechanic shop to have him look at our car (it had been acting up a bit for the last month or so) & he replaced a battery cable. Then we went to the pharmacy where we found out that Charles no longer has Medicare since he is now on Medicaid....doesn't make a whole lot of sense, but at least he's covered. After that, we stopped by a grocery store for some sides for dinner. Allyssa (our daughter) was getting tired, so Charles picked her up & carried her...we think that was when he lost the only key to our car (one of those with the chip in it)! I have another key, but it has no chip & won't actually start the car. I had to call my aunt to get the 5 of us....we all searched the store a number of times, even out to the parking lot, & with the store's manager, maintenance crew, & other staff as well.....but no luck. Naturally, since it was the holiday weekend, nothing could be done until Tuesday....so I had to call in to work & so did our friend's wife....the year model our car is prohibited us from getting another key from anywhere else but the dealership due to programming....fun.
Luckily, my aunt & cousin were able to loan us a car for the rest of our stay so we could salvage our trip. We went to the beach on Sunday (kiddo didn't want to come so she stayed behind) & it was nice, but Charles just about went mad not being able to go swim (cath & all). That evening, my mom & step-dad took us all to dinner & that was nice. Monday (the 4th) we went back to the beach (with the kiddo this time), made sand castles, then went to my dad's & swam in his pool (as if we weren't sick of water as it was) with my niece, nephew, & brother. I got to play with my newest niece (she's 2 months old & I hadn't gotten to see more than pic's since she was born)...she's such a doll! BBQ at dad's, then back to my aunts to clean up & go see the fireworks at the Kemah Boardwalk....those were really nice!
Tuesday, I called the dealership & got things rolling in motion & had our car towed there.....wow....they didn't have the key, but they were able to have one delivered from another dealership within a couple of hours...then they had to ship the key along with my door key back to the dealership that had the key originally come from (the one the car was at didn't have the key cutting machine & the one that did, didn't have the programming thingy) only to have it shipped back for programming. By 6pm, we had our car back! Whew....what a day (what a weekend!!!)!!!!
Needless to say, Charles didn't go to D until Wednesday (partly due to stubbornness & wanting his clinic & not one in the area we were in).....you can imagine how that went after 4 days (he went to D on Friday before we left). They didn't have to take off much fluid (he did really well on that part), but, naturally, he felt dizzy, tired, & very confused afterwards & for the rest of the night....I could just kick him for that, but what can I do other than gripe at him? lol

Hope everyone else had a good weekend & hopefully I won't be away for so long again....I really enjoy being able to come here & ask questions, vent, & read your experiences...it helps out so much!
Logged

Wife of Charles --
   diagnosed with psoriasis in 2000?
   no diagnosed kidney issues until 3 weeks ago
   diagnosed with ESRD 2/24/11
   found out birth defect of kidney valve was cause 2/28/11
   started dialysis  3/1/11
   I still have a level head....most of the time
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #1 on: July 08, 2011, 09:06:09 AM »

 :grouphug; It must be so difficult to not have a home right now. I know you'll make the best of whatever situation you're in, but wish things didn't have to be so hard.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
jbeany
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Cattitude

« Reply #2 on: July 08, 2011, 10:15:05 AM »

 :cuddle;
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

looneytunes
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Wishin' I was Fishin'

« Reply #3 on: July 08, 2011, 01:01:05 PM »

Sounds like quite a little jaunt.  Sure hoping things go more smoothly for you for a while.   :grouphug;
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"The key to being patient is having something to do in the meantime" AU
Poppylicious
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« Reply #4 on: July 08, 2011, 02:15:36 PM »

Babies, sandcastles and lost key adventures?  Sounds like a lovely weekend!  But I didn't realise you're between homes at the moment.  I really hope that things start looking up for you all soon.

*huggles*
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
TexanSummer
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« Reply #5 on: July 18, 2011, 06:36:09 AM »

Thanks all for your concern....we are fortunate enough to have friends with lumpy couches at our disposal, so it's not all that bad....we still have our car & I am still working so that's a plus. Our little one just returned from DisneyWorld (with my Aunt & Uncle who still have her) so we're happy that she had a blast....hubby & I have discussed having her stay there for another month or 3...depending on how things go here....she doesn't deserve to have to deal with this stress at her age...should be all fairies & candycanes for her right now anyway....it's killing us not having her with us, but she's happier at the moment at least. We'd move back closer to my family, but the jobs are even more scarce there than they are here, even though the homes are more affordable there....catch 22 I guess! Hubby has been going bike riding with a friend of his & is cath free for a week today....we went swimming the other day & he couldn't stop doing cannon ball's in the pool....he's just a big kid!
Thanks again!!
Logged

Wife of Charles --
   diagnosed with psoriasis in 2000?
   no diagnosed kidney issues until 3 weeks ago
   diagnosed with ESRD 2/24/11
   found out birth defect of kidney valve was cause 2/28/11
   started dialysis  3/1/11
   I still have a level head....most of the time
looneytunes
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Wishin' I was Fishin'

« Reply #6 on: July 18, 2011, 11:18:52 AM »

 :grouphug;   I'll just bet that water felt wonderful!   :clap;
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"The key to being patient is having something to do in the meantime" AU
TexanSummer
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« Reply #7 on: July 18, 2011, 03:44:47 PM »

Boy, when it rains, it pours.....found out on my way home from work that my last day will be on July 28th.....just under 2 weeks from now.....don't know what to do now....hubby is going through a serious depression....thinking he's a failure as a husband & father because he can't help. I don't know what to do any more....jobs are so scarce here....thought about going back to where my family is, but without a place to stay....can't put our daughter in this situation....freaking out....not so quietly any more....
Logged

Wife of Charles --
   diagnosed with psoriasis in 2000?
   no diagnosed kidney issues until 3 weeks ago
   diagnosed with ESRD 2/24/11
   found out birth defect of kidney valve was cause 2/28/11
   started dialysis  3/1/11
   I still have a level head....most of the time
okarol
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Gender: Female
Posts: 100933


Photo is Jenna - after Disneyland - 1988

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« Reply #8 on: July 18, 2011, 09:03:27 PM »

 :( Jeeez you need some GOOD news.  :cuddle;
Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
TexanSummer
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« Reply #9 on: July 22, 2011, 08:59:40 AM »

Well, it looks as though we will be moving back to just south of Houston....where I grew up. My dad has given us a place to stay (part of his garage & kiddo has a room in the house) for a few months while we get back on our feet. It's for the best....there is a much better family support system there (where as here in north Dallas, there isn't....but that's an entirely different story...lol). So that is a little bit of good news. We will be heading out the day after my job ends. I just hope things go smoothly! We get to keep our 2 dogs in a fenced in area (that we have to build first thing) at my grandma's & our kitty gets to come with us....yay!!! we don't have to get rid of our pets!! Hubby is already getting set up for D....he gets the 4pm-8pm shift, & it's not very far from where we'll be staying. It's not much, but it's a start. We have the moving truck scheduled & now we just need to be sure we have enough $$ saved for the fuel cost to get our car & the truck down there. We have my brother & one of hubby's friends helping us load the truck at least, but when we get to our destination, unloading will be even more fun with just the 2 of us....so far anyway....lol.
This is going to be very interesting, to say the least! Hubby & my family don't get along very well, but hubby wants to be sure that our daughter & I are closer to my family in case something goes horribly wrong with him & he's willing to try to work things out with the family (so are they with him). It's our best & only option for now. Wish us luck!
Logged

Wife of Charles --
   diagnosed with psoriasis in 2000?
   no diagnosed kidney issues until 3 weeks ago
   diagnosed with ESRD 2/24/11
   found out birth defect of kidney valve was cause 2/28/11
   started dialysis  3/1/11
   I still have a level head....most of the time
okarol
Administrator
Member for Life
*****
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Gender: Female
Posts: 100933


Photo is Jenna - after Disneyland - 1988

WWW
« Reply #10 on: July 22, 2011, 09:17:43 AM »

 :2thumbsup; I am so glad you've got a plan. Best wishes that all goes well!  :bestwishes; :bestwishes; :bestwishes;
Logged


Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
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