Just sharing

[The Wife]

I was just thinking of you guys. 

I'm okay.  Well, sort of.  My back and sciatica have been causing me a lot of grief.  After a year and half of having my partner on dialysis, I decided it was time to take care of myself.  So....I made a few appointments with my doc.  One for my back, the other for a general check-up - the works.  Thought I may as well catch up on all the things I've been putting aside.

I told her I was your typical caregiver.  Take care of everyone else first and when something gets so bad you're in tears over the pain, it's time to do something.  And while you're there, you may as well make a few more appointments, or you'll just put things aside for another few years.

It seems that caregiving has taken its toll on me.  Not so much the caregiving part but the 'losing' my partners help part, and...okay, the extra work us caregivers do.  He used to carry the groceries and do all the stuff that I shouldn't but without any help, I've had no other choice but to do things myself.  All the things that have made my pain go from what used to be mostly my back and hip to now all the way down to my heel.  Lately it's been so bad I've wanted to take a hacksaw and cut myself off at the waist on the right side. 

This has been wearing me out and I could have done without cooking dinner last night.  A piece of bread with a bit of peanut butter would have worked for me but someone had to cook LL a proper meal since he was having a really rough day again.  After I made dinner, he took two bites, put his plate down, then said, "I'm too nauseous to eat." 

I wish I could write something to bring gentleness to all of your hearts, something to bring joy. Maybe I can just tell you that whenever I feel like I need someone to connect heart to heart with, I think of so many of you. 

There are several pots of purple flowers on my balcony.  I can never seem to remember the names but they are a beautiful sight.  They sway in the wind and under the shining sun.  They bring me comfort, peace, and a smile to my face.  When my grandson comes over, we step outside, and to each flower, he waves and says "hi."  And then he places his hand on the petals, turns his eyes toward me, and in his not quite formed word, speaks the word I love to hear the most.  "Gentle, gentle." 

Ah yes. Gentle, Gentle.

Sending you all a gentle hug and a breath of Love...

[monrein]

So sorry to hear you're in pain.  And that sciatic pain running all the way down the leg is real torture.  You know how much we care about you and I hope you can take it a little easier or get some help so you really can take good care.

[pelagia]

Take care of yourself when you can 

[kitkatz]

You are the third person who I know who has had sciatica in the last week.  It make me suspicious because a whole slew of people are coming down with back problems.  I wonder what new wonder bug is attacking those areas? Or are we just wearing ourselves out quicker?

I have been in both roles lately of care giver and care taker (patient).  Some days I do not know which way to jump around here.  He needs me,I need him.  I carry the groceries into the house now on grocery shopping days.  I often have to stop the check out people and say "bag it light please."  They give me funny looks.  Then he cannot do the driveway up and down. Our drive way is fairly steep. He has almost fallen trying it. Last night I had blood pressure drop while we were out to dinner. All I wanted to do was get home and lie down.  Of course he had to finish his dinner.  I was almost asleep in the booth we were sitting in.  I hate that losing your cool feeling.

[MyssAnne]

TW, I have missed you. And your words of peace and wisdom. Your description of the purple flowers and your grandson was so evocative, I could see him saying that!

Hopefully your doctor is going to be able to help you with your sciatica. Yes, doing more because
your SO cannot do it, will aggravate it.  But what do you do?  It has to be done. 

I'm thinking of you, praying for you, sending more hugs your way.   

[The Wife]

You're all so sweet.  Thank you.

I had a spinal fusion 20 years ago and have managed to cope the best I can with it.  The fusion caused arthritis around the injured area which happens to be by the sciatica nerve.  Apparently, I have a compressed nerve.  Ah, so that's why my leg has felt wooden, but with pain for the past couple of years.  Now it's in my heel.  In the morning, I can't bear weight and sometimes when I'm walking, things lock up, pain - like I've been shot, shooting through, and there I am.  Standing on the street and wondering how I'm going to make it home. 

When LL was bedridden, I asked for help from his doctors.  When we went to see the man at the Ministry in regards to disability, I asked for a bus pass.  The answer has always been no.  So....after two years of increased suffering,  I decided it was time to go to my doctor.  She's a compassionate woman and keeps telling me how impressed she is with me in regards to all I have to deal with.  It's nice to have some kind of ackowlegment.

I've been booked for an MRI to see if there is anything surgical that can be done but my doctor feels it's doubtful.  I've had this for too long.  So...she's given me a referral to the arthritis clinic.  Hopefully, they can help.  In the meantime, I've been given some pretty heavy duty pain killers.  I don't like to take these but the constant and intense pain does wear me out. 

LL's doctor told him he now has neropathy.  Some days he can barely stand, he's also in a lot of pain.  The cramps continue and not just in his legs, and of course, there's the fluctuating blood pressure.  If I were to make a list of all the challenges we deal with, I would probably lay down and never get up.  But there is an energy that moves through me, the energy and love of life. 

There is so much to love - the flowers, my grandson, the leaves that form on the trees.  There are robins that sing the most beautiful melodies, and baby squirrels that follow their mama as they run along the fence. There are the hearts of others who reach out and tell you they care, and strangers that smile as they pass you on the street.  When I step out onto the balcony and say hello to the flowers each morning, I am greeted with gentle waves from the petals that reach for the light. 

We also need to reach for the light.  Reaching into our own hearts, into our breath, the essence of life reaches back to us with a warm embrace.  With this embrace, we reach out to others, and through this, we are lifted out of darkened pain where a gentleness caresses us, and brings us into a remembrance of the true essence of our beings.

Inhale a breath and feel the essence of your being.  Feel the love that you are.  As we breathe together, another flower expands its petals to inhale the light of this day.

I hold all of you in my heart and send you a warm embrace.

[okarol]

 

[annabanana]

There is so much to love, TW. Beautiful words from a beautiful person.

I'm sorry you are in so much pain. I have sciatica problems, too, and go to a massage therapist who taught me some exercises that help. It hurts to do the exercises, but it really helps afterwards.

[paris]

I am sorry for all the pain you are in.  I was glad to see your post.   When you are gone for awhile, I worry.   Sending you caring thoughts and love.

[The Wife]

Don't worry about me if I don't show up.  If LL ends up in the hospital or something, I promise to let you guys know. 

The pain has been really bad, so bad, I just couldn't focus on anything.  Fortunately, I finally got smart and went to see my doctor.  The medication is helping and I AM taking it easier.  I'm also doing yoga at home and looking forward to having some one on one time at the arthritis clinic.  From what I understand, they go through exercises with you.  Oh, how I could use some pampering. 

Myss Anne, I didn't respond to your post but I wanted to let you know I'm thinking of you and glad you're out of the hospital.  I was sad to hear you had to stop PD. Oh yeah, I forgot to tell you:  I gave my grandson a hug from you and he gave me three back!  One for you, one for me, and an extra one for good luck.

Annabanana - how are you?  I worry about you too.  How's Randy's emotions these days?

Odat...I think of you and your mom and hope you are getting through this okay.

Has anyone heard from Joannie?  The loss of Chuck and what she must be going through really touched me at a deep level.  If you're reading this Joannie, please know my heart is with you.

And to all the names I didn't mention:

 

ps.  is it possible to get a heart icon?



 

[annabanana]

TW, being a caregiver is tough when the receiver is pushing me away from that role. Randy is still drinking a lot. He still works but his drinking is really starting to get to him. I worry.

It's hard to love someone so much that you can't help but be a caregiver...even if they don't want it. You see the great need, even if they deny it. He asked me to step back and watch, and I tried that for a while, but no, I can't do that anymore. The thing that helped me most was my anger at the situation. I just got mad as hell and told him that I choose LIFE!
whether he chooses it or not. Maybe I'll set an example and he'll start trying again. But I won't give up anymore.

I just wake up every morning and put my armor on. 

  Love and hugs to you.

[The Wife]

I'm really sorry to hear this Anna.  We all know Randy shouldn't be drinking, especially with Hep C, but what can you do?  All you can do is take care of yourself, tell Randy how you feel, and hope he finds it within himself to do what he has to do to live. 

I send you both a big hug.   

[annabanana]

Thank you, TW.
So often, like others here, I come back to this thread and read your words and am so comforted.
You have a beautiful gift. Thank you for sharing it .

[MyssAnne]

TW, Thank you for the hug from your grandson, I cherish it!  As for my battle, it's bearable. I can get through this.  I may not like it, but I can do it. Thanks to you, and all our friends here, who encourage me, and cheer me on in my battle. I can only hope to do the same for you and everyone else here who needs it. 

As Anna says, your words offer us comfort. You are needed here!! 

 

[The Wife]

Ah MyssAnne, thank you.


We are like the flowers growing in the garden and in pots on balconies and window sills.  Like the flowers, we reach our petals outward and dance under another day of sun.

There are days when strong winds blow and days when more rain than we need, comes.  There are also days when water is sparse.  Extending our branches, we share the moisture held within our leaves so that others will not wilt. 

Standing in the garden of life, we expand our petals to touch the essence of all around.  To touch and encourage others during their season under the sun.

As we sway together in this beautiful garden, we listen to the songs of the robins.  We watch the butterflies and ladybugs fly above us, and allow the wind to lead us into harmony with their song.

Our harmonies call the butterflies toward us, and as they sit ever so gently on the center of our being, we inhale the beauty of this moment.

[MyssAnne]

All I can say is, how beautiful, and how soothing those words are.  Thank you TW.   

[paris]

Your words just wash over me.  Thank you for sharing your thoughts. 

[The Wife]

Thanks Paris.

Unfortunately, I won't be able to return to this site.  My darling spouse reacted to being labeled over an opinion he expressed and was quickly banned.  Since we use the same computer, it's only a matter of time before neither one of will be able to sign on.  I'm actually suprised I could log on but glad I could so that I could say goodbye.

Love to all of you.

 

[annabanana]

TW, I hate to see you go. I hope it's not true. You've helped me so much, and others, too, I know.

[breezysummerday]

33 days and counting

 

[monrein]

Hope you guys are both well.  I miss both of your posts LL and TW.

[The Wife]

It's almost three in the morning and I'm sitting here wondering what just happened. When I went to bed, I started laughing, thinking about Wayne and I both telling the nurses we both wanted Dr. House. Telling them we needed to be home by eight. Wayne telling me to make sure to go home, to make sure I taped the show. Asking what the nurses thought about House.

And then I remember seeing the heart monitor, hearing the constant beat from the alarm that tells them his heart rate was too low. The oxygen tube. The beeping reminding me of his dialysis machine.

All of a sudden I rememberd that Wayne needed to be hooked up. All of a sudden it became a concern. "Did you bring his supplies?" one doctor asked.

I was supposed to bring his machine, the bags of fluids, and all the other stuff that goes with it to the hospital? Go home, bring it back by bus?

Not to worry. They would call the renal unit and get them to get the supplies from the home dialysis unit. They promised they'd hook him up.

I think I'm writing in my sleep. I'm tired, yet awake, calm, but with a headache.

How is it that I'm not feeling afraid at all? I know this is serious. I'm trying to wrap my brain around this. I think it stopped taking information in when they said 'pacemaker.'

We didn't start by going to emergency. We went to the home dialysis clinic which is at the end of the renal ward. His doc wanted an EKG done, told us to go to the clinic, they'd bring the machine to him. I thought they'd just change a few meds, possibly stick him in the renal ward for the night to keep an eye on him. You know, make sure he's okay before sending him home.

We went to ER through the back way. No screaming ambulance, no waiting for hours in the waiting room, no preparation at all.

I told Wayne we were both too calm, that this was a sign that we've been there too many times. Like standing in line at the grocery store, or going in for more blood tests.

Walking down the hall to grab a cup of tea brought many memories back of times when I was terrified, times when I joked around when I should have cried. Times when I didn't know what was going on. And times when I wondered if he was going to live or die.

Like yesterday. And right now. I'm still not quite sure if they said he definately needed a pacemaker, or if they could flush the medications out, something to get his heart back in order. I don't know. I'm just trying to remember exactly everything that was said.

I don't know where Wayne is right now. They said they would send him upstairs. That's not the renal unit. I know that area. I know which way to go for coffee, to phone someone, the way to the garden.

I want to go to the kitchen, look over at the bed in the dining room, check the machine, listen to his breath.

My head is still spinning. My heart is calm.

Thank you for surrounding us with love.

[willieandwinnie]

  We are all right there with you.

[monrein]

    Thinking of you today TW.  Best wishes to LL when you see him.

[Bajanne]

So happy to see you with us. My caring thoughts and prayers are with you all the way.