Friday, September 12, 2014

Women & Pain. No Not Pain in the Butt Women!

I am a woman in pain.  For my Sweet Hubby (SW) I am certain I can also be a huge "pain in the butt".  For now however I am only addressing chronic pain.  For those who are in mainstream normality what is your first thought when you hear the words "fibromyalgia, chronic fatique syndrome, back pain"?  Do you believe they are valid complaints? Do you believe they have consistent real pain?  Do you think these words really relate to phantom or "in the head" pain?

I am here to tell you chronic back pain, fibromyalgia and chronic fatique syndrome (although I only have chronic back pain) are REAL.  I have however come upon health practitioners who downplay and thus under treat those with the above and many more health complaints "merely" because they come from women.  Discrimination? You bet.  Read on my friends.


Would You? Could You?

Would You? Could You? Dare You?

As a small challenge, I would ask of you to think about the feasibility of sitting in a recliner for 8 hours at a time.  You cannot stand up or get out of the chair.  You must keep your dominant arm straight and not move it at all.  You will need to exercise self control if needing the bathroom.  You will need to only snack while in the chair.  For 8 hours?  No? Okay, how about 4 hours? Better.  Will you be able to read a book one-handed (you cannot move your dominant arm)?  Will you be able to get on your laptop? Watch movies one armed? Watch TV? 

Think about this for a small moment.

Now try to fit this into your work schedule? Picking up kids from school and getting them to their karate lessons? Every other day.  If you don't go, you risk death.  You must schedule everything else around these three days per week.  Every week.  Regardless of holidays, birthdays etc. 

Think you could do it for one day?

How about 3 days a week, FOREVER? 

Sound like fun?

More than 400,000 people in America can do this.  Is it fun? NO! Do they do it anyway? Yes!

Would You? Could You sign YOUR organ donor card?  

Would You? Could You consider being a living donor? Would you consider giving away one of your kidneys, part of your liver, bone marrow to give life to another?

Think about it.  Do it!


Tuesday, September 9, 2014

"First, Do No Harm"

Do you know in the dialysis industry any patient can receive what is called an "involuntary discharge"?  Do you know what an involuntary discharge involves?  Basically it is when a dialysis clinic and/or doctor refuses to treat a patient.  A patient is basically "fired" from ever being treated in a specific dialysis facility and/or doctor ever again.  Do you understand what this means?  It means finding another doctor and/or dialysis facility somewhere close to where you live and getting all your records, insurance and transportation transferred over.  Currently there are approximately 400,000 dialysis patients in the U.S., yet in 2011 more than 440 dialysis patients received an ID.  Read this amazing and eye opening blog by Beth Whitten an social worker in Missouri who run the Missouri Kidney Program's educational services.  Thank you & Blessings, Amy

Sunday, September 7, 2014

Be safe. You aren't alone.

Insomnia again last night.  My eyes wouldn't let me rest until the new day began to break.  Still, I was thankful for the time I had.  I was sluggish and foggy headed all morning.  I came upon this.  It gave me the lilt I needed.  Be safe my friends.  You aren't alone.


Are You Beauty.....Or Are You The Beast?

I am a beauty.  I am a beast.  Dialysis can do that to you.  Dialysis is tough.  It is not for the faint of heart.  We are warriors in many ways.

"I have to use the BATHROOM.  NOW!!  For the love of God and all that is holy P U L E E Z, let m off so I can use the bathroom!"  I can still remember the man's screams.  He has been on dialysis for about 3 hours.  I am doing a treatment in-center this time.  He sits across the room.  He is angry.  He is lashing out at the nurses, the patient care technicians, the other patients.  He is angry at having to sit in the chair for 4 hours every Monday, Wednesday and Friday.  He is angry that he cannot move his arm or the 2 needles that are pulling blood out of him and pushing it back into him will become dislodged in some way spewing arterial blood everywhere.  Its happened before.  It is not pretty.  His back aches, he is hungry yet cannot eat or drink anything while there.  He is chastised by a nurse for having a cough drop in his mouth and told to spit it out.  He is bored as he cannot read (can't hold the books), cannot use his laptop or phone -- "not allowed" they say.  When he needs to use the bathroom he has to wait for someone to come and temporarily disconnect him from the machine.  They don't like to do it, so they delay in hopes they can make him wait until the end of his treatment.  He is cold.  He wears sweats, knit cap, gloves and a blanket.  He is still cold.  His wife is not allowed to visit or even sit next to him while he does his treatment.  He tries to sleep, but cannot.  There are 24 patients in this big room right along with him.  Alarms all around sound off, like a chorus of machines searching for help.  The nurses work at the computer, work at the supply station.  They chat with one another.  They ignore the machines.  Most of the patients sleep.  They all huddle beneath blankets and mittens and hats.  Some listen to music or TV by headphones.  They are all quiet until this man's screams break through the lull.

He is angry because his muscles are cramping.  He is angry at losing his job, his home, his friends, his economic status and a decent life.  He hates the world and everything in it.  He cannot escape this place.  It is part of his life day in and day out.  Day after day.  Week after week.  Month after month.  If lucky enough, year after year.

For the rest of his life.

He acts like a beast.  He snaps with snide remarks.  He is rude.  He is hateful.  He is mean, arrogant and testy.  He swears now and then but is sure to belittle the nurses that try to care for him.  He is a beast.

By the time he slowly walks to his car after his treatment he notes he left home 5 1/2 hours earlier.  Another 20 minutes to get home and the day is virtually gone.  Home.  Snack. Bed. Sleep.  Ah, blissful sleep.  He chooses an apple with a teaspoon of peanut butter.  Can't have bananas.  Can't have yogurt.  Can't have nuts or crackers.  Can't have more than a few ounces to drink so he chooses some ice water.  None of it tastes good.  He eats anyway knowing he must.  He crawls on to his bed and sleep devours him.  The beast.  The beastly beast.

By morning he feels like a new person.  He has a piece of toast and a hard boiled egg for breakfast.  Can't have bacon, or cereal, or pancakes or biscuits and gravy.  "Not allowed" they say.  But he feels so much better.  He mows the lawn.  He sits on the deck and soaks in the sun while he reads a book.  He checks his email.  He envelops his wife with a tender hug and a sweet kiss.  He tells her kind things and helps her around the house.  He sings to the music blasting the air.  He watches his kids play in the small pool.  He jumps in splashing them with water..  He tells jokes. He checks the oil and fluids in the cars and tinkers around in the garage.  He feels thankful.  He feels hopeful.  He feels content, happy.  He feels beautiful.  He feels like a beauty.

While he watches the sun set, a small droop in his face appears.  Tomorrow is another dialysis day. He feels anxious, nervous.  He does not want to go.  It has been a good day today.  A happy day.

Many of us are both Beauty and the Beast.  Can you love us all the same?


Friday, September 5, 2014

Let it go

I was reading through some posts on a facebook group called "I Hate Dialysis".  I know it sounds really negative but its a great place to go to when I am feeling a little low.  I know I can rely on friends there to let me vent, to allow me to educate, to learn from others' experiences.  Sometimes (well many times) we fall into that trap of taking things personal.  Then others respond and it ends up being this massive snowball that just grows and grows all out of proportion that doesn't represent anything from the original post.  It becomes all demented and insignificant.  Someone posted this picture from a Disney movie called Frozen.  I had to laugh because in so many ways the picture, the words added "Let it go!" and the name of the movie all represent how I as a dialysis patient feel.  I feel as if my life is frozen in time.  You know? Like I am doing the same thing over and over and there is nothing remarkable to show I am moving forward.  Do you ever feel as though you are frozen in time? Do you feel like you have no value or worth because you are not accomplishing something?  I often have felt as though my value is nothing.  I don't work.  My children are raised and on their own.  I am reliant on this machine to keep me alive every day.  Every single day.  Please think about that for just one moment.  Every single day.  Then I realize just as these words proclaim.  I need to "Let it Go".  My worth, my value is not dependent upon my accomplishments.  I have value just because I am a living breathing being.  So do you.  Remember that.  So do you.  So for today, just "let it go".  Remember you are valued.  You are loved.  You are important.  If you need someone to talk to, send me an email.  Many Blessings,


Thursday, September 4, 2014

Here are some tips on great kidney healthy foods. Enjoy

Kidney Healthy Foods.


Just Smile :-) Damnit!

Was up by 6am and out the door shortly after.  I have to say outright I am absolutely terrified of going to the dentist.  I have struggled with finding a good dentist and one I could afford without insurance.  I was able to go through "Donated Dental Services".  The first dentist I saw was short, curt and less than understanding.  I requested referral to someone else.  He is a person.  He treats me as a person.  His staff treats me with such respect and concern that I have to do a double take when they talk to me as an equal.  Today I had half my teeth deep cleaned.  This required injections, but they were so nice and took their time to limit the pain.  The technician talked about her pregnancy.  She is just so kind and talks enough to keep me occupied but not too much to be annoying.  I took great joy in her joy of this precious child she is growing.  I remember the joy I felt with each of my children. We are blessed to be mothers, grandmothers or teachers, or aunts or friends.  We are blessed to share in the excitement of discovery and understanding.  I felt content when I left.

Our next stop was the dialysis clinic.  My labs came back as potassium of 10.1.  My eyes bulged open like a cartoon character.   I have been having muscle twitching and wondered if it was low calcium or high potassium, but *that* high?? So he drew some blood for retesting.  Calcium was 9.1, Phosphorus was 3.6, hemoglobin was 11.2 so those were all good lab results.  Something not normally seen in a hemodialysis patient who has no kidneys at all.  If you didn't read before, I have no kidneys at all.  My diseased kidneys were removed in 2006 and I've yet to receive a transplant.  So I do my treatments at home and I am doing well by them.  Traci (one of our amazing home dialysis nurses - 1 of 3 home hemo nurses and all male - what are the odds of that?) just called me as we were driving the 60 miles home to let me know my potassium levels were only 3.4!! Somehow the blood work had hemolyzed (broken down) and so the results were faulty.  Doesn't explain the spikes in fevers, pain etc., but the really important stuff is okay.

We sat there in our truck at the intersection where one often encounters the homeless or those who struggle more than I.  A sixty something woman was pacing and twitching and jerking with her arm held out holding a cup for "change".  I felt bad, I had none.  There we all sat, some 12 or more cars all our eyes glued to watching this woman pace.  I felt badly.  I changed my gaze as I imagined most of us did to shrug off the guilt.  Were we all so empty of change? Were we scared of approaching her? Were we judging her unfairly? I couldn't look at her anymore.  You see one of the pieces of luggage I carry with me all of the time a huge bag of guilt.  Yep I add to it often and very rarely do I remove any from my bag of guilt.  Guilt for being a burden on the Medicare system, guilt for being fat, guilt for not living up to the expectations of others.  Those are the big ones.  The smaller compartments of guilt are feeling as a failure as a wife, mother, daughter, sister, grandmother, friend.  It is still a large bag and it will likely hold more.  I sat there feeling that bag of guilt way down upon me and I looked ahead.  I looked straight ahead.  There on the back of a truck window was painted three simple words in large bold letters.  It simply said "JUST SMILE :-) DAMNIT!"

I did.  I just smiled.  Then I turned to face the woman asking for money and smiled at her.  She smiled back. I felt that big old bag of guilt get lighter.  I hope I helped.  I felt better for me, and I felt better for her.

For today, "JUST SMILE :-) DAMNIT!

Blessings, Amy

P.S. if the above doesn't help remember that today is "Hug a knucklehead Day".

Wednesday, September 3, 2014

Having better Bones

Well, here I am again.  Posting twice in the same day.  No, its not the end of the world.  My dear friend Dori S.  provided me with a wonderful article.  It is very interesting in that it states their studies show increased doses of Vit K2 helps with not only bone density but also bone pain.  This is something I will definitely print out and take with me to my nephrologist and my PCP(primary care practice doctor).  

I will update as I go.  I am not even certain this would be appropriate for someone like me with all my bone fractures and dialysis, but hey its always worth a hearty try. 

Thank you my friends for caring enough to share.  

SH did all the errands so I am about to start my treatment (a little late).  HUGZ to you all.  You are about to overcome and endure and survive yet another day.  Take a look in the mirror and tell yourself "well done".  Blessings 

Tomorrow will make Today a very good day.

Last night was a restless one for me.  I went to bed around 10:00PM.  I have had a few rough days with little pain control.  I have 5 compression fractures in my spine along with scoliosis (curvature of the spine) due to bone loss.  For some reason, possibly new fractures the pain has been poorly controlled.  I feel as though I cannot breathe, even when I am laying down.  Now for those of you who have chronic pain for whatever reason you will better understand my suffering.  My bones hurt.  My joints hurt.  It hurts to breathe and I cannot sit for very long.  I've also had symptoms that are similar to low calcium levels which include tingling of my lips and muscle jerking.  They started last week, and I drew labs on Monday and shipped them off to be tested.  So for this morning I have been busy paying bills.  I still need to go to the bank and the post office and pick up a few thing before coming home and then getting on dialysis for 8 hours.  I may only get through half the treatment, who knows.  I've been taking my pills properly, and my pain patches but I am quite uncomfortable.

Last night I heard a loud thump.  I was a little worried as SH (Sweet Husband) hadn't come to bed yet.  I got out of bed and started walking out of the room only to discover the room was swirling about me. I began to fall to the floor.  I didn't actually make it to the floor.  The nightstand and dialysis machine broke my fall.  Praise the Lord.  I know I'll have a few bruises.  Better to have bruises than to have broken bones.  My bones are so very brittle.  I broke a finger opening a closet door.  I've broken bones in my feet by falling down.  My feet hit the cabinets in the kitchen doorway.  I must have looked like a split chicken.  Even the bottoms of my feet were bruised.  Try walking on both feet with broken bones in both of them.  Go on, I dare you.  No, not really.

So anyway back to my point....whatever it was.  I am hurting today.  I will get my errands done, bank, post office, store. SH will do all the driving.  We we get home SH will get the machine ready and I will attempt a full 8 hour treatment.  I hope to buy some more yarn.  I am knitting scarves for those on treatment.  If you want one, they are free.  Just send me an email with your favorite color.  I knit while doing treatment (dialysis).  I also read, watch movies and Netflix is my best friend lol.  I'm sure none of you really care what my day will be like, but here's my point.  I woke up this morning.  I am in pain.  I am tired.  I have many long hours ahead of me, but I woke up! I will get through the day.  I will overcome.  I will survive and tomorrow is a new day.

Okay, off to do my errands.  The day will turn out fine.  As long as I wake up tomorrow, today is a very good day.

Blessings & Peace,