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LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 3/25/2009 11:11 AM (GMT -7)   
I have been searching for a site to become an active member on.
 
I'm 39 yrs old with multipule issues.  These have all showed their ugly faces in the last 5 years.
 
PKD (Polycystic Kidney Disease)
Chronic Kidney Stones
Chronic Kidney Failure
Kidney Disease
CHF
Severe Genetic Hypertension
 
I have no one to talk to.  My husband but most the time I don't want him to worry.  I grin and bare it most the time.  My family, friends and coworkers are not in the loop on my health issues.  I feel uncomfortable speaking with them.  I know I will get alot of I'm sorry and Oh my gods...  I don't want that.  To me chronic pain is something I will have to live with I need to find solutions or treatments to make things more comfortable also a place in my mind of acceptance.  I guess I just have issues with being looked at as anything but whole.  If that makes any sense.  I don't want people at work to think I can't do my job.  I don't want family members to have to worry because I'm the one everyone comes to and my friends well just say I'm limited on that department I'm to busy with family and work, plus I think I just suck at friendship.
 
I'm alittle lost right now.  I worry about not being able to meet my grandkids in the future.  My mother died at 50 which tore our family apart.  My medical future looks bleak right now.  I depend on pain medications I have worries about that. I know its starting to get overwhelming.  I am feeling the pressure.
 
I'm hoping to sit down and read the posts in this forum and gain knowledge if not a sense of well being or a place to come to on my good and bad days.  I'm a very giving person been accused of taking care of everyone else but myself.
 
I guess thats my introduction of myself. 
 
I hope to find a home here.
 
Thank You
Laurie

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 3/25/2009 11:39 AM (GMT -7)   
You are able to grin and bare it.

I'm sorry you have issues with not being seen as whole.

You're considerate of people. You don't want them to think you can't do
your job. You are the one people come to in their time of need.

You are able to go to work.You are a very giving person been accused of
taking care of everyone but yourself.

You may be a candidate for saint hood.

You worry about dying. You worry about not meeting your grandchildren.
You worry about pain medications. smhair

Hmmm... Read on. You may find out even more about chronic pain.

Pamela

Post Edited (Pamela Neckpain) : 3/25/2009 12:45:04 PM (GMT-6)


Danimal
Regular Member


Date Joined Mar 2009
Total Posts : 80
   Posted 3/25/2009 11:49 AM (GMT -7)   
Hi Laurie:

First of all, welcome to the board.

Second, I am sending you a big virtual hug. I feel for you. I know what it's like to suffer with such bad pain but to try your best to grin and bear it. It's difficult to truly convey to others just how much you are hurting and just how awful it really is. I also know how hard it is to be young and in pain (I am 29...have had chronic pain since I was 16).

I know you said that you don't really share with your husband because you don't want him to worry...but part of the marriage vows he took were to support you and care for you through good times and bad, in sickness and in health (and if you didn't say those exact words, I'm sure your vows had something to that effect included in them?). That means both physically and emotionally.

When you have shared things with him in the past...has he been supportive??

My next question..are you followed by a good pain management doctor?

Please know that you aren't alone. Everyone here understands what you are going through...even if our specific issues might be caused by different things. Chronic pain is chronic pain. :(

Best,
Danimal

Come visit my blog..Chronic Stimulation (a diary about living with a newly implanted stimulator)
http://www.chronicstimulation.blogspot.com/

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 3/25/2009 12:00 PM (GMT -7)   
Laurie
Wecome you have definitely come to the right place, sorry you are having pain issues but coming here you are not alone! We all  understand how you feel, allot of us with Chronic Pain do tend to isolate our selves from others. And most if not all of us are also taking pain medications to help us to just be able to function.
 
You said(" My medical future looks bleak right now.  I depend on pain medications I have worries about that.") Not to be prying but  could you explain what you mean by you having a bleak medical future? I can see you have some pretty serious problems going on with your kidneys. I can definitely understand your concern, but as bleak as things might look sometimes, there is always hope.    And what kind of concerns do you have about your pain medications?  Sometime with CP we can feel over whelmed  by it all and by your own admission you said you are used to being the care giver. But all to often the care giver fails to look after themselves, you know you can't always be the one to give the care, sometime you might also need to receive it. From the sounds of your post it definitely sound like you need to be on the receiving end for a while. You need to have some one help take care of you! I do hope you can gain at least a  little knoledge and sense or feeling of comfort from knowing that you are not alone, and there are lots of folks here that concerned  do care about you!
 
Again Welcome I wish you only the best
 
White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 3/25/2009 12:21 PM (GMT -7)   
Thanks all of you for such a fast response.  It brought tears to my eyes.
 
To answer a few of the questions
 
My husband is the most supportive, loving and caring man.  He knows mornings are really bad for me.  He will set the alarm at 3 am to get me my pain medication and water.  I just don't want him to worry.
 
I have 2 referals to a PM clinic.  Its been two weeks with no call with an appointment.  I see my PCP every 10 days for a refill on Lortab 10's.  I take three a day.  Just to get me through until I see a PM.  I'm afraid to state it isn't enough maybe codiene isn't the one for me.
 
I was raised with a mother who was an RN.  She took care of everyone and neglected herself and died at 50 with a condition they could of prolonged.  I know what your thinking why do a repeat?  I just can't help it.  Since she died now everyone comes to me for answers and support.  When she died I helped everyone else with there grief including my three children that loved their grandmother dearly.  After 6 months of being strong I fell apart.
 
I'm just going to have to learn to be on the receiving end.  Its not part of my nature.
 
Bleak for me is I have no control over the progression of the diseases.  I can only take it step by step.  I will lose the kidneys don't know when but it will happen.  All my issues are labeled progressive and will get worse over time.  The PKD will cause the pain to get worse every year.  I have felt this over the last 5 years.  Went from pain medications a few times a year to daily now.
 
I have so many doctors they all disagree with my medications and restrictions.  Cardiologist wants restricted water intake, Urologist is fighting that one.  I deal with mixed messages from doctors monthly.  I take 19 different meds a day.  I have tried to remove some of them but each one is needed.
 
I think I am just starting to feel the weight of all the stress, pain doesn't make it any easier.  Sometimes I feel the pain is in the forefront, if I'm in pain I can't seem to get all the details worked out with where to go from here.  Some might call it depression.  I take meds for anxiety, to help maintain the blood pressure its also stress induced.

Jules22871
Regular Member


Date Joined Jan 2006
Total Posts : 142
   Posted 3/25/2009 1:57 PM (GMT -7)   
One thing I have learned over the last few years is that I am not 6 feet tall and bullet proof. It took me a long time to be able to admit that I need help doing even the simplest of things. It sounds like you might be like that too. It is hard to be seen as the lady that is on crutches, or the lady that the benefit was held for. We live in a small town in Tennessee and I get that all the time. It is hard to let go of who I used to be and who I have become. I think I am still having problems with that one.

I'm really glad you found this place. I have been here for quite some time, just never did post much but I am learning a lot from everyone and I sure do feel the love that caring that goes on here. I know you will find the same! I wish you the best and I hope you stick around!

Jules
Motorcycle wreck 08/2004: 119 fx, 13 surgeries with more to go, including 5 bone grafts, 2 skin grafts, pelvic reconstruction x2. Right leg is 1.5" shorter than left. Have to wear knee brace for life and also AFO brace for drop foot. Nerve damage from hip down to toes, nerve pain in lower leg. Spinal fusion. Will be on crutches the rest of my life. Pain level never below 5 even on pain meds. Since August 2007 I have been diagnosed with chronic atelactesis, tachycardia, high blood pressure, borderline personality disorder, depression and Delayed sleep phase syndrome


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 3/25/2009 2:24 PM (GMT -7)   
Stillrecovering
 
I'm also from Tennessee.
 
I am finding it difficult to let go and accept I need support.
 
To Pamela Neckpain
You may be a candidate for saint hood.
 
I am far from Saint Hood...LOL  I just care about people and their well being. 
 
So far I've spent the day going through the posts.  I'm finding alot of loving support.  I hope to spend much more time here on my days off.  The first day off I have I'm usually suffering.
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 3/25/2009 3:27 PM (GMT -7)   
LLPLUV you know that your mother is like a majority of nurses, there is something in them that makes them that way. They will take care of others and not them selves, do as I say not as I do type of thing. That is just the way it is, I am sorry that she passed away at such a young age, you must also have the "nursing gene" in you, if so, it will do no good to try and tell you to stop caring for others! But just the same if you do want to continue to take care of others whether it be in your family or your friends, you must start taking better care of yourself! It is hard to let go and accept the fact that you need support. But it is something that you do need to do.

You know LLPLUV there is no shame in having to take pain meds, you didn't ask to have all those problems, pain meds are like any other type of medication, you take meds to control high Blood pressure, you take meds to control diabetes, and you take meds to control pain. Nothing more and nothing less! It is just a medication to keep a medical condition under control!
Be good to your self!

White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/25/2009 4:27 PM (GMT -7)   
LLPLUV,
I wanted to also add my welcome to you, along with others. I wanted to take the time to read through the thread before I did.

You know, I think a lot of us have trouble letting go of taking care of others, and giving ourself some attention. There's a tendency to feel like we're being "selfish", but I think there's a healthy type of selfishness. And that we don't have to give up taking care of others, just find a better balance.

Lots of good thoughts have already been shared in the responses. I'm not sure how much I can add that's helpful right now. I just felt your self of feeling overwhelmed with it all, and that sure is something I can relate to. Sometimes I want to pitch all the pill bottles and just see what happens, but it would be dangeorus to do that. Yet if feels like you're the tennis ball your doctos are batting around - all trying to help you, but not realizing all these competing expectations - drink water, don't drink water ....I mean that's a big one! Hard enough to keep track of 19 medications!

So I'm glad you joined us and want to send hugs and support. And I noticed you've already added to other posts. That's what makes this site so great.

PaLady

Post Edited (PAlady) : 3/25/2009 5:30:08 PM (GMT-6)


bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 3/25/2009 4:37 PM (GMT -7)   

LLPLUV:

You have someone to talk to now, and we can understand what you are going through like no other!

I am sorry for your situation.  Having someone to share how your feeling with as well as your thoughts and concerns is so important and you have come to the right place for that kind of support. 

 


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 3/25/2009 8:31 PM (GMT -7)   
Hi LLPLUV,

I'm having a really bad night both with my eye sight & my pain, and I am utterly exhausted (and being a college student, still have more work to do before the night is out), so I'll keep this brief. I also want to welcome you to the CP board of HW. I'm sorry for all the things that you are going through; your kidney problems really sound quite horrible! But, you really have found a great place to come for support & friendship. Many of us feel like we are a burden to our loved ones because of our pain & medical issues (I certainly do), and that makes this site even more precious. While everyone here has different problems, we all have pain, and therefore no matter our type of pain, we can all understand what the other is going through! That understanding is hard, if not impossible to come by from most people in our lives! So welcome to our small CP family. We're quite happy to have you & we encourage you to keep posting with us!

Skeye
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