The talk
Sunday May 31st 2015, 9:49 pm
Filed under: Crohn's flare,Family,Friends,Life,Lupus

You know how here in the drought we’re supposed to catch the water in a big dyepot while we’re waiting for the shower to warm up?

When you’re in a rush to get ready for church and you’re trying to feel prepared to give a talk, certain people might find it counterproductive to drop their good size 13 black shoe in that pot that got set not quite far enough aside afterwards. Just saying.

A trying-not-to-be-growly, “Dear, would you help me with this hair dryer?”

I laughed, I mean, what can you do, it was just so unexpected. “I was going to dry my hair.” (We got both done, pretty much.)

As we were pulling into the parking lot, Richard happened to say that the best talks he’d ever given were the ones where he’d prepared it and then had just winged it with what it felt like he should say.

Because I was saying I’d written a good talk but it just wasn’t quite…something. It was a perfectly good talk and I didn’t want to admit to myself after all that work and this close to standing up that it felt like I might be disappointed if that’s all I gave.

And in the moment of truth when I was at that podium I did what he’d done and was glad for that conversation. I said I’d prepared what I’d thought I was going to say–and I was chucking it. I set my sheets of paper to the side there.

And then I spoke straight from the heart. I knew a few people there had already heard bits and pieces of this and that but here was the whole of it in one piece.

I mentioned a woman I’d never seen before who was clearly badly struggling with–something that day, and I took a leap and said what turned out to be just the right thing for her.

Someone had seen. And in that moment we were strangers no more and I saw the burden visibly lift from her. I knew no details, just that she had found what she’d needed in that moment. We have to be willing to be present for each other and the smallest interactions matter so much.

I talked of my faults. I said, I was asked to speak on reverence within this Sacrament meeting and yet I’m the disruptive one, I’m the one who gets up and moves away if someone sits down coughing near me. I talked about why. I said, But there is no place for me being grumpy or growly when someone does. None. And I have been, and I apologize for that. We all come here to find peace, not just me.

(It was a no-names public apology to the old woman who’d come in late and coughed on me (again) after having previously given me bronchitis doing so. She’d had no way to truly know what it was like and she had never deserved my grousing–there are better ways to handle things and as you my own blog readers pointed out to me at the time and I thank you for that, she had just as much a right to sit where she wanted to as I did.)

We are here to serve God by loving one another. That only is what we should bring here (or anywhere else). Full stop.

I talked about the first, and then the second big Crohn’s flare, where my immediate reaction to it was, but, but, I don’t need another experience like this to teach me to be a nice person–I think I did a pretty good job of learning a lot the last time around. Do I have to go through this? I don’t want to!

So I prayed.

And the answer to my prayer was this:

All I had was who I was.

Okay. I decided to pray for each person who entered my hospital room after that. I wanted them to feel their work had meaning and they were valued for who they were as well as for what they did. I figured if I could drop that pebble in their ponds the ripples would go outward to countless patients after me, remembering Dr. Rachel Remen’s books in which she said there’s a certain kind of immortality in acts of kindness.

I said to the ward, You can’t pray, really pray for someone without coming to love them.

And thus one Stanford doctor came to confess one day that he’d written in my chart, Patient looks deceptively well. Do not be deceived.

Because you aren’t supposed to be that cheerful when you’re that sick.

I ran into that doctor a few months after I got out of that hospital and I called out his name. He had no idea–and then—-!!! He was ecstatic! “LOOK at you!!! You look GREAT!!!”

Love strengthened life and I was still here.

He had wondered. And now he knew.

And he knew his own caring had made a difference.

Got that out of the way
Wednesday April 15th 2015, 10:13 pm
Filed under: Crohn's flare,Life,Lupus

Me: The scan was fine so I can cancel that appointment, right? (I feel fine. I don’t want to be a patient. I’ve been a patient a lot. Now it’s my turn to just plain be an ordinary person while I can for as long as I can and I’m pretending I never have to do the patient thing again and just let me enjoy my break while I have it, willya.)

The nurse: Um, no, you better go.

The specialist: The scan was not quite so perfectly fine.

And that is how I ended up having a procedure done today that was an inpatient one done under anesthesia back in my mom’s day. I did not know this doctor, but he struck me as being terribly weary of inflicting pain on the innocent. But the thing is what it is. I had no idea what other burdens he might be bearing; my heart went out to him. I wanted badly to comfort him, to tell him it’s his job to do his best to keep us healthy and it’s our job to be grateful for his efforts and skills and caring. It wouldn’t bother him if he didn’t care, it’s a sign he’s a good person. As for my end of things, it would be just one day–or the start of knowing what to cope with, and knowledge itself is power over illness, along with all the love in the world.

I at last got him to laugh when I told him I was going to call my daughter and tell her what I did to celebrate her birthday. He did seem better after that.

And the verdict is (roll the drums, blast the trumpets): no bladder cancer. The Remicade and Humira side-effects haven’t gotten to me yet. And I say (waving my magic wand, making it so) they never will. So there.

And the knitter in me wonders if I should knit him a hat. A warm and soft one.

Fixed in our ways
Sunday February 22nd 2015, 10:11 pm
Filed under: Crohn's flare,Family,Friends,Life,Lupus

Let me say upfront that it’s nearly impossible to rile my husband. He’s calm, steady, seeks for understanding, he’s my rock. So I can’t imagine that he was anything but matter-of-fact in his statement. Me, on the other hand, I think I struggle a little harder at staying charitable when someone hits me right where I live. Literally. Even if we tell them they don’t know, they can’t possibly know, we remind ourselves, only those who live it can.

Although, the doctors and nurses at Stanford Hospital certainly do a good job of it. Good people. Yeah… That, “Oh I remember you!”

Our ward shares its church building with another ward and at the beginning of every year we flip which one has mornings and which the afternoons, whose toddlers get their nap time, who gets to sleep in.

There is an elderly woman in the other ward who–and this is the first year she’s done this–has decided she didn’t want to make that switch so she would just join ours. She probably has her favorite seat that her ward knows all about and she always goes there unless someone beats her to it, and that’s fine. We do too, going for where I’m most likely to hear, assuming no one else is there yet.

Two weeks ago she sat down right behind us (we always get there a little early, she, a little late) and started coughing hard. I apologized but got up and moved as far away as I reasonably could without making a scene (scoot down that bench…) Our ward knows. She had no idea, so we explained after the meeting was over and hoped that was that.

Last week someone beat her there–he was from out of town, visiting his grandkids. Directly behind us, clearly sick, coughing deeply. Given how fast and how hard that same cough would hit me a few days later, I can understand why getting ready for church he’d probably thought it wasn’t much. And I can certainly understand wanting to spend every minute with your grandkids you can (this being why I’ve been wearing face masks to church since Madison was born–I don’t want to be limited in when we can go see ours. But last week I forgot to bring one and there you go.)

The brainstem lupus had me fainting in the shower this morning, saved by the shower chair a dear friend dropped off last night when she heard. The tyranny of the ileostomy is that it does not care that you’re too sick to deal with changing the dressing every third day, you absolutely must and you must do every step right because one four-month staph infection is enough.

Hopefully all of this will be very short-term. I prefer my Crohn’s flares being in the past tense–and for the most part, they are, this is nothing compared to those two big ones: when my life was saved by an experimental med, when my life was saved by major surgery.

Michelle’s idea is that we should ask permission to place a box of face masks at the entryway for all who might need one to help themselves to. I think I should have one and a spare in my purse as it is.

Richard went off to church this morning. That same elderly lady sat down behind him after he got there.

And again she was coughing. A lot. While asking after me.

A short and sweet, “My wife is very ill. Someone was coughing right behind her last week.”

We bought plane tickets before all this started to go see our grandkids and to celebrate a birthday. Assuming we’re healthy.


P.S. Rereading this I’m thinking, can you tell I’m ready to be done with this? And remembering the nurse I once apologized to at Stanford who comforted me with, and I’ll never forget the kindness of her words, “It’s okay to be grumpy: when our patients feel well enough to be grumpy it means they’re getting better and they want to go home.”

A day at a time
Saturday February 21st 2015, 12:02 am
Filed under: Crohn's flare,Family,Life

Last night Richard took care of the mango tree for me.

Tonight I turned the warming lights on and covered it over myself, claiming a little bit of normal life even though I’m far from feeling it–but it’s proof that today was better than yesterday. By far.

Still needing anti-nausea meds, though–the Crohn’s has been announcing itself along with the flu. Hopefully it will all settle down when the germs are over.

Stanford earns top billing
Wednesday December 10th 2014, 11:30 pm
Filed under: Crohn's flare,Life,Lupus,Politics

Got some bad guys and some good guys for you today.

Back in September, when I caught the flu with all the autoimmune flaring that went with, I was barfing nonstop from the Crohn’s. The lupus was going nuts, too, my blood pressure was tanking, and I needed IV fluids, fast, just to start. (There would be chest and abdominal x-rays too.)

There were a lot of other people around with early-season flu, too, but for whatever the reason, when we called my doctor her nurse emphatically told my husband not to take me to Urgent Care but rather straight to the ER.

This was not a decision made by us. She insisted. She said if we went to Urgent Care they would simply send us over to Stanford, and we knew what the co-pays on the ambulance they would insist on would be, not to mention it would tie up that ambulance unnecessarily.

Turns out Anthem Blue Cross requires in their fine print that you verify with each health care provider before seeing them each time that they are still in contract with Anthem. Doesn’t matter if they were in-network for all the years you’ve had a policy with them, they reserved the right to yank that at any time. Doesn’t matter if you’re in an emergency with no capability of sitting on hold on the phone for two hours. Etc.

Now, by the contract we’d signed at open enrollment, if you go out-of-network in an emergency they’re still supposed to pay such a percentage and even though it’s less, it’s still a substantial amount.

Anthem and Stanford were in a contract dispute. Anthem never notified us in any way, not so much as an email, nor by their terms do they have to, and our trip to that ER was a life-and-death emergency with my already-very-low blood pressure. As far as I’ve been able to tell since, that day we had and we still have no in-contract hospital to divert to, either; I could be wrong on that but Anthem certainly hasn’t offered us any information to the contrary.

So we are paying for insurance to cover things they will not cover despite selling us a policy on the grounds that they would. I’d call that fraud, myself.

So, out of network, painful, but I thought we’d be out about a grand. Someone on the phone at one point said three. Ouch. But we waited for a bill. And waited. And waited, while the two sides hashed it out.

We got a notice finally last week from Anthem, and a day or two later a letter from Stanford.

And this is what Anthem said:



Except this one unclear thing here that was probably that IV and only that IV, or maybe one individual doctor they were not in dispute with. But whatever, so, one thousand paid towards the claim and that was all it was going to be. “Your responsibility”:

Twelve thousand nine hundred ninety-nine dollars.


Hello? Out of network percentages, at least? How can they…?!

They don’t care.

Then came a letter from Stanford Hospital.

And they said, It is not your fault that we and Anthem Blue Cross are currently out of contract, and your health is more important. We don’t want you to be afraid to get medical care when you need it.

They said they will only charge us what our co-pays would have been had everything been as we expected when we went in there, as if all prior contracts had been in full force.

Multiply that times the whatever number of patients, given that Anthem covers something like a third of all the people in California, and what their bills could be and that Anthem should legitimately be covering and refuses to… Staggering. Just staggering.

I just felt (and these words look so faint on the page compared to how I feel) that Stanford deserves my praise and my thanks as loudly and as publicly as I can offer them.

And don’t forget the triple-ginger snaps
Monday October 13th 2014, 9:32 pm
Filed under: Crohn's flare,Family,Life,Lupus

My doctor told me to get my flu shot as soon as I, in her words, wasn’t very sick.

And so Richard was going to leave work early and get me to the clinic before their flu-shot nurse called it a day at 5:00. I just wasn’t up to running lots of errands on my own yet.

The lights were not with us. We got there 5:02, no dice. Oh well.

It was a moment of truth: I just really, really didn’t want to have to worry about going through the last two weeks all over again if I could do anything about it–I wanted that shot done with. (He’d already gotten his.) And so we drove across town to Costco.

Pro tip: that was the fewest people I have seen in that store in ages, 5:25 must be the right time to go.

Not to mention the fewest infectious agents around us and for me to be around them.

There were questions to check off: are you currently sick? I simply left that one blank and they did not call me on it. Do you have any immune disease such as AIDS or cancer? Uh, yes no no–so, yes.

They made me wait 15 minutes while they shuffled paperwork. I had not brought my knitting, deliberately: my hands needed a break after major baby blanket time, but I’d forgotten my book, too. It is a sign of how quickly I’d run out of steam that I forgot that I could simply read the news on my phone.

I sat on their bench that faced a towering display of Men’s L/XL incontinence help (charming), noting the heavy towers of pallets to right and left, the emergency exit door thataway, and plotting my duck-and-cover should the quake strike. I’ve been under swinging chandeliers before, but at least they were anchored to the ceiling. Get away from those aisles. (The bored mind in earthquake country.)

And then they called me into a back room and the deed was done. I cannot begin to tell you what a relief it is that that is so. I have my flu shot. The world is a slightly safer place.

Tomato escape
Tuesday October 07th 2014, 9:17 pm
Filed under: Crohn's flare,Garden,Life

Last night was the first night I slept since this started, just a few coughing spells. Today was the first day I was able to eat without having to use anti-nausea meds to make it possible. That’s real progress.

And I wound up the next ball of purple yarn for my project. I almost did it last night but thought, do you want to blow all your energy standing winding for twenty minutes and then be worse tomorrow because you’re already that tired, or do you want to wait till it’s easier so it gets done *and* you still feel well? I waited and today it was no problem. Wow what a difference.

Getting tomatoes out of those boxy cages is a real pain–and the guy who comes twice a month to do some of the outside yardwork that I can’t saw me coughing just before I headed back to bed to read awhile, not talking to him because I didn’t want to share the germs. Richard was working from home: another sign I was sick. The guy saw that things hadn’t been weeded for at least a week and there were now tomato branches growing through and blooming well outside the bird netting.

He got that one ripe heirloom tomato out of there for me and put it where we couldn’t miss seeing it the next time we looked out the window. Nobody had asked him to. He just did it. I got up soon after he and his partner working next door left, too late to say thank you or even to be sure which one of them had done it.

Looking forward to tomorrow. I like this getting-better stuff.

Sunday October 05th 2014, 9:18 pm
Filed under: Crohn's flare,Friends,Knit

I snoozed through most of the first session. I tried.

I was feeling much better during the afternoon one and knitted through most of it–except for a few minutes there when the phone rang, checking first, and then the doorbell did. Glenn!

He was here for a business conference. He moved to New York City a few years ago and he wanted to stop by and say hi while he could. I waved through the window while Richard went outside to chat and to meet Glenn’s girlfriend; there was no way I was going to expose them to my germs. Sometimes it’s just not the day.

But at the end we did open the door between us, and standing well away from each other exchanged at least some actual greetings before they left.

And I…have run out of purple Malabrigo that’s wound up. I need to get up the oomph to wind the next ball tomorrow; today there was just no way.

Tomorrow I need to make the call to my GI doctor like the ER doctor had wanted me to do. This morning was worse, not better, and she made it clear that, even if I didn’t want to hear it, she thought the Crohn’s symptoms were actually caused by, y’know, my having Crohn’s. Flu does that.

Or maybe it will all clear up together. I’m hoping.

Saturday October 04th 2014, 10:02 pm
Filed under: Crohn's flare,Family,Food,Friends,Knitting a Gift

So, today.

My oldest got hit by a taxi. She assures us no serious injuries, but yow. I’m grateful it wasn’t worse–while fighting my mama bear instinct to want to scream at the guy, What did you think you were DOING!!!

Ahem. And. At noon, Michelle showed up bearing hot chocolate from the shop where we’ve been meeting up with her and her cousin many a Saturday morning, wanting to make sure that, flu or no, we didn’t miss out. I couldn’t drink much but what I did was great and the rest is in the fridge in happy anticipation.

And. The doorbell rang, 5ish. A friend from church bearing dinner, and she had absolutely no way to know I’d been craving pasta and cheese and Italian sausage and a good substantial sauce all day. No way. I hadn’t even said it to Richard. And yet–there it was in her hands: a very good ravioli, lots of sauce that appeared to be homemade (I very much want the recipe) and with a lot of Italian sausage in it, and I could not have imagined up better than what we were offered. Susan! We both had seconds, and for me this week that’s really saying something. Happy us, there were leftovers.

Carrot cupcakes, cut-up watermelon, multi-seed-and-grain bread (that last would have to be for Richard.) She took the time to make that and bring that while arranging her 98-year-old mother’s funeral and affairs and I’m just kind of blown away.


I knitted. Not a lot, two 45-minute segments where I was going v e r y slowly but making noticeable progress on the interminable purple cousin scarf. (Yes it’s still going on.)

Because today was the first of two days of the General Conference of the Church of Jesus Christ of Latter-Day Saints, two two-hour sessions two hours apart and tomorrow likewise at 9 and 1 our time, and knitting during Conference has always just been a given, and Conference projects always have their own bit of meaning (even if that meaning more than once has been, while I was doing it, finally something that sat me down in my seat long enough to finish this!)

I listen and get my priorities back in gear and feel spiritually charged up while at the same time, and peripherally to it all, create things to make someone out there happy. ‘Oh, I made this one during Conference’ makes it a happy thing indeed.

I think Sunday afternoon we shall have a purple scarf at last and the beginnings of the hat to match. See? That’s the other thing Conference offers: an abiding sense of hope again.

I even started to forgive the taxi driver. I still hope he got caught, if only so he won’t repeat the errors of his ways.

Uh, yeah, so, I’m still working on that one. Good thing there will be more knitting time  spent listening to wise and loving older people telling their stories and of their trusting God’s love come Sunday.

Star works
Thursday May 08th 2014, 7:33 pm
Filed under: Crohn's flare,Friends,Knit,Life

Bought a house as young parents, watched our kids grow up and our friends’ kids grow up. One family moved away eleven years ago but their boys stayed best friends with Keith of just-over-thataway; we visited them a few years ago in their not so new anymore place up in the Rocky Mountains–the one where we saw the herd of elk doing the fishy dance as we came back down from there.

They left California about the time I was in the hospital the first time and their youngest daughter took the time out of packing to make me a paper crane. I have it right over there.

The mom can make costumes like I can knit–and she thinks it’s simple and easy to do, too, to which I guffaw, and then think oh. right. in the direction of people who think that what I do is hard. So. One notable Halloween party when our kids were young, she and her family showed up with all of them done up as  Star Wars characters: the oldest girl had the dark hair and braids to totally pull off the Princess Leia look, the dad was Obi-Wan Kanobe, etc, and everybody else just kind of stopped right there and gaped when they saw them–WOW! So much detail, so much work (so much not a chance that you could talk her into letting you pay her to make anything like that for you or your family, too–requests that will sound familiar to knitters everywhere.)

And now three of their kids are in a video, and their sons’ best friend Keith–oh, wait, didn’t I ever blog about Keith? About going to church in Ft Worth when we were visiting my in-laws, and when the meeting ended we stood up at one end of the chapel and Keith stood up at the other end of the chapel and he and I both stood there frozen in disbelief, jaws hanging quite open: what are YOU doing here!

Small world!

So now he lives near where they do, and Keith has the Obi-Wan role. Etc. This video went past my Facebook feed again and again yesterday and I finally clicked today after my daughter said something.

Ohmygosh. It IS them! The maker of my crane is the female star. Her sister does a cameo. Their mom’s costumes rise again.

One of the great things about getting older is watching the world shrink before your very eyes.

PRE board
Monday April 07th 2014, 10:42 pm
Filed under: Crohn's flare,Family,Life

The promised story.

We set out for the airport in time to get there before the one-hour pre-flight requirement; thought about trying for earlier but at dark o’clock like that we just couldn’t make ourselves enthused enough.

There’ve been a lot of changes to the place and we don’t often leave a car there (like, once, I think). We missed the exit to the right parking lot and had to circle back around (twice!), waiting at one point for a large team of athletes to cross in front of us who were going to be on our flight.

Which was much cheaper than the more-reasonable-hours ones and the airport was surprisingly a zoo–and our gate far away, with pleas there over the loudspeaker for someone to volunteer to be bumped. $150 towards future flights plus a refund on the ticket for waiting for an hour? Hey. Had Richard been there I might well have taken the offer. If they would do it for two.

My ticket, unbeknownst to me when we arrived, had randomly been stamped TSA PRE. I had no idea what that meant. The security person working her way from the back of the line forward did, though, and I got hustled over to a roped-off line with all of three other people, told not to take off my shoes nor take out my laptop (which was home with a bad battery) and to just go. And no he could not come with me. Express service through the screening and out of there.

In front of Richard in the large crowd was a couple that hadn’t known they had to buy a ticket for their infant, too, and “They were in a world of hurt,” he told me later. Basically, he got stuck in security-line delays while I was already being called onto the plane–and we never cut it close like that. But it happened.

I boarded. I pulled out my knitting to add a layer of calm to the inwardly-loud prayer going out there and watched. A few late stragglers came dashing up but still no Richard.

Then there was no one. I told the stewardess my husband was back there somewhere and she worried a little too and took the edge off it for me simply by caring.

He was the last one on and they shut the door after him but he made it. Phew.

Someone must have asked after all if they could have two vouchers: because there was one single empty seat on that whole plane and we had it. I had told people asking to sit in my row that they’d be next to my 6’8″er and they shook their heads no and passed right on down the aisle. He had room to stretch out in.

We made it.


And on a different and far more important note: there are those here who will remember when Caremark refused to send my Humira prescription five years ago while I was fighting for my life with a Crohn’s flare, with a clerk saying on the phone that they didn’t know if they wanted to be responsible for selling me such a dangerous (FDA-approved!) med, and that it took five days and you all storming the gates by phone and by email for them to come through. I am eternally grateful to you all, and your support is part of why I am still here. (We loved the, We don’t know WHO you are, but WOW! as they approved it.)

So this hit close to home. I was very happy to sign the petition asking Caremark to honor the prescription that has already shrunk a young dad’s tumors and is his last chance but that they are denying him. Life as a very clear long-term possibility and even likelihood, while they are consigning him to certain death. They should be better than that. If you all would be so inclined as to join me, I’d be much obliged. Thank you.

State of the Union
Wednesday January 29th 2014, 12:02 am
Filed under: Crohn's flare,Knit,Politics

Thank you, everybody, I appreciate it; today was a relief after yesterday. I was pretty discouraged there.

Interesting political theater, meantime: watching Congresspeople before the State of the Union address.

One guy, clearly aware there was a camera pointed their way, was smiling quite jovially as Ted Cruz talked to him. Cruz, even seen mostly from the back, clearly was getting more and more intense, jabbing a finger hard in the air, lecturing, the camera lingering to capture the moment while the other guy (dunno who he was) was being easygoing in response.

John McCain was just in front of the two of them and smiling in bemusement at the harangue going on behind him and lifting but not quiiiite entirely rolling his eyes but oh so close as to call it. Then they all sat down for the address and as the camera panned back their way my impression that that had to have been Cruz was confirmed.

I didn’t knit as the President spoke because I was at that indecisive what-to-start-next stage and besides, I didn’t want to miss a word. This was the proverbial and actual Leader of the Free World and I wanted to hear what he had to say.

President Obama laid out the challenges before us, invited Congress to help him meet those challenges and then, acknowledging reality, laid out what he personally was going to do to move us forward. He basically asked them to work together, take the credit for it and run with it.

When my uncle was a freshman in the Senate, there was no one law and in many states, anybody–anybody–could access your medical records for the asking *except you*.  You were legally barred. My uncle’s proposal was for a Federal law saying that other than in specific psychiatric cases where there is clear cause to shield the record, all patients should be allowed to access their own and others would need to meet a standard to do so.

The members of his party were quite upset. This would be a Federal law on something the states should regulate. States’ rights!

Uncle Bob responded by saying Senator (I don’t remember who but a ranking Democrat) is against it.

Oh well in THAT case! And his fellow Republicans rallied behind it.

Then-President Clinton ran with it and took credit for it when he signed it and that’s fine, presidents always do get the blame and the credit, the point was to get it done. Probably nobody outside the family associates my uncle’s name with that law. He doesn’t mind a bit. It needed to happen.

Given today’s political realities, I think any member of Congress willing to buck the trend of intransigence and (just) do their (bleeping) jobs would get quite a bit of personal and political credit from a grateful country.

(I started a Malabrigo Mecha hat during the rebuttals. An easy decision.)

This is what happens when I catch a cold
Monday January 27th 2014, 10:41 pm
Filed under: Crohn's flare,Lupus

Woken up by sharp chest pain at 3 am. More but less intense several other times later in the morning.The cardiologist told me it didn’t go on long enough for it to be my heart–and a phone call was as close as I was able to get to actually seeing him. Just more lupus hit’n’run stuff no biggy.

The Crohn’s, it snarls.

He told me to go see my family practitioner and I said okay and with that good intention took my fever straight back to bed for most of the day. But I did, at one point, quite deliberately get up and order that last cone of aqua dk silk from Colourmart, a color I like but had not tried yet. Just to make a declaration to myself and to look forward to knitting it. This is just a blip.

Our beloved Don Meyer
Thursday January 23rd 2014, 10:01 pm
Filed under: Crohn's flare,Friends,Life

Yesterday was such a sudden and steep dive downwards healthwise that it threw me; there’s always this fear of the Next Big Flare, which might not be treatable the next time, and I was living it. Michelle texted me every 15 minutes: drink! Two sips! She got me through the day.

And then I woke up this morning and I did not barf. My belly ached, but it wasn’t childbirthy now.  I managed eventually to eat something. It helped, and hope breathed a grateful relief. Thank you all for your prayers and for Thinking Good Thoughts.

And then I got up, I could actually get up! and I read my emails.

Don is gone. Home to be with his beloved Amalie again, five years after losing her. But–Don is gone from us.

Our elderly friend ran into me at the grocery store shortly after she passed, fifteen years after I’d last seen him. Their son Cliff had not yet moved back in to take care of him and Don was alone. I gave him my blog address, he became a regular here, and I encouraged him to start his own blog and some of you kept him in good company with your comments and caring, and I will forever be grateful for that.

He passed two days after coming home from the hospital, and the day in between, I called to see how he was doing. Cliff told him who was on the phone and asked if he was up to speaking with me, and Don didn’t hear; “Who?”

I heard that one word and I heard the effort that went into saying it and knew in my bones it was the last thing I would hear from him. It was. Cliff apologized, but I have been at that edge where simply breathing is all you can do–but I had Crohn’s, not cancer.

Goodbye, dear friend, and the rest of you? We’re all going to have to step up on the bad puns to wish him well on his way forward. I’m, I’m, just not coming up with any quite yet. I’m sure I’ll make up for it later.

Boom, just like that
Wednesday January 22nd 2014, 10:04 pm
Filed under: Crohn's flare

A fever last night, the Crohn’s flaring today. It’s brutal. This is the first time I’ve been able to sit up all day. Okay, that’s it, done for now. Hopefully tomorrow will be much better.