Nanowrimo Coincides with Semi-Annual ER Visit!

Nanowrimo Rebels! It has begun! This year, I waited to see what writing needed to come out – fiction or memoir. And once again it is (drumroll please) creative non-fiction. I have some fiction in here somewhere, but memoir is in the way. So many stories, so few written down…. from this year and last anyway. Memoir now. Fiction later. And maybe they’ll collide, in the end.

And so, even though am still disabled and am now in the sad, post-divorce situation where I must work part-time in order to make ends meet, I’ve managed to keep my word count relatively on track. Even more remarkable since I’ve had the flu this week.

In fact, I finally called the MN state flu phone line yesterday after being pretty sick for two days – fever, icky cough, headaches, huge fatigue and body pain to write home about. If you know me, you know that if I’m complaining aboaut extra fatigue and pain, that’s pretty remarkable. The flu hotline nurse didn’t like that my breathing wasn’t as easy as it should be, or that I heard crackling at the beginning and ends of each breath. In fact, she told me I must go to the ER RIGHT THEN to be checked out.

This was a huge mistake. I knew it at the time, but chose to believe the nurse’s concern. But I may have finally learned my lesson: In the US, do NOT go the ER unless you have stopped breathing or can’t stop bleeding. Or you are in uncontrollable pain. If you go with anything less than a life-threatening situation, they will make you wait in agony for five hours, then tell you, “Guess what? You are sick. Go home. Take cough syrup. Use a humidifier. Don’t breathe on anyone until you are all better.”

This was the result after six hours of being ignored in a puke-scented waiting room, not getting the blanket, water, or pain medication I needed so badly that I was weeping say, 70 percent of the time. I would have been much bettter of at home. I’m pretty sure my escapade to get health treatment will extend my illness by several days.

Especially disappointing was that my “primary provider” at this ER was a nurse practitioner. I usually love working with NPs, often finding them to be far more knowledgeable, open minded, and helpful than your average MD off the street. Not this time. She particularly did not like that I am disabled by Chronic neuro-Lyme.

Within the first minute of our relationship, I realized she was bought into the Infectious Disease Society’s criminally negligent guidelines for treating chronic Lyme, and did not want to hear anything that conflicted with them. This had the, some would say, miraculous effect of impairing her hearing, memory, or focus when around me. She was clearly annoyed that I had so much information about my health and treatment options. I do not expect this in a nurse practitioner, especially at Abbott NW Hospital where I have had good experiences before. (Although this was my first ER visit there. And probably my last.)

Well. What does not kill you makes good writing material. And material, dear friends, I have in abundance.

I’ll keep you posted as the month goes on.

August Blues

I’ve been waiting for things to take a wonderful turn for the better so I can report something lovely. Hasn’t happened, so here’s the boring, difficult truth.

The June uterectomy/ooferectomy surgery was a success (seems I had debilitating endometriosis), and I still have one healthy ovary intact. Also survived a July, fully of birthdays and anniversaries with my soon-to-be-ex-spouse (we had a good time together).

But now I am slogging through August trying to continue to recover from surgery while adjusting to new Lyme meds, restarting physical therapy and non-aerobic walking while finishing legal paperwork for the divorce and taxes.

It is all hard, all painful, and from day-to-day seems overwhelming if not downright impossible. I am better in some ways, but am so extremely fatigued that I have the energy for maybe one task per day. On a remarkable day, two. Simply scheduling an energy audit seems undoable, and I really must do it. My electric bill is off the charts — way too large for my small place. And I must also find out what has happened to my application for Medicare B. And apply for some other state services I may be eligible for now. I am still not unpacked — haven’t been strong enough. Haven’t been able to think clearly enough to organize. One of the reasons I put off the energy audit is that I’d like to have a few more things put away and have easier access to all things electric. Hasn’t happened yet.

On top of it all, I am grieving that the life I planned for is completely gone, forever. This takes far more energy that I would have guessed. Small wonder I find moving forward near impossible.

In spite of all this, I think I am a little better, post surgery, although it is nearly impossible to tell only seven weeks out what with all the fatigue. I still need pain meds, although not very much, mostly for Lyme pain. But I’m not writing (reflected in lack of blog entries) or creating any art. A very bad sign.

I read a meditation last night that asked me what gifts I would ask from the Universe to help me through this difficult time. It has never occurred to me to ask for gifts, and I found it impossible to think of anything to ask for since every good thing I have wanted seems to be taken away from me.

So, I guess if you read this, send good thoughts my way, and wish me the energy I need to do what needs to be done. That would seem like a miracle at this point.

Blessings to you all.

Surgery #3 Next Tuesday

The belly pain and nausea are not going away. Pelvic ultrasound (what a euphamism!) shows I have a cluster of cysts on my right ovary that do not look normal, and a 5-7 cm uterine fibroid off to one side. Nothing to panic over, according to all the docs I’ve been dealing with during the last year. More, really. All this has shown up on my imaging for many years.

But because the cysts look abnormal and they could be causing or contributing to my symptoms, they’ve gotta go, along with the ovary they are tangled up with. In. Whatever.

And since I’m not really using it, and the fibroid could also be involved with my symptoms, I decided to let them take my uterus out, too. The left ovary looks to be in good shape, so I will keep that and thus be able to make my own hormones, which is VERY good.

All will be done laparoscopically, which will:

1. Make for a longer surgery

2. Make for a shorter recovery time (2-4 weeks, we’ll see)

3. Add to my belly scar collection

My GYN, whom I adore, assures me this is an outpatient surgery, and that I can climb the stairs to my apartment that very afternoon. But she told me I can stay in hospital overnight if I need to.

So think of me next Tuesday. Before that, too! I have to try and unpack some more and get my place organized and stock my fridge, etc., while I am in what is now a constant state of nausea, and thankfully, only moderate belly pain.

And I hope, hope, hope that, after recovery, we’ll find out that these things were the cause of all my belly problems. Wouldn’t that be great? If not, the search continues, although my periods will not. That alone is going to be helpful!

More as it happens.

Once More Unto the Breach, Dear Friends

Although I’m not King Henry and I’m not battling the French, I am in need of a speech of valor.

I landed in the ER this past Saturday, and was kept overnight until I could prove I could keep down semi-solid food. Ready for this? It was exactly a year — to the day — since I first had these symptoms (severe gut pain and nausea, leaving me doubled over and barfing up everything I’ve eaten during the past month, or so it seemed).

In 2008, these symptoms culminated in five trips to the ER, two surgeries, a ten-day hospital stay, loads of unpleasant tests, including two colonoscopies within five days. Even so, I was left with inconclusive results and the likelihood that my symptoms would return. Possibly in the form of another gut obstruction.

Once more, this past Saturday, all tests seemed inconclusive and every doc I talked to told me a different story. But this time I’m dealing with the U of M hospital, which is at least a research hospital. Perhaps these docs will actually try to find out what is CAUSING my symptoms. Not that I’m going to hold my breath. I see one specialist in two weeks. The other appointment hasn’t been set up yet. I’m supposed to call the hospital if I don’t hear from them in seven days.  Unless I land back in the ER.

I’ll keep you posted. Once more.

And I Was Doing So Well….

Or I was until about six weeks ago, when I started having sporadic, severe belly pain, mostly in my upper abdomen. My doc thought it was possibly an ulcer caused by a medication for joint pain. I cut the medication and started treating the ulcer.

The episodes of pain got worse and came more often, became more generalized over my entire middle section, doubling me over until tears came unbidden. Once a week Twice a week. Then an entire weekend. Finally, two weeks ago on Monday, June 23, the pain was so great that I could hardly stand. I asked my spouse to take me to the ER.

A CAT scan showed a partial bowel obstruction. They checked me into the hospital on “Bowel Rest” (no food, not even ice chips, and lots and lots of IV fluids), which the original doc hoped would fix me.

David Morse

David Morse

Dr. Pierce

Dr. Pierce

But the surgeon (who looks eerily like my favorite character from St. Elsewhere, Dr. Jack Morrison played by David Morse) came in at 10 AM on Tuesday and said the CAT scan showed a distinct blockage in my bowel caused by a kink, or scar tissue, or something else wrapped around it. It was even more remarkable because above the kink, my bowels were swollen; below they were normal sized.

Since I’d had pain off and on for about a month, he was worried about necrosis (dead or dying tissue). Because this is considered a dangerous situation, the surgeon wanted to perform an exploratory laparoscopy ASAP. It sounded like a sound plan. I said yes (then checked with both my docs, who agreed it sounded sound).

I went in for surgery at 5:30 on 6/24. Dr. Pierce poked around for TWO HOURS because once he got in there, he found:



Everything looked good in the bowel department. No kink. No swelling. Nothing like the CAT scan that had been taken the day before. He told me later that, if it was scar tissue or something else wrapped around the bowel, it could have been snapped loose by just starting the surgery, or it could have gone away on its own. He didn’t like the look of my appendix, so he took it out. Basically, the surgery was:


Two weeks later, my four little belly scars were pretty much healed, but I was still having twinges that reminded me of the original pain. In my follow-up appointment, my surgeon located the pathology report on the appendix, which said that I had, “early acute appendicitis.”

“Boy,” said my surgeon. “That sure makes me feel better about taking it out.”

But my belly still didn’t feel quite right. He told me that it might take two to four more weeks to completely heal. If I still had pain after that, I should give him a call.

But it didn’t take two weeks. Two DAYS after my follow up with the surgeon, I had the worst attack of belly pain yet. Yes, ladies and gents. Two days ago at this very time, I was barfing up dinner, bent over in excruciating pain with a fever of 102.4.

Despite my spouse’s best effort, I resisted going to the ER because, despite the good pain drugs they have in the hospital, they don’t let you sleep. And I really wanted to sleep. Once I stopped ralphing and stopped moving, I actually felt okay. Well, not okay, but better. Moving bad. Sitting still, good.

I got through the night sleeping on our reclining couch propped up and protected by six pillows (lying down was out of the question – likely to lead to more barfing and pain). Yesterday, I talked to the surgeon’s nurse for a long time. My symptoms had improved enormously overnight (much less pain, low grade fever, no barfing, just fatigue, a feeling of bloating, and general discomfort), which made us agree that I didn’t have an infection from the surgery (that would cause nonstop pain and fever).

Her advice: Wait for it to happen again, and then dash to the ER so they can run more tests on me while I’m in acute pain.

Sorry to say I have to agree. It could be a bowel that’s twisting and untwisting. It could be something else (although the CAT scan report said that all my other innards looked fine – including gallbladder, kidneys, etc.)

I’m better still today, but something ain’t right, if you know what I mean.

So, if you don’t hear from me, it’s not because I don’t care. I’ll do my best to keep you posted.

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