Hanging on by a thread

[kitkatz]

I am hanging on by a thread right now.
Dialysis sucks. My blood pressure has decided to be stupid while I am in the clinic.
It is high in clinic. After my treatment is finished it is high when I am standing.
I am hating having my blood pressure taken. It hurts like hell.
I was crying last dialysis after treatment. The nurse wanted to know why, when I am crying I cannot make sense.
Everything is making me crazy now.
The dialysis clinic doc gave me Ambien to help me sleep and be calm. Took it first time the other night. Nurse blames the Ambien.
No, I leave the D clinic lately very close to tears.
I do not feel good.  All i can do is get out of bed, get on my computer, and then take a nap.
My days and nights are mixed up. I am not sleeping well at night.
I am waking up with a killer headache every morning after D.
I have no reserves left.
I had fistula surgery a few weeks ago.  My arm hurt for three days and surgeon gave me nothing but Tylenol. I was in tears for three days.
In January I fell across the dialysis clinic floor and wanged the heck out of my left knee and leg. Luckily nothing was broken, so still healing from that fall.

I feel like I cannot take anymore.  I am not a quitter, but enough is enough already.

[kristina]

Dear kitkatz, I am so sorry what you go through...
... and I am wondering whether your symptoms could be created and exacerbated
by the artificial ultraviolet lighting in your dialysis-centre ?
... The symptoms you describe sound to me like "typical" symptoms of photosensitivity,
expecially the BP-fluctuation, your terrible headaches, depleted reserves etc..
Please try and use during your next dialysis-session one of the isolation rooms and turn the artificial light off.
Could it be that the ultraviolet artificial light in your centre has accumulated over time and gives you now these terrible symptoms ?
I am thinking of you and keep my fingers crossed!
All the best wishes from Kristina.

[monrein]

KK, this post has left me feeling very sad and I wish there were something I could do besides sending you a hug and my hope that things feel better soon. You are the definition of a dialysis warrior and you deserve to feel better than this. xxxooo

[Deanne]

This makes me cry. 

[SooMK]

I am so sorry. That you are so desperately ill and yet supposedly under medical care is just wrong. My Mom had that same hopelessness during her dark dialysis days. Wishing you some light, sending you positive thoughts.

[Michael Murphy]

Please get better, I intend to do a good deed and will try to send the good karma to you.  You are too important to too many people,  so like tinker bell we should send good thoughts and deeds your way to help.

[jeannea]

Kitkatz, I am so sorry you are suffering. I wish I had a way to cure you. We are here to support you. When you are hurting, close your eyes and try to feel us all holding you up. 

[MooseMom]

This site is called "I Hate Dialysis" for all of the reasons you've outlined in your post.

It is all so unfair, and I am very angry on your behalf.  I am upset that you are suffering in this way.

Feeling like enough is enough does not make you a quitter.  It makes you human.

[jcanavera]

I'm so sorry to hear this.  I know when my wife first started at the clinic, after the first week I remember her asking the head nurse as to what happens if she decides to stop dialysis.  That probably was her lowest point and it truly scared me.  The nurse was very empathetic in talking with her.  I also talked to her primary care doc and her nephrologist about her mental state.  They offered her medication to help deal with the depression, but she decided to press on.  We had decided early to go to PD so we knew that the hemo side was really a temporary state. 

I think the clinic setting for some is not a great environment and the nature of that kind of facility and small staff, no one really can get the kind of care that mentally they sometimes need since the staff seems to be on auto pilot.  I really think that when dialysis patients get to your state, there should be a special group of people who can give you the attention and care you need.  Maybe it's time to talk with the social worker at your site and see what alternatives for treatment, or even dialysis facility are available to you.  Getting out of the hemo clinic where I could do her PD made a big difference.  We also found her primary care doctor (who is really caring) offered her a lot of support.  We see him quarterly and he never fails to talk to her about her mental state and how she is dealing with PD.

My best to you.  Keep up the hope and fight.  There can be better times ahead.

Jack

[BobN]

Thinking of you kk.

[Charlie B53]

Wise words from Jack.

I really gets my BP up to learn you have been left in pain.  We have plenty enough stress in our lives on D and for the Dr's to leave anyonoe in pain from obvious injury is totally uncalled for, way out of line.

Sleep aids, there may be a dozen meds, each works fine, for some people.  Some have problems.  You HAVE TO let your Dr know how the med works for you.  Good, bad, or indifferent.  It may need adjusting, or a different med altogether.

Never give up hope and let them grind you down.  Like the rest of us, you have to make you problem known to staff.  If they do not seem to listen then find the patient advocate who WILL listen to you and then take the problems to someone of authority to find answers that you need.

Hang in there and try to stay strong.  We are all here pulling for you.

I'm hoping to see an updated post in the near future, telling of good progress and that you are beginning to feel a lot better.

Take Care,

Charlie B

[willowtreewren]

Oh, dear, KK.

Reading this just makes me feel sad and helpless. I am so wishing I could do something. Anything. It isn't fair. I wish I could carry some of your burden.

Sending lots of love.

Aleta

[PrimeTimer]

Hope better days are ahead for you, kitkatz. Sometimes when I am really down and struggling, I just want to yell at everybody and tell them that I am tired of having to be strong and for a change, want to be weak. I know I haven't been on here very long but it didn't take much time to see that you have a lot of friends who care about you and seem to want to shoulder some of the pain for you. That is company worth keeping. 

When I want to be the weak one, I think of these particular lyrics from the Superman song by Five For Fighting, kind of describes what I want to say to people.
"Even heroes have the right to bleed"
"Even heroes have the right to dream"
"It's not easy to be me"

[willowtreewren]

KK, I was thinking about when the Lyme disease really had me on my knees. I learned to drop the f-bomb with a vengeance. I found I could string 6-10 bombs into one sentence and just keep it going, just letting out the frustration. Maybe that would help you a bit.

It went something like this:

I'm so f'ing tired of this f'ing disease that keeps me so f'ing tired in in so much f'ing pain that I can' f'ing enjoy any f'ing life.

As strong as you are, I know you must have hit a pretty bad low to share it here. I'm just grasping at ways to help.

 

Sending hugs.

Aleta

[jeannea]

Aleta, you are right. Actual studies have shown that swearing can help with pain.

Kitkatz, if you're tired of regular swear words, google some in other languages and use the ones you like to say.

[talker]

Take a peek at:

http://ihatedialysis.com/forum/index.php?topic=31031.msg480134#msg480134

[Charlie B53]

I'm generally pretty careful about using language.  Little ears pick it up way too fast.

But there are times when the immortal words of George Carlin, may he Rest Eternally, come to mind.   Those seven words you can never say on television.  Most of them are regularly used on TV now, but back then......... they couldn't even hint at them or the Censors would lean on the bleep button.   TV and movies used to be clean.

[okarol]

  I wish I had an answer to this.
It's so frustrating and breaks my heart that you're struggling so.
You have really fought through many years of challenges and I selfishly hope you keep fighting.
Love you KK - please call if I can help. 

[kitkatz]

Thank you my dialysis family on IHD.com  I still hanging in there.  Took 2 ambien last night and actually relaxed enough to sleep for a few hours at least.
Woke up with the usual headache.  Took my BP piils and promptly found myself falling asleep over my computer. So off to bed I went again and slept for two hours more.  Feeling better today.
Sadness yesterday, we had to put my beloved dog to sleep due to liver and kidney disease. She was hurting all over and it came on fast.  Her blood work at last check up in October was great.
I am lonely without her. She was my dog in every way.  She changed allegiances eighteen months ago because I was in the hospital for so long.  She would hang ut with him but come in to me for attention.
Dialysis was all right last night but my mood was sad. 
Things have got to get better.

[Angiepkd]

Praying you get some relief and feel better.  I think anyone on D can relate to that hopeless feeling now and again, and pain combined with sleep deprivation only make things worse.  I still struggle with sleep after tx, and all of the recent medical issues have gotten me down.  Please try to hang in there, as it usually gets better.  The loss of your dog is heart breaking, too, at a time when you could really use some doggie love.  I lost my sweet Miley dog a few months ago and I still miss her every day.  It seems like when it rains, it pours.  Hope you feel better soon and can put all of this behind you! 

[Charlie B53]

Losing a beloved pet is almost like losing a Child.  We lost Herbie, the Love Bug, the one-eyed Beagle earlier this year.  He lost the eye when his previous owner took a hammer to his skull at 3 months.  Because he whined all night staked our in their back yard.  Herbie loved us for ten years then just lalid down one day and slipped into a coma, never to awaken.  Vet told us it was kidney failure brought on by diabetes.  We never had a clue.  I still feel so bad that I failed him.  If I would have had him tested regular we should have know and I would have given insulin same as I do myself.  It really hurts more when it is our fault.

When the time is right we will adopt again.  But not yet, I've still a lot of grieving to do, and have to learn to forgive myself first.  That's the hardest part.  I am really tough on myself, I should know better.

[Rerun]

I'm sorry about your furbaby!   

You hang in there!    

[jeannea]

Losing your pet can be so hard. I am sorry.

It sounds like you really need a 12 hour sleep. Not sleeping is a torture technique and can drive you crazy. I was recently in the hospital and went almost 3 days with only 15 min catnaps because of stomach virus symptoms. Nothing they gave me helped. I was so completely exhausted and just begging them to knock me out. You must be experiencing that to the umpteenth power. I wish you sleep.

[Relentless]

I'm 36 and been on dialysis 4 year without a single call for transplant. I was in hospital for 5 days for pneumonia and I know what no sleep feels like. I was waking up every hour due to not being able to sleep. I wanted to die literally. It's been 2 weeks out and I still can't get more then 2 hours asleep so feel exhausted and miserable. Doctor wanted to give everyone me ambience but I told him no. I already take over 10 pills a day from blood pressure to acid reflux to now antibiotics for pneumonia and that's not including 12 binders I take. I feel u 100%.  All I can tell you is that it will pass your pain your going through. It's the only thing that's getting me by. I hope it makes you feel better to know that I'm going through the same thing your going through.

[willowtreewren]

KK,

Sending love, love, love. I know hhow much it hurts to lose a fur-child. That on top of everything else. You are a warrior, though.

More hugs.

 

Aleta