Nuts and Nonsense
10.14.2024
I'm fine. Fine. Just fine
9.23.2020
RBG Helped Pave The Way
8.12.2018
Older and Not Wiser
My friends are aging quickly. And so, surprisingly, am I. I complained to an older friend about my "mild" arthritis and told her I just hated the doctor saying I was "of that age." She was silent for a moment and then said, "Jeanie, how old are you?" Well! I am only 69, I said back, rather peeved. Like saying I was only 9.
I will be 70 on my next birthday. It amazes me. And how quickly parts of my body will slink past my attitude of denial and remind me that they are also almost 70 years old. I mean - that's 20 years longer than being an antique, if I were a piece of furniture.
I occasionally speak to college nursing students about my journey with Polycystic Kidney Disease. I tell them at the start how old I am because the older you get, the more experience you get in dealing with the various stages of insurance, and Medicare. When I said it the first time, during my first talk, I almost got myself off track because my mind was saying, "yeah, and these 'kids' are 20 years younger than my own children." Do college age students really pay attention to someone who is older than an antique?
Oh! And to add insult to the aging process, Medicare allows annual "wellness" checks, which includes a series of questions to determine if your doctor needs to talk to your children about putting you into an assisted living facility. A friend just went through this with her mother, who is 84. That is only 15 years away for me!!! Then there is the "clock" test. You draw the face of a clock, put the numbers in, and make the hands show 11:10. And there are no real clocks in the exam room.
When I am sitting comfortably, drinking my coffee, I imagine my day. My "to do" list includes washing all the cupboard doors in the kitchen, finishing off with scrubbing and polishing the floor. Clean the bathroom including the toilet, scrubbing the bathtub, washing and polishing the floor. Cleaning the living room and making it simple and clean looking, with no clutter on the coffee table, no stacks of books to read and books to take to Goodwill. Then I get up and can't stand up straight because my lower back is killing me. And I solemnly note that I can't even begin to do that "to do" list. I think I can barely manage to sweep the floor.
Now the bitter sticky part. My seven years on dialysis damaged my back (sitting in a recliner for 4 hours a day, 3 days a week), and two vertebrae are tipped into my sciatic nerve. I have severe stenosis of the S1 vertebra. (I had to look up "S1" and "stenosis" and I'll leave it to you to research that for yourself.) Two years ago I received my new kidney, for which I am always, always grateful! However, I discovered that because of the stenosis, I couldn't begin to get back to regular living stuff. I can barely stand in one position long enough to do the prep work for dinner let alone washing the dinner dishes. I am most comfortable laying down or sitting.
Now I am scheduled for major surgery to fuse L3, 4, 5, and S1. In two weeks!!! During the pre-op exam, my EKG showed I have something wrong with my heart and now I have to see a cardiologist, who will decide if I can go through with the surgery. It is overwhelming, daunting, and further chipping away at my self-confidence and my way of life. So, now I'm worried all the time. Will I die during surgery? If I don't have the surgery, will the pain just get worse and worse until I MUST go to assisted living, or worse, a nursing home? In my mind, I still dance to music on my stereo. I still run in fun runs. I still move boxes and furniture like I was fit and firm only a few years ago.
Today I even looked up counselors in my area because I think I need to talk to someone. (They ask that in the Medicare questionnaire, but I refuse to answer - I always say I am fine, thank you very much; just fine.)
Getting older doesn't make you wiser. It just makes you realize you can't do things any more. It makes you realize there are very few years left. Maybe 20-21 years left for me? It is somehow sad.
I miss my life - somehow, part of me didn't keep up with the rest of me and went off on its own merry way.
2.02.2016
Thoughts While Testing for Transplant
It's been quite the journey. I have Polycystic Kidney Disease (PKD), diagnosed a million years ago, when I was 28. I started transplant testing seven years ago, started dialysis six and a half years ago, went through annual bouts of testing, and finally have reached this point, today.
I have spent the last two weeks having several tests, including an MRI of my brain and neck; endoscopy, ultrasound of my stomach and all the various organs. I will have two more this week, a cystoscopy and a stress echo.
I have kind of dreaded these tests. For the past six plus years, there have been many reasons to put me on hold on the transplant list. (They call it "inactive"). And every time I go through a test, I wonder if THIS is the one that will show something that will cause the beady eyes at the transplant center to put on the brakes. I mean, I have been steamrolling down the track the last year, roaring along towards my goal of a kidney transplant. I had several fund raisers this last summer; several individual donors to my cause. My thank you list is longer than my Christmas list and more than half of my Christmas list are not on my thank you list. But I still am composing an announcement (It's a Kidney!!!) that will include both lists and people that aren't on either list. My neighbors, my pharmacist, my nephrologist, my dialysis center, about ten other doctors I have met along the way, people walking by, people standing in the line at Albertson's, strangers.
The hospital where the transplant center is located has this nifty new records system, called Epic. All tests results go to it and the patient gets an email whenever a test result shows up. So, the test results are starting to come in. Blood work on weird things like clotting abilities, antigens - stuff I have to use a medical dictionary to decipher. Saturday night the results came back from my endoscopy. I have the beginnings of Barrett's Esophagus - a potentially dangerous disease that is pre-cancerous.
Whoa! My eyes bugged out and my hand clutched my throat (probably trying to feel the frayed, scarred lining of my esophagus from all those nights of scorching acid reflux attacks). (This is directly related to my polycystic kidneys growing so huge and pushing my stomach up against my esophagus.)
I started to panic. Mechanic Man said not to worry. The surgeon said not to worry. Today my nephrologist said not to worry.
But that's me. Worry is my middle name. I just can't seem to give my worries over. I can't release them. So, I lay awake at night and don't sleep. Worrying that THIS will be the reason to become "inactive". Now, when I am days away from getting a transplant.
1.02.2014
Grateful Resolution
First day of the year!!! A clean slate. An actual “Do-Over”. A day when my resolutions will be 100% successful!
This year, though, I simplified my resolution(s) to simply count my blessings all day long. Also, to be joyful; to be kind; to have a spirit that dances; and to be thankful for every good and bad thing that happens to me.
I want to have an Attitude of Gratitude, and be thankful for all the things I love in my life. I also will be thankful for all the bad things. Little trite phrases come to mind, when I say that. Like, “Behind every cloud there is a silver lining.” “When you get lemons, make lemonade.” If I get a red light when I am desperately in a hurry, I want to take that moment to be thankful for the red light, to slow down and “smell the roses.”
I have many blessings!
At first, when I was starting this about two weeks ago, I thought - Hoo Boy, I only have about five blessings to count. But then I got started being thankful for each blessing and more popped into my head. I listed my Mechanic Man, my sons, my daughter-in-law, my grandtwins :) and my cats. Oh, then being thankful for the really beautiful sunsets we have had lately (and thankful I caught a fantastic shot with my cell phone) (being thankful for my cell phone). Then there's all my friends both in person and on Facebook and The Spokesman Review's Huckleberries Online and Community Comment. Babies. The scent of Lilacs. The crunch of my feet on icy grass. The taste of cold, cold water from the tap. And it goes.
I encourage you to count your blessings. If you are having worries or feel despondent (as the Holidays tend to make people crazy), stop your thought and start counting your blessings. You'll find that pretty soon you are taking what was a problem or worry and turning it into a blessing to be thankful for. There's no room for negative thoughts if you are spending all your time thinking positive thoughts.
I want you to feel joy welling up and a dance in your feet as you go into the New Year.
Blessings!
~ Jeanie
5.02.2013
Stuff
I went through my paperwork for setting up to be on the transplant list and one of the first things it mentions is that I need to have "adequate insurance." This was before I even started dialysis, and at the time, I had more than adequate insurance - in fact, I had excellent insurance.
But six weeks after I started dialysis, I was let go from my job. And that meant I would lose my excellent insurance and eventually I qualified for the state health insurance pool (I qualified because other insurance companies rejected me) and it does NOT have prescription coverage.
So - I applied for Part D insurance for drugs I **might** take maybe two-three years down the road, and paying a monthly premium for a policy to cover drugs that I don't take now but might if I have a transplant but then if I have a transplant, I will not be able to pay the co-pays of the various drugs to the tune of about $550 a month (this is from a printout I have of what my Part D will cover). And that does not include one drug that my insurance does not cover at all that is about $1,500 a month. However, that drug's manufacturer will give me a discount and a grant once I pay the cost and then reimburse me. But I have to apply for the grant every month. It's not like these drugs might give me a "trip" or "high" or something. They simply fool my body into thinking that the new kidney is not an impostor.
I am thinking that maybe a transplant is not in my future.
On to something else. I am always reminded, ALWAYS, that being on dialysis is not the end of the world. Other things could happen. Other things HAVE happened. Just because I have one thing, doesn't mean the mean medical gods won't pile on other ailments on my already full plate. And then I'll learn that someone else has something way worse than a simple little trip to the dialysis center three days a week. My 36-year-old niece, Jaime (the daughter of my ex-husband's sister and the first cousin to my two sons) had an asthma attack four weeks ago that left her without oxygen for eight minutes. Long enough to cause unknown damage to her brain. She has been in a coma for the past 31 days and we, her family and friends, have been praying hard for her. She has a very sweet spirit and optimistic outlook - she too has had several different medical problems including MS and lately this issue with her breathing. In and out of the hospital. Always maintaining a sunny disposition. And now unconscious. We don't know the damage yet. We wait impatiently for her to wake up.
So, I am praying that you will pray as you read this. That God's hands are embracing Jaime all the time, that His Angels are watching over Jaime and are her comfort in this ordeal. That God's embrace is around her Mom and Dad and sister, Katie. That we are all in His care and under His wing. May God heal Jaime totally back to her sweet self.
3.22.2013
My Left Kidney
I have gone through three years of transplant testing and during that process, it was discovered that I had a tiny spot of cancer in my left kidney. Eventually, I had both kidneys removed because they were so large (18 pounds total).
I have been on dialysis for three and a half years, starting in September of 2009. I lost my job as a result two months later. Since then, it has been almost a full-time job just to balance my weight, the fluid I consume, my blood pressure medications. It's a rollercoaster. I will have a couple weeks, where everything is just right. And then something will tilt and I'll have extra weight or higher blood pressure or my blood pressure will crash. Then I'll spend a few weeks adjusting my weight again, adjusting how much fluid is removed during dialysis, and how low my blood pressure is when I end my session. And finally, again, I'll reach a point where I think, this is just right. But Murphy's Law prevails. And none of us (my seatmates) is exempt.
So - this blog is slightly revamped now. We'll see how this goes.
2.07.2013
To Be, Or Not
Dad announced to us on that Friday that he wasn't going back to dialysis. Nine days later, he died, after spending a little over a week indulging in everything the center said he should avoid. Coffee. Nuts. Strawberries. Orange juice. All the liquid he wanted to consume. He was happy and actually the healthiest I had ever seen him. Whenever Hospice came in to do his vitals, I wondered if he was making the right decision - but in the end, yes. I think it was the right decision. He had little quality left to his life. Sleeping most of the day. Being confused when he was awake - thinking that whatever was on television was happening in reality. Using a walker. Wetting himself. Not being able to eat much of anything and then throwing up when he did.
So - I related to my neighbor but was sad about it too. This one decision (to not come back because our sites quit working) is one we all face eventually. So far for me - I'm doing great. It's been three years (thirteen for my neighbor). Transplant is the only saving grace and for my friend that is not an option. He is too ill, veins too wrecked, to handle a transplant.
Then today I got a letter from the transplant center stating that I was **back** on hold because my finances will not be able to handle one of the non-covered anti-rejection drugs I am required to take. With my insurance, that one particular drug is still $550 out-of-my-pocket a month.
It's daunting to think that maybe I'll have to make this same decision some day. To not go back to dialysis.
2.04.2013
Writing About Nothing
I cannot believe how time flies when I have nothing but mundane things to do with my day - all boiling down to dialysis. I really, really try not to make it a priority in my life but on the other hand, it is a necessary evil to make it my number one focus. There's all that food to NOT eat. There's the blood pressure. The heart rate. Will the sites work TODAY. And then, after having my kidneys removed, there's all that water to NOT drink. The rule of thumb for my little food diary is, "if you like it, you can't have it." Foods with potassium (think any citrus fruit, chocolate, dairy). Foods with phosphorous (meat, eggs, dairy, actually anything you can think of). I am limited to 20 oz of fluid a day (including soup, jello, ice cream, ice, alcohol).
I am my own bobblehead.
I plan out my food and liquid. So - if I have dinner with the girls on Wednesday - I won't eat all day but I'll enjoy a steak and salad with my friends AND a coveted cocktail. Lemon Drops are only 4 oz. Woo Hoo.
In the meantime, I'm not writing. Why is that? Things have shifted so much in my life and the creativity gene just isn't functioning.
Just know that I am plugging along and actually feeling darned healthy! If I could just have a second brain to worry about all that icky potassium and phosphorous and sodium stuff.
12.30.2012
No Resolutions Necessary
12.17.2012
Temporary Lull
After my summer of in-and-out hospital visits and surgeries, I have a different perspective on life. Mostly, I am exuberant to even be alive. I had a couple close calls this summer, and I remember having absolutely no energy but wanting desperately to clean my house and find my Will. Silly.
I have much to be grateful for - in particular, my new grandbabies, Hunter and Abigail. But I've only seen them three times in the last four months. It's been sad and wonderful at the same time. I am in awe when I see them and my heart breaks when I don't.
Recently the son of an older friend came to my door with her Christmas card in his hands. She died on December 11, suddenly and without lingering or pain, but still..... The loss is thick. She was my mother-in-law's best friend and when she passed away, she became my best friend. 20 years older than me.
There has been a lot of loss lately - added to that the overwhelming loss in the United States with the deaths of 20 children in Newtown, Connecticut this week.
The pen just isn't flowing.
We need healing. Lots of healing.
11.27.2012
My Grace
11.04.2012
More Random Thoughts
* Four weeks of no lifting anything to finally being able to do the dishes tonight! It was very satisfying.
* Tomorrow I'll even dust.
* Walked all the way around Winco - which is huge - and I think counts for one of my walks down to the school yard.
* Still anxious. It's like I've drunk 10 pots of rich coffee.
* Still somewhat depressed; however, I am NOT going to say out loud that it might get worse.
* It's all about attitude.
11.03.2012
When Henry Died
We had been in Val d'Or for almost two years. He had been invited to go on a small Cessna plane to Hudson Bay with two other Americans (one our commander) and two French. He turned them down because he was working that shift.
It was a big deal - big news - that they were on a joy ride in a Cessna, that they'd planned on returning Sunday.
Sunday came and went - everyone was certain they had crashed. The whole community of both French and English were rooted where they stood, waiting, waiting, waiting for that plane to appear in perfect condition and everyone aboard would be laughing as they left the plane.
Monday, Tuesday, Wednesday - all day long, every day, encased in the sounds of helicopters over head. Helicopters looking for that plane. I stood in my kitchen and watched and sobbed because I knew they weren't finding live bodies. I knew it was awful. I knew that plane had crashed. Which it had, on Sunday, 10 miles from the base.
My husband was one of the Airmen sent to the site to collect everything - pieces no bigger than a piece of bread. One wrist watch that he found was flattened as if it had laid on a railroad track.
There was a memorial service for all four (one, the Commander, a good friend). It was very formal and mostly in French. I couldn't stand it. It was unbearable to think that in this SMALL unit, we lost four of our men. I was beside myself with grief. And in front of the four caskets was a flower display made to look like a little yellow Cessna.
My husband kept telling me to get a grip.
That night (of the funeral) we decided to try to laugh about something (and be in English) - it was March 18, 1975, the night of the funeral. We were looking forward to another funny episode of M*A*S*H.
That night, March 18, 1975, the last five minutes. . . . . . . . . . .M*A*S*H killed off Henry Blake!
The air whooshed out of my lungs and I clawed my way to my children's bedroom where I sobbed until I could sob no more.
I cannot even watch that episode anymore without tears.
In August our base was closed. Everyone left. We left together, and made a caravan to our new locations - several of us posted to Missouri. One of them was supposed to be the Commander, who left a 6-month old child.
I think of those four men and the wives and children left behind. When M*A*S*H is on; when helicopters fly over the house; when small planes circle around for the small air strip a mile down the road.
Good night, Henry.
11.02.2012
More Random Thoughts
* I still cry at commercials, but I'm getting better (until I found out I was deleted from the list of favorite blog rolls)
* I am walking further and further away from the house, my safety zone. Once Mechanic Man called me on my cell as I was just reaching my goal of the edge of the school field. He wanted to know how I was doing - and this is a straight stretch of road - so I told him I was fine and turning back - there he was standing in the middle of the road watching me the whole time.
*I feel measurably better today for the first time. Usually I don't feel like I'm making any progress at all.
* Four weeks since Open Heart Surgery and I am HERE and ALIVE.
* Still seek prayer in so many areas of my body. When it was just dialysis, I could go on with my day like I was a normal person. Now, every twinge is a reminder that I MIGHT still have the bacterial infection.
*Treatments (IV antibiotic) will end their daily march on my life on Veteran's Day.
* I ask for God's healing presence to surround me, embrace my body head to toe, extend to wherever I am at - home, dialysis, store. May that healing presence constantly do miracles in my body.
*Made cupcakes today - my first "cooking" since I went into the hospital. (Of the several things I can't do, said my doctor, I can't cook - and I thought that was ironically hysterical.) As in ROTFLMAO,
*Grateful for all my friends and family and especially those on the HBO blog. I've known them for four years; we've met several people many different times. I'm hoping one of them (the beer maker and BBQer) will feed my soul with his great, great beer and his melt-in-your-mouth pulled pork. OMG!
10.29.2012
Believe, Hope, Peace, Gratitude
I have faithfully been upbeat and positive over the last few years. And that attitude has paved my path. But sometimes, I just feel despondent, almost like I've lost a loved one.
* I cry when nobody is looking.
* To punish myself just a little more, I'll watch sad or emotional movies and sit there and sob.
* I am grateful to be alive. When I finally became aware that my surgery was over, I had a tube down my throat and couldn't talk - but I knew that was coming - and I smiled and gave a thumb's up sign to Mechanic Man (who took a picture of me with my phone).
* Grateful for Mechanic Man plodding through each day, for being there all the time, for keeping his emotions in check (because I think he hates this more than me), for cooking, cleaning, washing, etc., etc., while ordering me to sit still.
* Again, I'm grateful. Thank you God for hearing me. This business of handing over my worries to you is not that simple.
* I lay awake at night and think that there's been way too much stuff happening to my body.
* Then I grieve for a friend who died just a week after I was released from my latest surgery - and think about him being on the same floor.
* I grieve horribly for the missed baby snuggles with my new grandtwins. (They are 11 weeks tomorrow - I've seen them three times.)
* Very grateful to my son who came to the hospital from Moscow, Idaho with the greatest grandma gift you could ever ask for - a digital photo frame loaded with 75 pictures of his then 7-week old twins.
* Very, very grateful for a picture of my granddaughter, Abigail, with a small grin on her face. It hung on my wall at the hospital and cheered every single person who came in - including stuffy doctors.(No that was a smile; not gas).
* I take that back - my doctors are not stuffy. They are like fathers or brothers in a very loving family.
* I feel fragile - it is going away, day by day - but for a couple weeks, when I did my marathon walking two blocks and back - I walked like a hunch-backed 90-year old lady, clutching my arms in front of my chest (to protect that sternum).
* Will this endocarditis come back? (Had it once in June and I thought that made my dues paid up for extra illnesses.) Endocarditis three months later. Open Heart Surgery.
* Am I going to die?
* I'm very emotional, very introspective. I really need to master this giving-it-to-God trick. We're in a tug-a-war. He says He'll take care of it, I say but I need to do this myself, He shrugs and says He'll take care of it. Eventually I release my worries (of that moment) to Him and find peace and hope.
10.11.2012
Fear of Words
Hearing that I needed to have open heart surgery was scary and surreal. Actually having open heart surgery was just as scary. But when I became aware of the time on the clock and that I was in Cardiac ICU, I realized that I had survived! They had me sitting in a chair two hours later. Walking to the hallway the next day. Walking around the halls the next and then suddenly they are saying - you can go home!
What is unique to me is really routine to the hospital. I had one of the finest surgeons in the state of Washington. I had excellent care. And I even liked the food.
So, now I am home, "protecting my sternum." It's a constant in my brain. Don't lift anything, don't push yourself up by your arms, use your legs, don't cook, don't clean, don't drive, don't bowl. Just protect your sternum.
Prayers have supported me and sustained me. God has plans still for me and of that I am grateful.
8.20.2012
It's a Miracle!
I watched my son, my baby, take on this new role of Double-Duty Daddy and was in awe. The miracle that I once carried was now nurturing his two children that was totally awesome!
We all want to be better parents than our own parents. I think it's kind of normal. But to actually see that in my son - that he showed the epitome of unconditional love to each child was breathless. He had no father to emulate and his God-like loving of his new babies came from within. Came naturally.
This is the son that caused me much heartbreak in his teens. This is the son who always tells me how sorry he is that this heartbreak happened. This is the son who, when he got married, was probably the happiest groom on this planet! This is the son, with tattoos all over his arms, who gently held a baby and cooed at him or her and told them what a wonderful baby they were. He has changed 16 diapers so far. He is holding a baby all the time.
And the same for his wife, my daughter-in-law. She could BE my daughter. She came into our lives and I swear to God that she saved my son's life.
She also was cooing and praising her babies - each separately and individually. "My little man." "There's my little princess."
What a miracle!!! They are so beautiful - all four.
I'm greatly blessed.
.
8.17.2012
8.13.2012
10 Reasons to be Grateful For Having My Kidneys Removed!
Just four weeks earlier, I had spent nine days in the hospital, not related to my kidneys at all. I felt that all the drama I went through in getting different diagnoses was just a practice run. But I wanted to approach my surgery in a different way.
So I went about finding ten good things about having both kidneys removed. I figure there has to be a positive spin here somewhere. But first, I went to several prayer circle friends and told them my prayer for me. I wanted peace and grace in this next stint in the hospital. I wanted calm and hope.
We all came up with themes in the Bible that encourage you to give up your worries and replace those little bundles of fear with peace – the kind only God can give. He asks you to release your burdens and worries and instead take His peace.
1. One thing I’m grateful for in losing my kidneys, is that I could practice what I was praying – and release the fear (of dying) to God and instead hold the peace He gives to me – His peace.
2. It is actually quite peaceful and quiet after surgery and you appreciate little things so much – like shaved ice and orange popsicles.
3. Who needs two kidneys??? We can survive on one. So – I was getting two birds for one stone! Plus, I was already on dialysis, so nothing new was happening.
4. All that space! (the kidneys weighed about 10 pounds a piece. Yes. I was hiding twins!)
5. I have a waist! I haven’t had a waist since my last baby was born – he just turned 38.
6. I can breathe!
7. To all of those who rolled their eyes at me when I said I had a back ache “because of my kidneys,” I don’t have a back ache any more. It really was my kidneys!!!
8. I can lay on my back and feel a flat stomach!!!
9. I get to buy new clothes! Why??? Because. . . .
10. I am my old college weight! 120 pounds.
Oh, and 11. It was indeed cancer but since it was contained in the one kidney, I am CURED.
I feel like I’ve spent the whole summer, recuperating. This all started June 1. I will be fully recouped by mid-September. The one regret I have is that I will miss the birth of my two grandbabies. Mommy will be induced Thursday and maybe Friday I can travel to Moscow and at least see the grandbabies.
Hopefully by September I can make longer visits and be of some help around the house – and take in dialysis at another facility – one in Lewiston and one in Moscow.