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babycakes-
Regular Member


Date Joined Nov 2009
Total Posts : 94
   Posted 12/1/2009 4:44 PM (GMT -7)   
 
 
CRAP. I Just Wrote A HUGE Rant And Then It Disapeared. MADNESS.
Had My Ultrasound - Came Back Showing Nothing New. Was Testing For Hypermobile Kidneys - I Was Emailing A Lady In England Who Thought She Has LPHS - Turns Out It Was Hypermobile Kidneys, And I Emailed Her Urologist And He Said That A Ultrasound Wont Show Up Kidney Movement. My Urologist (Whos World Renound) Said Ultrasounds Are Heaps Better Then IVP's - What The English Doc Said Is Used To Diagnose - And Nobody Will Refer Me To Have One/ As Im Only 19 And They Are Worried about Radiation. I Dont Know, The Radiologist Said My Kidneys Tucked Up By My Liver Right Were It Should Be, And That Hypermobile Kidneys Sit Lower Normally. GAH. I Guess Ill Listen To My Urologist - So I Dont Have Hypermobile Kidneys.
 
Goh And Ontop Of Everything Im SO FRIKIN TIRED. I Fall Asleep about 3am,  Then The Pain Wakes Me Up At 7 And I Cant Sleep Again. Yuck, It Makes Dealing With This So Much Harder. My Life Sucks, I Cant Study, My Brain Is Fuzzy. I Cant Get Out Cus I Cant Drive With All The Morphine, I Take So Much & The Pain Is Still Intense. Sorry Guys. Just Having A Hard Time Coping. Tomorrow Might Be A Better Day -Fingers Crossed-
Anyway, Im Off. Cant Get Comfortable, Gonna Cuddle Puppy Till I Feel Okay To Have A Shower.
 
Love You All - Thanks For All Your Support, I Know You Guys Understand .
/Love Erin
XOXO
 

Loin Pain Haematuria Syndrome  - A Painful & Rare Kidney Disease .
 
 ^-^
 
When I Met You Boy, My Heart Went Knock Knock;
Now The Butterflys In My Heart Wont Stop Stop;
 
Just Dance' Gonna Be Okay.
 


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 12/2/2009 4:43 AM (GMT -7)   
Sorry to hear your test results didn't come back with the news you were hoping for. Have you tried any other meds for pain control? Maybe between you & your doctor you can come up with something that doesn't make you so drowsy and fuzzy headed.

Stop in here anytime you need to talk, it does help to get things off your chest once in a while. I know my family care and worry about my pain levels but normally I don't vent to much in front of them cause I don't want to seem like a big cry baby. But here it is different cause we can relate and we don't judge whether you are really in pain.
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 12/2/2009 7:56 AM (GMT -7)   
    Baby!....I was wondering how your test went....good to see you back here again, but wish you had gotten the news you wanted. Like Jag said, we hope they can change your meds to something different. Hang in there....and you are right on the money...we do understand!.....Love you Baby!.....I love telling my wife that every night!....thought I could get by saying it here too! :) Best wishes to you!

punchfit
Regular Member


Date Joined Nov 2009
Total Posts : 89
   Posted 12/3/2009 11:18 PM (GMT -7)   
Hi Babycakes,

Sorry to hear your news.
I have been thinking about you and how you are doing , and still trying to respond to your email.
I will get to it this weekend, been so so busy, with all medical appointments & of course xmas preparations etc....
So hectic.

I can understand your frustration and pain & worry.
So many opinions, drs are all individual and have different thoughts on treatment, meds etc... so confusing .
Try and discuss other meds? have you tried other meds?
Your far to young to be suffering in this manner, as you deserve a quality of life and that of a teeneager, as schooling/education socialization friends, getting out and about etc... are so very important

You may need to speak to your dr or see a specialist and try and get additional support for your pain, like me i to am having a terrible time with pain meds. I can related to how your feeling, like everyone else her on HW.

Try and keep your chin up , i know its not that easy and some days are so bad and other days acceptable, but its like there is no stability, and we that all suffer CP, have the ups and downs each and everyday and most suffer from depression because of it.

Please try and keep positive, you have a wonderful family and boyfriend and i must say the cutest little puppy i have ever seen to support you, love you and cheer you up.

Hope you are feeling better soon, and i will email you tonight or tommorow.
Keep smiling Baby, there are better days coming your way i promise.
Thinking of you, your a gem!
Love Leisa xxoo

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 12/3/2009 11:43 PM (GMT -7)   
Hi Erin...

I can relate to a lot that you said.... I hardly sleep either, due to pain and just insomnia. I know what it's like to have crazy exhaustion. It magnifies everything in life, even the little things - when you are so wiped out. I understand. Not sleeping makes coping with anything almost impossible. Add in all of the pain issues on top of that? Like I said, I understand it all too much.

Anyway, Leisa (punchfit) wrote some wonderful thoughts to you... I will just second what she said - I do hope you feel better soon... and know that we are here to listen and support you, ok?

--Tina
Pain Issues: Neck/back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands, arms, feet; I also have POTS/dysautonomia; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Addison's Disease; Central Sleep Apnea; etc etc

Meds: MS Contin (480mg daily); Dilaudid (8mg/3x day); Actiq (1200 mcgs/1x per day); Soma (3x day); Atenolol; Midodrine; Phenergan; Effexor and on the list goes...

Future Plans: Intrathecal Pain Pump; already completed trial; awaiting my decision for implantation


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 12/3/2009 11:59 PM (GMT -7)   
Hi Erin,
I'm also sorry you didn't get the diagnosis you were hoping for. A lot of us here can relate to that really well! It's also awful when you don't follow the so called normal pathway of a disease or respond to meds as you're suppose too. Thats me. I have RA and it keeps getting worse no matter what meds are thrown at it.
 
But I'm not in kidney pain that must be so horrendous for you. What are your options now? Is it treatable with anything besides pain killers?
 
I really hope the meds settle soon. I seem to be used to the pain killers now they no longer make me feel sleepy, just sort of tolerably ok.
 
Have you tried alternative meds for pain?
 
Hope you have a good weekend, golitho

melliflious
Regular Member


Date Joined Dec 2009
Total Posts : 79
   Posted 12/4/2009 8:47 PM (GMT -7)   
Babycakes,

I totally sympathize with trying to be a student and dealing with pain. I've missed the last month of class. What are you studying? I hope you're doing better after your bad day!

Jenna
Pain Issue: Sub-scapular bursitis, scapular dyskinesia, nerve damage down left arm, shoulder and neck
Treatment: PT, Tens Unit, Oxycodone, Diazepan, Hydrocodone-APAP, Tramadol, Voltaren/Duac gel


babycakes-
Regular Member


Date Joined Nov 2009
Total Posts : 94
   Posted 12/5/2009 7:22 PM (GMT -7)   
 
 
Hey My Lovelys !!!
Thanks for all your support - it means the world to me !
 
 
Jag ~ thanks heaps, its nice to know you guys are always here for me. even if you are on the other side of the world; you know exactly what its like dealing with CP.
 
Screaming ~ Haha, your wifes a lucky lady ! no news on changing meds, trying to keep a pain journal but i keep forgetting to write stuff down.
 
Leisa ~ Thanks babe, have just replied to ya email. thinking of you - hows your pain been? set for christmas? also have to say - puppy stuff is cheap at kmart ! i brought bailey a screw in thing for the ground - that i can tye him to for 7$, they sold the same thing for 39$ at the pet shop, and also got him a pet bed for $12, when the petshop ones were between 30 - 60 $
 
Tina ~ Thankyou. im sorry you understand; means you deal with it too. at the moment im so tired, im sitting here typing this while laying in bed, i just want to go back to sleep, but its about to rain and my washings on the line !! dayum, ill try for an early night tonight - yeah right. i can never sleep at night, but during the day when i have to be up and at 'em i feel like i could sleep for days. i dont know, all part of this big crazy pain cycle we all deal with huh. hope your feeling good, ready for xmas?
 
Golitho ~ RA? ruhemitoid athritis? okay - i cant spell that , but i tried. Hmm, now im not sure whats going to happen, im going back to the doctor in the next week or so, shes going to put me on something long acting, and to use sevredol for breakthrough pain.
ill keep you updated though - alt meds, herbal remidies and things yes, accupuncure yes, all dont seem to work. i do take these things full of the stuff thats in cranberries (i cant think of the name right now) to prevent bladder infections, but thats about it, have you tired alternative meds?  how are you ? xx
 
Hi Jenna! Goddam, studying is the worst while in pain isnt it!
im finishing my last year of school ! through correspondence :) so i can do it at home, snuggled in bed. what are you studying? how old are you?  Thanks - im feeling tons better, went bra shopping today and found some cute stuff so im happy. pain is getting sore now, and im so freakin tired. the flats a mess cus i havnt tidied up today, maybe the boyf will do it for me haha. how are you? xx
 
Goh that was a big reply to you all. the thought that you all think of me makes me smile, your truely a bunch of angels.
Love to every single one of you, hope your exicted about christmas. i know i am
Love Erin
XOXO
 

Loin Pain Haematuria Syndrome  - A Painful & Rare Kidney Disease .
 
 ^-^
 
When I Met You Boy, My Heart Went Knock Knock;
Now The Butterflys In My Heart Wont Stop Stop;
 
Just Dance' Gonna Be Okay.
 


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 12/6/2009 1:41 AM (GMT -7)   
Hi Erin!

What kind of puppy do you have? (If you've already said in another post...sorry that I missed it!)... We have a maltipoo that just turned 1 year old. It was last year's Christmas gift for our boys...but I've really claimed her as mine. The only other "female" thing in my house (husband + six sons). LOL

And, if you look at the time stamp, I'm up as usual...dealing w/ the insomnia stuff. I know exactly what you are saying about being able to sleep in the day. It seems like many of us who deal w/ all of this stuff have our nights/days mixed up. Do you take anything to help you sleep? I've been all through the sleep meds - too many side effects w/ most of them.

Anyway, just thought I'd check in w/ ya and say hi....and tell you that I'm glad you joined our little group :)
Talk to you soon,
Tina
Pain Issues: Cervical/Thoracic back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; I also have Dysautonomia/POTS; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Addison's Disease; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; etc etc

Meds: MS Contin (480mg daily); Dilaudid (8mg/3x day); Actiq (1200 mcgs/1x per day); Soma (3x day); Neurontin; Atenolol; Midodrine; Phenergan/Zofran/Reglan; Effexor and on the list goes...

Future Plans: Intrathecal Pain Pump; already completed trial; awaiting my decision for implantation


babycakes-
Regular Member


Date Joined Nov 2009
Total Posts : 94
   Posted 12/6/2009 4:37 AM (GMT -7)   
wow Tina - how do you cope with all the males? goh sometimes having a boyfriend is enough to send me round the bend.
hes a chihuahua crossed with a papillon, total sweetie pie, its 12:33am here and hes snugged up fast asleep next to me.
how old are your sons?

Nope i havnt tried sleeping meds, everything is so crazy, i nearly fell asleep at the clothes line before, but now im laying on the sofa, in my pyjamas i dont feel tired in the slightest .

Thanks - its nice to have unconditional understanding, anything i say here somebody either understands, or feels the same.
Love Erin
XOXO
 

Loin Pain Haematuria Syndrome  - A Painful & Rare Kidney Disease .
 
 ^-^
 
When I Met You Boy, My Heart Went Knock Knock;
Now The Butterflys In My Heart Wont Stop Stop;
 
Just Dance' Gonna Be Okay.
 


Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 12/7/2009 1:07 AM (GMT -7)   
Erin...

I know, living w/ 7 males is interesting, that's for sure! The boys are 14, 13, almost 12, 10, 8, and almost 6...and the "big one" is 42 :)
I got married young and started my family soon after...I'm 36.

Well, my husband just yelled in to me to get to bed! He knows I'll get on here and be up all night before I know it. I'm not on any sleeping meds either....but that's probably going to change here soon. Getting three to four hours of sleep most nights is just not making me a sane person!

I hope you had a good day, Erin! Talk to you more soon.
--Tina
Pain Issues: Cervical/Thoracic back pain; migraines; carpal tunnel syndrome; widespread joint/muscle pain, nerve pain in hands/arms/feet; I also have Dysautonomia/POTS; CFS/Fibromyalgia; Severe Hypertension; Hypothyroidism; Addison's Disease; Mixed (Obstructive/Central) Sleep Apnea - on Auto BiPap; etc etc

Meds: MS Contin (480mg daily); Dilaudid (8mg/3x day); Actiq (1200 mcgs/1x per day); Soma (3x day); Neurontin; Atenolol; Midodrine; Phenergan/Zofran/Reglan; Effexor and on the list goes...

Future Plans: Intrathecal Pain Pump; already completed trial; awaiting my decision for implantation

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