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.
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.
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.
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.
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.
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.
* 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.
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.
* 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!
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.
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.
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.
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.
Since the beginning of June I have not felt well. At all. I went to urgent care two days in a row. Finally, their blood work on me produced a diagnosis. I had a staph infection of the blood. And I thought I had a whopping kidney infection – and after all of this, that would be a truly trivial deal.
Once I got to the hospital, though, there were a couple days of loading me with antibiotics. Then, the morning I was going to go home – only a couple days later – they ran another test and said I needed to stay and have a second, more detailed scan. Now, I not only had a staph infection but I had a cluster of bacteria growing around my heart valve – called “vegetation.” And I can never think of the name, so I usually say I have a bloom. Sounds better.
Then I was losing blood internally – to the point that I needed to have several units of blood. My first transfusion. I was kind of hesitant to do this because it changes the antigens in my blood that will be matched for a transplant. So – now I’m different. I have seven different people’s blood in me. I wonder if I will take on different traits? And finally the hospital fixed the bleeding problem.
At one point they told me I might have to have open heart surgery. Then they said, no – the hole in my heart is tiny and something I was born with.
You know it’s got to be pretty bad when the chaplain comes in and says a prayer for you.
It led me to ponder attitude. Attitude is everything – but I could feel myself losing my grip on my positive attitude. I was thinking, “oh, dear, I could die.” And then I was trying to unring the bell by trying to erase that thought. You know, the whole, you-are-what-you-think deal. I’d press my lips together and try to think of something else.
It’s truly amazing how your reaction will domino to your partner. Every piece of news we got, we’d stoically sit there – both of us thinking – this is really bad. Both of us in a daze, as I went from one diagnosis to a worse diagnosis.
At the end of my stay, I seriously looked for cameras for “House.” I was an episode of “House” where this would go wrong, that test would show something else, another thing would go wrong – only not through a one-hour episode, but through several days.
We all get a lot of “stuff” on our individual plates. Some of us have a disease. Some of us have cancer. Some of us have kidney failure. If the Keeper of the Disease of the Week held your plate out in front of you and said, “Here, you can have THIS on your plate, or you can have THAT on your plate. Your choice,” well, I would be content to just keep my kidney failure, thank you very much. But there are others who have additional things – like Diabetes. Or cancer. And you think to yourself, wait a minute! My plate is full! I don’t need any more diseases. But some people just have more than their share.
I am so grateful to be home and not in a hospital bed. After this is all over (six weeks of daily antibiotic treatments), I’ll try to beef myself up for my next item on my “plate” and that is to have my left kidney removed because it contains a suspicious looking cyst.
My writing is decidedly boring – but this way I connect with all my friends so they know what’s happening to me.
Now there's a spot on one of my kidneys. This was discovered during one of the gazillion (seriously) tests I've taken over the last three years to get on the transplant list. And that's another story. (I'm on the list, but since my COBRA ran out, now I'm on hold until I get Part D insurance under Medicare.)
Anyway - there is a spot in the top center of my left kidney that might be renal cell carcinoma. And then it might be just a cyst filled with blood vessels. But they can't do a biopsy because they don't want to risk the chance of spreading cancer cells. This is all in preparation for that coveted day that I get "The Call" for a new kidney. After the transplant I will have no immune system and any cancer cell - I mean ANY single cancer cell - will explode into a rampant, full-blown, fatal cancer.
So - I saw a surgeon a couple weeks ago and he is "certain" it is cancer and I need to have my left kidney removed. There is an upside to this - my kidneys are so huge that it is amazing I don't look pregnant. They are overtaken by cysts, and the cysts have cysts, and the mutilated, deformed kidneys are each about nine inches long, probably 8 to 10 pounds a piece, and are taking up valuable space for a new kidney.
I got a second opinion yesterday and this new surgeon suggested that I have BOTH kidneys removed because they are not functioning. They don't filter any of the toxins that kidneys normally filter. They don't help produce oxygen in my red blood cells. What little urine I produce is only a psychological benefit - my mind thinks I'm doing just hunky dory because I still pee - dialysis is just a thing I do every other day. I'm perfectly fine, thank you very much. Only, I'm really not fine - my insides are squashed by my bully-bad kidneys that are doing nothing but continually growing and forming more cysts.
Surgery is scheduled in three weeks. And I'm kind of scurrying around tying up loose ends because this is a pretty damned serious surgery.
Also - if this little questionable cyst turns out to be cancerous, I am on hold on the transplant list for two years. So - the clock is ticking.
Only, not today – both my sons live out of town – one near Moscow, Idaho with his very pregnant-with-twins mother-to-be wife – and one who lives near Laughlin, Nevada. Both sons will have their fill of mothers today – wife and mother-in-law for one, a gazillion-million grandmothers flying in to Laughlin to gamble, hit the slots, drink fluffy low-alcohol drinks, gamble, twitter, giggle. . . . and gamble. . . their way through their day – for the other one.
But I have a little mother living right here with me – my new kitty that adopted our house as her new home six weeks ago. Unknown to us, she arrived already knocked up. And so we spent days thinking, isn’t she cute – she’s eating so much that she’s getting a little chunky.
And then. . . .
She had three kittens last week – and it gave me pause to think of mothers of another kind – animal mommies. Mothering is totally instinct for animals. They don’t even think about it. For that matter, they don’t even know they are pregnant. They don’t attend birthing classes. They don’t have showers. They don’t cry at the drop of a hat when they get panic attacks, thinking of all the future days of breast feeding, changing diapers, running after a two-year-old getting into trouble, leaving them on their first day of school, ALONE, arguing with a teenager, watching them graduate, planning their mega wedding, holding their “baby’s” first baby (all this thought in one blink while worrying about giving birth in three months). Animals don’t do any of this.
And most animal mommies are instant single Moms of multiple babies. Right off the bat! And they just go along with it. No trauma. No, oh-I-wish-I-could-go-out-and-spend-time-with-other-adults-partying-all-night. No being depressed that they are all alone in this parenting thing. They just take care of it.
My kitty is just a natural mother. She attends her kittens twenty-four/seven, and allows herself brief little breaks maybe three or four times a day. No complaints.
She did, however, MOVE her kittens from the Kitty Castle to a hidden, hard-to-get-to place in the corner of our bedroom, at the foot of the bed where I have stored stacks of winter blankets, shoes, books. There is this one small open spot just big enough for a small-sized mama cat and her three kittens to curl up and nest – unbothered by humans just having to pick up the babies and examine them. Hell no – I’m not going to do that again – she might find a place I can’t get to at all. This way, I can hang over the edge of the bed and “look” at the kittens, while petting the Mommy and telling her what a good job she is doing.
Happy Mother’s Day, Gracie Kitty!
Now, I’m going to stare at my cell phone and send mesmerizing, hypnotizing thoughts to my two sons to call me.
Oh, dang it all, I’m just going to call them myself and tell them Happy Mother’s Day. After all – if it weren’t for them, I wouldn’t have this special, be-kind-to-me day.