Wednesday, October 7, 2015

September Miracles

Hello, fans!  Sorry it's been so long.  Lots of things have changed and I've been putting off explaining it all.

Last I wrote, I was dreading the possibility of having to do emergency hemodialysis through a central line.  Well, shortly thereafter, I began having pain with breathing. After a few days it got pretty acute, so I went to the ER to make sure it wasn't a heart attack or pulmonary embolism or something. They did several tests and concluded that it was probably an esophageal spasm, so they sent me home.

A few days later, the pain was getting really severe, so I went to my primary care doctor.  He prescribed me some steroids -- I don't remember why -- and told me that if the pain got worse I should go straight to the ER. The pain was increasing even as we left his office, so I just asked Jacob to drive right to the hospital.

At the ER, they were having a busy day, so they stuck me in a triage room. The pain continued to increase until I could barely breathe; I was taking very shallow, quick gasps as I wrapped my arms around Jacob's waist and buried my head in his chest. After more than an hour, they finally gave me something for pain, which ended up not doing much. They tried a couple of different things, and the only one that helped at all was fentanyl.

After an EKG, chest x-rays, blood tests, and more, they decided to admit me overnight. My brother kindly made the hour-and-forty-minute drive up to stay with me so that Mr. T could take Sunbeam home to sleep.

One night turned to eight as the doctors struggled to first diagnose my problem, secondly treat it, and thirdly get my pain under control. Various family members came to see me, some staying overnight, and Sunbeam spent two weekends with grandparents (one with each side) so that Mr. T could spend more time with me. My dad gave me a priesthood blessing, in which he mentioned that there were many miracles yet to come for me. I have already seen that coming true, as follows.

Saturday, August 22, 2015


"Set in order your houses; keep slothfulness and uncleanness far from you."
~Doctrine & Covenants 90:18

I have a strange relationship with organization. If you could come to my house, you'd see what I mean; it's a sort of melding of absolute order and absolute chaos. Granted, a lot of that chaos is created by another member of the family, but even leaving her messes out of the equation, it's there in the details.

Adult movies, alphabetized, with BluRays separate -- and my shelf of random stuff.
If you asked my parents or siblings if I was an organized person, they would probably find a polite way to say that I'm a pack rat and a slob. Ask my husband or the ward ladies who occasionally come over, or anyone who cleans at my house, and they would probably tell you that I am meticulously organized. And they'd both be right -- partly.

Saturday, August 15, 2015

Requesting Prayers This Weekend

I need prayers, folks. On Monday I had my routine monthly blood tests, and on Wednesday a different doctor also took some blood. Today I get semi-panicked phone calls from both offices telling me that I'm highly uremic (there are a lot of toxins in my blood). My nephrologist wants me to do a few sessions of emergency hemodialysis.

"Go for the jugular!"

This is the scar I have from the last time I had emergency hemodialysis.

Thursday, August 13, 2015

Nature Calls

"If I knew where you lived, I would send you a bouquet of freshly sharpened pencils."  ~NY152 to Shopgirl, in the movie You've Got Mail (1998)

I finished college more than three years ago, and graduated from high school more than twelve years ago, but when school supplies start showing up in the stores, the part of me that's still a kid remembers the excitement of getting all fresh supplies at the beginning of the school year: a new box of crayons, new notebooks, new glue sticks, maybe something like a protractor that demonstrates the new heights of learning that I have attained.

Thursday, August 6, 2015

Only the Lonely

There’s one service that I really need, but that people rarely consider, because it’s not the type of thing you sign up for. In fact, if you do it just as “service”, it becomes meaningless; I need company. Not like, “Sister So-and-so is in the nursing home and would be cheered up by visitors,” but like, “Sunshine seems like she would be really interesting if you got to know her. I should call her up and see if we can get together some time.”

Monday, August 3, 2015

Post 5 of 5: The Ultimate Question

The first four questions are ones that I usually get from concerned friends, relatives, and acquaintances who are aware of my condition.  There’s a different question that I occasionally get from acquaintances, but mostly from friendly strangers and sales clerks:  

Are you expecting?

Sometimes phrased as, “You are expecting, aren’t you?” after having made some statement with the unspoken assumption that I was. Once I got, “When are you due?”

Wednesday, July 29, 2015

Post 4 of 5: That Was Helpful

Post 4 of 5

Fourth question:

“Do you need help?”

It depends how you define need. 

But before I go into that, I’d like to address the whole issue of charitable service. This is going to be a bit long and rambling. I’ve been developing my thoughts on this subject for at least a decade, but the last couple years have given me an insight into the position of the person in need of service.

Several years ago, a young man shared a quote in Sunday School, which changed the way I saw people and service.  It comes from this article by Rachel Naomi Remen, M.D., and I highly recommend that you follow the link and read the whole thing. Twice. I have extracted the key ideas:

Monday, July 27, 2015

Post 3 of 5: The Problem of Pain

Another question I often get is,

"Are you in pain?"

I usually say no, because I assume that they're referring to my kidneys, and it's not as though I had cysts or kidney stones. But kidney disease aggravates any other conditions you have and also causes new ones, many of which do cause pain. So yes, I am in pain most of the time. 

I have scoliosis (always have), so most days I have mild to moderate achiness in my back, neck, head, shoulders, and ribs, which occasionally becomes acute; I also have frequent stomach aches and heartburn/acid reflux; periodically, I get excruciating intestinal cramps, leading to bouts of vomiting, after which it takes me several days before I am able to eat normally again, which in turn causes weakness and sometimes potassium deficiency. I also get migraines, which often come in clusters and which also cause vomiting. (My stomach is so sensitive now: I think that I've thrown up more times in the last four years than in the rest of my life, combined.)

Post 2 of 5: The Transplant Question

Post 2 of 5

An understandably common question I get is,

"Any progress in getting a transplant?"

For the last year I've had to give the same disappointing answer: "No, first I have to get some genetic testing done to see how aggressive my disease is, because I have an autoimmune condition; they won't want to take live donors if the kidney isn't likely to last long." 

The testing was originally supposed to have been done by New Year, but come March, I still hadn't even gotten approved to have the samples taken, never mind getting the results. Finally, in April, I got to do that, and the report came on July 6. All I could tell from the technical, sciencey language was that I did have several abnormalities, but not the ones they might have expected to find. But on July 21 we had my annual visit to the transplant clinic, and the doctors there evaluated the report.

Post 1 of 5: Questions Answered... Thoroughly

Hi, everyone; sorry it's been so long. My laptop broke and we still haven't replaced it, and it's no fun writing anything long on a tablet or a phone, especially when the stupid predictive text always chooses the wrong word (I swipe "sincerely" and it gives me "Shively"???) and auto-"corrects" things that are exactly as I intend them to be!  But I'm doing it now, for you. Don't mention it. 😊  

In addition, I've been sick and tired and also on the road a lot. Like a lot a lot. I did compose drafts of posts two or three times, with photos and everything. But I never finished them, and by the next time they were obsolete. Well, one of them might still be helpful; I may post it belatedly.

I'm here to give an update on my health and related factors. I want to preface this by saying that I am generally happy with my life and pass most of my time doing things that I enjoy. I'm going to present a pretty miserable picture of my physical condition, but I'm not miserable (except in moments of severe pain or sickness). My physical condition is only one aspect of my experience of life. I consider myself very blessed!