Life is good with happy gorillas, not so much with evil clowns under your bed.

Tuesday, June 12, 2012

what you don't see in the Enbrel ads

Day 2 in the hospital, thankfully not in ICU this time. Everyone else in the house got a sinus infection, I got that, 5 days of fevers, heart attack potassium levels, heart rate of 150 and blood pressure of 90/50. As wonderful as biologics are for my joints, I can't continue like this. I miss my kids and my husband misses me, and work. I am hoping to get out tomorrow, with a boatload of antibiotics. I am hot and sweating, roommate is freezing. Hate the hospital.

Saturday, June 2, 2012

Sometimes I'm just "Chronic"

I hate that I told myself that I MUST stay positive and find humor in my medical struggles. Right now, I HATE rheumatoid arthritis (see that, didn't even give it the proper capitalization.....take THAT ya stupid rotten disease) and I HATE chronic kidney stones and infections. You two rotten diseases just suck.

You keep hurting me and hurting me and hurting me and I just keep on going, ignoring you, and working around you as best I can.

I try to beat you at your own game, I make jokes about it, I laugh and smile and I don't let you keep me from doing most of the things I want to do.

But the fact of the matter is that you've already won, because there is no way that I can strike back. There is no way I can hurt you. You've already won, because no matter how hard I try, no matter how hard my doctors try, we can't stop you. So no matter how well I am doing, you are still doing your victory dance in my organs and in my joints.

We can't stop you.

You've already won.

So now really all my life is about how I handle defeat. Normally I'm doing my best to stay positive, to laugh and joke and enjoy the world.

But some nights I sit here and the enormity of it hits me.

And I break down.

I cry. I cry until my face stings. I run my hands through my hair, and throw away the handfuls of hair that I'm losing thanks to the drugs that are keeping you down. Then I cry more, maybe sob into my pillow a bit.

The enormity of what I HAVE lost hits me, and I let it take over for a bit.

Tomorrow I'll be back to my usual self. But tonight I will cry, I'll let RA and LPHS think they've broken my spirit. I'm human, not super-human, after all. Tomorrow will be good. Tomorrow I'm going to Target with all three kids.....yeah, I guarantee there will be Facebook Fodder by noon EST.

So this is your night, RA and LPHS....enjoy.....

Friday, May 18, 2012

are you kidding me?

So last Tuesday I woke up with a 102 degree fever. I was icky sick for two days, but by Friday I was on the mend. I normally take my Enbrel and methotrexate injections on Fridays. With my journey to meet Jesus (also known as septic shock) still fresh in my mind, I decided to hold off a few more days to give my body time to get well before I kill off my immune system.

I started having hip and knee pain Monday. By Tuesday feet, elbow and hands were added. On Wednesday my lower back began to hurt. Then I woke up on Thursday morning with pain in my ears. Within hours my jaw started to ache. I took the meds.

If the disease won't kill me, the treatment just might. I was telling my super awesome husband about my funeral, my wants and don't wants. First off, the casket must be open. But I don't want to lay there is some uncomfortable dress, all stiff and "resting". Oh Hell no! First off, I want my eyes open, wide. And heavy on the eye makeup, like I normally do. I want to be in a comfy t-shirt and no bra, unless the girls have re-sagged, at which point I will concede to a bra. And sweatpants, nice ones. Let us not forget socks, my feet get cold easily now. NO SHOES, they are uncomfortable as hell, and I won't be doing much walking. Funny, isn't it, that I love love love shoe shopping (oh Imelda Marcos, to have your collection.....) but I hate to wear them.

Now the most important thing about my corpse: eyes must be wide open, with a look of abject terror on my face. Then I want my hands positioned up and out in front of me, bent at the elbows as if I were throwing my arms up to protect myself from, say, a collision with a baseball or windshield.

When I was done explaining how I wanted my body to be displayed George decided he could not handle knowing the rest of my funeral wishes. Too bad, I was hoping to book some stand up comedians, some trained dogs and monkeys, and I want my casket to be driven to the cemetary in a clown car.

In other words, I want people to have a party and celebrate my odd and twisted life, not mourn my passing.

It must be really hard living with me.

Sunday, April 8, 2012

An Addition to our Household

He is so small, I almost didn't see him. But now he has grown a bit more and I can see him, not just feel him, I feel confident to share my news with the interwebs. "He" is Noddy, my very first rheumatoid nodule.

Noddy lives on my "bird" finger, the joint in the middle. I don't know the medical term for that joint, meta-carpa-phlangeal-somethingorother, I don't know. All I know is he is everything I had hoped for in a rheumatoid nodule. Now when I show him off, I can innocently flip the bird to anyone without repercussions. Heh Heh Heh, now THAT is convenient.

He doesn't hurt, most nodules don't. Sadly, some day Noddy will turn on me. He will deform my joints until my fingers are useless. Hopefully I can get back on medications soon, and stop him from growing.

Welcome to the family Noddy!

Saturday, March 31, 2012

It has been a long time since I have had a bad kidney day. Usually it is the burning ache in my joints. But today is one. On the transplant side no less, so I wonder if the stone in there is trying to pass. Normally the pain in my joints burns constantly. You just can't get away from it. You can dull it with meds, but it never goes away. You learn to live with it. You know just how much movement you can do before you will pay for it the next day. In a strange way, you welcome it, like an old friend. You know that you are indeed still alive and kicking, because you feel your joints before you are fully awake. If you roll the wrong way, or stay in one position too long, you wake up with the pain. Hey, I didn't die in my sleep, win!

The kidney pain is different today. I just could not sit and work, plus Ian woke up at 6am, and didn't stop going, so I was up. I napped at 10, and decided to join the living. I started to look for the owner's manual for our TV, as George found a wall mount for it. Never did find it, But what I did do was clear out 75% of the office, clean it, walls and floors, and rearrange it neatly. So much more room now!! I feel better. I still have a pile of crap along one wall, 5 years o Katie's school stuff, 3 years of Linus' and 3 years of Early Intervention for Ian. In other words, a paperwork snowstorm. oh well. I feel that I actually did something, in spite of being in wicked pain. The strange thing about me, and perhaps this is true for other people as well, but when I do take my narcotic pain medication, I get a huge burst of energy when it kicks in. I suspect this has a lot to do with the clean office today.

The sad thing is that I did all this, and am feeling worse than I did before I started, because my friend RA decided that it didn't want to be left out. I ache everywhere. I really do think it is the stone in that kidney trying to move, because I break down in tears when I whizz, the pain is that intense, but thankfully short-lived. So I have to miss my neighbor's Pampered Chef party. I'm so glad that I married a guy who happens to totally dig gadgets, and really likes Tortured Chef gadgets. So I'm sending him over after the party with a list and a blank check.

Spring Break has begun. My big ones are out of school for a week and my baby starts his very first day of pre-school on Monday. I am excited, but I bet his big sister will be bawling her eyes out. She dotes on him so, clucks over him like a mother hen. I am very lucky that my kids get along for the most part, I hope it stays that way. Even on a very bad day, I'm still blessed. This isn't how I had hoped my life would be, but if I the opportunity to trade any of it to be free of this pain, I wouldn't change a thing.

Sunday, March 11, 2012

Back from the Brink

On the Enbrel packaging, website and commercials:

ENBREL can lower the ability of your immune system to fight infections. Some people have serious infections while taking ENBREL. These infections include tuberculosis (TB), and infections caused by viruses, fungi or bacteria that spread throughout their body. Some people have died from these infections.

They aren't kidding.

One minute I was driving to McDonalds after picking up a prescription. The next I'm at home calling my husband to come home, I was ill. It hit me in a matter of minutes. I was so weak I could barely make it up the stairs, and I have very few memories of that day, Thursday, March 1, 2012. I remember waking up around 4am, having slept for 16 hours. I took some meds, drank some ice water and crawled back into bed. I woke up the next morning, feeling a bit better, slid downstairs to see my husband taking care of everyone, getting them fed and off to school. It was as if I was watching the whole scene over my shoulder.

The sitter arrived and we left for my rheumatologist appointment that had been scheduled several days before, to address the flare that would not stop in my jaw and c-spine. By the time we got across town, I was fairly short of breath, every deep breath hurt across my chest, so I found myself breathing rather shallow.

Saw the PA, she ordered a neck xray, not seeing anything but that I was holding my neck very straight, and she prescribed me flexaril to relax the muscles. My temp was 103.9 and my blood pressure was low, she suggested we go to my primary care doctor. G called and got me in 45 minutes later. We drove back across town.

I skittered inside, by this time I felt like roadkill clinging to the truck tire of life. The nurse took my blood pressure twice, as if she didn't believe the results, 90/40. My heart rate was 150. The doctor came in with a pulse oximeter and verified my heart rate was bouncing between 150 and 160 and my oxygen saturation on room air was the low 90s. "She needs to go to the hospital, now" He offered to call a squad, or we could just go in and he would call ahead so they knew to check me out. We chose to drive the 3 blocks. My doctor would not let me walk out, he personally put me in a wheelchair and wheeled me out to the car.

The ER had about a 4 hour wait, but anything heart related will get you an immediate EKG. If there is nothing then you go out to wait. This time they did the EKG and suddenly I'm being raced to a room. Overhead I hear "Cardiac team to ER 44 STAT" as I'm being wheeled into room 44. Oxygen was placed on me and nurses worked furiously to get an IV in me. My automated blood pressure cuff went off, I heard someone say 70 over 30 and then a nurse placed two big rectangular patches across my chest, she murmured something and I heard "just in case". I later found out that those patches are used when someone goes into cardiac arrest and they have to shock you, it is where they place the paddles.

A doctor told me that they thought there was an infection in the lining around my heart. There were so many people in the room, the ER attending physician had this panicked look on his face. G said there were three times as many people outside the room as there were inside. Eventually someone found a vein and they started massive fluid infusions, trying to get my blood pressure up. During this time, I kept drifting in and out of conciousness. When I would close my eyes, someone would poke me really hard to get a response from me. I remember them wheeling me to the ICU by that time I was so weak I could not even lift my arms without great effort.

The doctor placed a central line in my neck, I had no concious sedation, but I don't remember that, except for when he stitched it in. At some point he also placed a line in my femoral artery. I have no memory of this, and didn't even know I had it until that evening.

They ruled out cardiac issues that night, and confirmed I had sepsis and had gone into septic shock. Basically, with all my kids having strep throat, I probably got strep from them. Instead of getting a sore throat and feeling crappy for a few days, the bacteria set up shop and colonized in my sinuses for a period of time, then spread to my bloodstream. By the time I got to the ER, my organs were beginning to shut down. This is a Bad Thing.

I did bounce back quickly and was home by Monday afternoon. However, here we are 3 weeks later and I'm still not totally 100%. I tire easily and can't barely pick up Ian, have nearly dropped him a few times. To be fair, though, the kid is a solid mass of squirming toddler, not very many people can pick him up easily.

I can't imagine how life will change for my family if I were gone. I'm very fortunate that I got to the ER when I did, or things would have been much, much different.

Tuesday, February 28, 2012

Where does the time go?

And before you realize it, an entire week has gone by without a post. For the three people who hang on my every word, I'm so glad that Facebook has kept you up to date!

I am calling my Rheumy back tomorrow. I didn't want to bother her, again, and when everything finally settled down, except the two most painful joints ever, I just didn't want to call and whine again. But my daughter's pediatrician had some words for me today....."if we doctors wanted 9-5 jobs that never caused us any extra thought, we wouldn't have stayed in school while our friends were out having lives." Today is my doctor's day off, I will call tomorrow.

I've been upping my prednisone, to keep the inflammation down, but it isn't working. I'm taking NSAIDS, even though I'm not supposed to, because they are the only things that come close to giving me some relief. The pain in my TMJ (the joint where your jaw attaches to your skull) is unrelenting, it extends into my ears, and feels as though I have ice picks jammed into either side of my head. When I move my jaw, I get pain. The more I move my jaw, the more pain happens and the longer it lasts. Chewing, talking, smiling, laughing, swallowing, all those things you don't even think about until suddenly it hurts you. I had to have my left TMJ repaired in 1998 due to a fall. It was miserable until they fixed it. I had been given muscle relaxers, and still had some. So for the last few days I've taken those, yes 14 year old medicine, it is either inert or omnipotent, but it did help quite a bit at night, so that I could sleep. Even when taking Lunesta, the pain would wake me up, and keep me up. But again, not wanting to bother my doctor after already calling her and getting yet another plan of action that wasn't working, I just soldiered on.

That is the irritating and annoying flare. This is the concerning one: The base of my skull. Another area that RA can do some damage is in the cervical spine, specifically the C1 and C2 vertebrae. One of the first signs that something is wrong is pain. Like a headache you've never had before, one that leaves you in tears. It feels like a giant spear is bashing your brain, like your head is on a pike. "Vlad the Impaler" was all I could think of this weekend. It seemed to get better over the weekend, but then returned yesterday with a vengeance. I still have mostly normal range of motion, but it is painful when I move my head from side to side. Then today I kept getting this tingly, almost pins and needles like feeling in my arms and hands, and then every so often my hands would go numb. Dr. Google says that this is a Bad Thing. That perhaps a nerve or two could be getting pinched. So I will call my Doctor and bug her in the morning.

So what I have to deal with daily is pain. Some days I have to add in diminished mobility and difficulty in doing certain tasks, but always the pain. Sadly, you get so used to it, that after a while you forget what it is like to not be in pain. It becomes just part of your life and you take the pills they give you to keep it manageable and you do the best you can to be as normal as you can for your kids and your spouse and the poor souls that happen to talk to you from time to time. These two new places where I am having flares are making life more difficult right now. The pain is new to me, so it is harder to ignore. It brings me to tears more than I want to admit. But I know that soon enough, I will be used to it, and it will become another part of my life that I deal with.

You know what? I'm okay. This isn't terminal. I'm not enduring rounds and rounds of chemo and/or radiation. I know that I will most likely wake up tomorrow, and for thousands of tomorrows after that. God has a plan for me, and for my family. We don't know what that plan is, but somehow, this is part of it. I'm just forever grateful that it is happening to me, and not my children. Right now the baby is just getting over a week of being pukey sick, and his big sister now has strep throat, which I will most likely also get, because all the medicines I am on to try and control this disease suppress my immune system. Oh well, what is a sore throat thrown into it all?

So that has been the last week, lots and lots of pain, throw in the end of basketball season and a few all nighters with the baby and woo hoo, just like every week before it. We are rolling ahead into March, the birthday month. All three kids, one month, with high expectations, I'm sure. We call it Christmas II. Funny how the kids never make a big deal about OUR birthdays, which are 5 days apart in October. Hmmmmmm, I wonder why that is?

Tomorrow will be a better day, starting with the call to the doctor "ummm, I don't mean to be a pest, but, well, we still haven't whacked that mole......."

Tuesday, February 21, 2012


Sick kids. I don't mind it when the bigger ones get sick, they can tell me and dash for the bathroom. If they don't make it, well, the floors are not carpeted so it's all good. But the baby, oh the baby! First of all, he only gets sick between the hours of 11pm and 7am. And then it is always, ALWAYS, in his bed, my bed or on the couch made of fabric instead of leather. And he never falls back asleep until 2 hours later.

Two nights in a row, although last night my wonderful husband took a couple of hours at the helm so I could get some sleep. All in all I got about 4 hours total for the night.

It wouldn't be so bad if this stupid RA flare would just settle down. Or settle into an easy to deal with spot, like my hands or elbows or knees. But no, as I felt the pain leave my wrists and hands, as my dexterity rose and I was able to do things like type with ease and speed, I noticed my jaw becoming sore, and swelling a bit.

That was Saturday. Fast forward to today, Ian's Early Intervention specialist arrived and asked me what happened to my face, it was so swollen. I hate this joint the most. Hate the flares that happen in the jaw, because my ears hurt like I have an infection and it is never just the jaw, it is always the jaw AND the vertebrae at the base of my skull. Nothing totally gets to this pain. Heat helps. Sleeping is tenuous at best and this would be when I would take advantage of Lunesta, except that my baby is sick, and I need to be able to care for him. Lunesta is so wonderful, it provides for a deep, recuperative and refreshing sleep. unless you are awakened every 30 minutes or so. Then you wake up groggy and ass dragging for the next day.

So baby Ian, big sister Katie and I have slugged around the house today, having accomplished zilch. I'm going to start working soon, I hope. Ian still won't eat anything, but at least I tried, he did eat a few Pringles.

So how do I spin this to find the positive? Hmmm, well, at least I am able to slug around with my sick kids. That is positive. And, well, I am still able to breathe, THAT is positive. I still have some homemade hot and sour soup, and husband is doing the parent-teacher conference solo tonight. That is positive. Hey, I'm not dead, THAT is a definite plus. I'm not some poor Russian woman who is addicted to krokodil with my green skin literally rotting off my bones (somehow got onto that today, been reading horror stories), so I got that going for me. Yeah, things could be a lot worse than having a painful, puffy swollen face and two sick kids, one of which only pukes on porous surfaces. A LOT worse.

So once this stops beating me upside the head, who wants to take bets on the next joint it will target in the giant whack-a-mole game that has become my body? Winner gets, um.... a bag full of giant Valentine's Smarties and a 5 Hour Energy drink.

Thursday, February 16, 2012

Murphy Owned Today

Ho. Lee. Cow.

Had an appointment at 9 on the other side of town for a research study involving people with RA. I felt pretty good, I thought. Got up, started waking up bodies, hopped into the shower. Then rushed around like a madwoman to get everyone ready and on the bus in the pouring rain. With much coaxing and yelling "I cannot take anyone to school today, get out there and wait for that damn bus!" I got the three older ones on their buses and was finishing up breakfast when there was a knock at the door. I thought it was the sitter but it was the neighbor. "The buses are coming back, there is no power at North, South or Central." AAAAAAUUUUGGGGHHHHH!!!!!!!!!!!!!

So I spent time making calls and texting parents then I drove my husband to work since his car was so horribly broken that it required another day to get fixed. Did I mention it was pouring down rain? When that happens in Central Ohio, everyone thinks the roads are covered with ice, or perhaps glue, because traffic slows to a crawl. Stop. Go. Stop. Go. Stop. Stop. Stop. Stop. Crawl.

I did make it to my appointment, only 5 minutes late. I answered a bunch of questions, verified that I could, in fact, read and write, then was taken to see a rheumatologist who would do a standard joint check. I said I was feeling really good today, which was great, explained my 4 week flare from hell, but that I was all better. Then he started checking joints. Ow. Ow. Ow. oooo, yeah that one hurts too. Ow. Ow. Ow. Suddenly I wasn't feeling so confident and good. He got to my knees. "Whoa, you've got some osteoarthritis going on here, don't you?" Then he muttered "geez, your kneecap is way over there, how do you walk unaided?" I dunno, they've been like that since I was a kid, I just walk.

I'm in the study, at least I'm getting paid. Ah the joys of being decrepit. I remembered to pick up my antibiotics and came home to my middle son smiling bigger than the Cheshire Cat. He was happy to be home from school, and happier still that the kindergarteners still had to go, albeit on a two hour delay. Their school, and the high school, are apparently on a different grid, and they never lost power.

They have no school tomorrow, or Monday. You would think that with everything going haywire today, and having a house full of kids two days in a row would make me crazy. Or maybe you think I should be depressed to find out that while I felt better in general, my joints are still inflamed and tender. You would be wrong.

I picked up some Smarties at Walgreens. Ya hear that Wal-Mart? I got them anyway, despite your best efforts to keep them from me! HA!

Wednesday, February 15, 2012

A break in the clouds

First, a rant.

At any given time, somewhere in the nation, at pretty much any given Wal-Mart you will have sightings of Elvis, actual fresh fruit, entire aisles dedicated to the hat-wearing redneck demographic and 10,000 worthless piece of crap toys placed directly at child-eye level so that you spend your checkout wait (oh and there is always a wait) slowly becoming the meanest, most neglectful parent on Earth.

BUT, can I find one bag, just ONE FREAKIN' BAG, of Smarties candy? Hell no. Seriously? Not even an empty shelf spot. They do not carry Smarties. Why? They carry the repugnant Smarties Valentine's candies, which do not have the same sweet melty sugary flavor. Why Wal-Mart? Why? Is it because it is Canadian? What do you have against Canada? Why are you denying a woman in need her Smarties? Do you think I have the patience to make two stops with an over-tired and slightly sociopathic 2 year old? Huh? Do you know that I bought a QUADRUPLE White Mocha Latte today, just to have the energy to deal with him in one store? That is FOUR shots of espresso. And probably 700 calories.

So I took the Valentine's Smarties, and lets just say I'm very disappointed.

Now, for the good news.

Hands and wrists! That is it, just hands and wrists! The backache went away within an hour or so of waking, and then for the last two days all it has been is hands and wrists!

I almost want to sing those two words, like "Silver and Gold" from the Rudolph Christmas special. Out of respect for Burl Ives, and the desire to not see his angry ghost, I will control myself.

An extra shot of Enbrel was all it took. Too bad that is the most painful freakin' shot I've ever given myself. I hate that stupid pen-injector doohickey. I bet it is some huge 16 gauge harpoon, I don't know, you don't ever get to see the thing that is injecting you. Or maybe the medication really does sting that much, I don't know. All I know is that next month I'm getting prefilled syringes. I would rather just draw up my own, but I guess they don't give you that option, lest you become an Enbrel junkie....not sure why, but I guess they gotta protect us from ourselves.

Other good news? No cancer in the bladder! Woo!!! That is great news for me. One less thing to worry about. Well except for the kidney infection that I knew I had (and d'oh, forgot to pick up the prescription for, again.). Guess the bags of IV antibiotics at the ER the other weekend and then taking cephalexin 4 times a day didn't get the job done, not cool.

Yeah, the ER. Luckily for me, we were downtown having just seen Cesar Millan.....hilarious show, BTW. So hubby dropped me off at OSU, instead of Mt. Carmel East, which is where I normally go. My nephrologist works out of OSU, and so the whole ER was familiar with his patients and my freakish kidney disease. I was there more for my RA though, it was so bad, combined with the kidney flare, I was sure I was destined for death. They sent a 4th year med student in to get my history and see what was going on. As I explained to him the crap I was dealing with, I guess I used too many medical words in the proper context because when I got to the point where I was telling him that I dipped my urine that morning and found nitrites along with the leukocytes so I was sure something was up and the protein was greater than normal, he stopped me. "What DO you do?" I assured him I was not in the medical profession, but had been around the block one too many times, and know what to watch for before I start going downhill fast.

Later on they came in with Dilaudid. I didn't want it, I really wanted Toradol, even though it is an NSAID, could I please have it if my creatnine clearance was good? Dilaudid, I explained, didn't help much with the RA pain, but Toradol would. Again I was given an odd look. "I'm not a drug seeker, I don't want the Dilaudid" The nurse assured me that most drug seekers don't present having accurately told the medical staff what they'll find on a multistix because they dipped their urine that day and knew it wasn't good. Nor do drug seekers turn down the Holy Grail of the drug seeker to beg for a non-narcotic. But sadly, they could not give me the NSAID, something about "doing no harm" I don't know. I took the Dilaudid. They kept me overnight. Whaddya know, it WILL help with RA pain, when you're given 2mg every 2 hours all night long, so that you don't come out of your haze until 8pm the next day. I kept falling asleep standing up and talking nonsense. I was, if only for a night, my own episode of "Intervention". Thank God that is over. Well, all except the kidney infection.

So here we are a week and a half later, and I'm still infected. At least only my hands and wrists hurt now. How wonderful is that? I'm sure the weather warming up may have helped. I'm also sure that I'd be even better if I had some Smarties to nosh on. But sadly I do not.

There are two places where I assign blame when something pisses me off. The first is John Madden. The second is Wal-Mart. Today Wal-Mart wins the blame game. Curse you Wal-Mart!!!!!

Thus ends a great two days, where my most annoying and irritating of problems in the inability to get the candy I like at the store that is supposed to have everything. I can totally be cool with that!

Monday, February 13, 2012

Whaddya mean a total joint replacement isn't feasible?

Dude, I could be the bionic woman!

This morning I listed off the achy, stiff, hurty parts for George.

lower back
base of skull (the c-spine or brain stem, I'm not sure which it is at this point)
hands, oh God, they were curled up into balls when I woke up, had to basically "unfold" my fingers.

Oh yeah, and my kidney burns.

We both lay on our backs, staring at the ceiling. Then I sighed. "I sound like a 78 year old woman. Good thing I'm so sexy and hot, eh?" That got a chuckle.

Linus was sick, burning up with fever, and Katie had a dental appointment, turns out Linus had a filling at the same time that I forgot about. So I got the extra kids off the school and zipped to the dentist. When my hips are sore and stiff, which gets worse in the cold, I use the cane. So keeping up with Ian is very hard when all he wants to do is sit next to his sister while she gets her teeth cleaned and braces adjusted. At one point Ian disappeared down a hallway and I couldn't find him. I enlisted the administrative assistant and she found him in the dentist's office, trying to hack his way into the computer.

My plastic surgeon is next door, so we went there to reschedule an appointment I had to cancel a few weeks earlier. I kept forgetting to call and do it. He actually had time right then, so the whole crew went into a room. I got nekkid and into a robe, and we all waited. Dr. said everything is healing wonderfully. Then he sent someone in to take the after pictures. Just what I wanted, to have naked pictures taken of me. Oh well, this set was much better than the before pictures!

Took the girl to school, came home and watched Linus curl up and rest, watching Max and Ruby. When your 7 year old watches shows that he professed to hate for most of his life because he was too tired to pick up the remote, you know he doesn't feel good. And he's maturing, pretty soon the periods of play will stop and he will lay around moaning and groaning all day long, getting his first full blown "man-cold". Sniff-sniff, my baby is growing up.

The rheumatologist's nurse called me back. I asked if, instead of just experimenting with chemicals, can we just replace all the mean joints? She laughed, but said that wasn't quite the approach they had in mind. How about a total skeletal transplant? Nope, sorry. No Bionic Amy this week. Double up on the Enbrel for two weeks and see how that works.

The boys woke the baby up after an hour of hard won napping. Grrrrr. I'm still going to try to work, but as soon as I log in to the work system he will be here like a magnet. Still got a lot done today, and now I'm walking more like Frankenstein than the Tin Man post rainstorm. The Peter Boyle Frankenstein at that, could probably even grab my cane and dance a little to "Puttin' on the Ritz". Or not, no one here would get it and just think I'm weird(er).

Sunday, February 12, 2012

Entering week 4 of the RA flare from Hell

It is cold outside. I'm talking about nose-hair freezing cold. That is never good. I knew this winter would be the template for the rest of my life, and it turned out to be very mild and I really didn't have too many problems. But then winter woke up and arrived a few days ago. Holy crap!

The thing about arthritis in general is cold weather makes your joints stiff and ache, cold and wet is even worse. So I woke up this morning, with my lower back hurting, which it hasn't really done in years, since we got the Tempur-Pedic knock-off bed. I have osteoarthritis in the L4-S2 vertebrae facets. That should have been my clue. I was actually moving around pretty good, and decided to make it to the early service. Got breakfasts going everyone dressed and opened the door for the dog.....cold blast of wind...ugh. Started getting ready myself, and my fingers were starting to hurt at the joints as I applied my make-up. The thing about all this is, if you don't use your joints, they get more stiff and sore. But if you use them, they don't get as stiff but they still ache and hurt. I ended up looking like Lily Munster when it was all said and done, but, hey, she was kind of hot, in a dead sort of way.

Back out into the blast of cold air to start the car to warm up, then back in for some forgotten item, then back out to strap Ian in his seat, then back in for the Bibles and I grabbed the cane, just in case. As it turned out, that was a smart thing to do, because the dumb thing I did was forget to take my prednisone. By the time we got to church, impressively late, even for us, 20 minutes into the service, I was walking like the Tin Man after a rainstorm.

Oh well. Had a lot of people asked me what the deal was, I explained, no biggie, could be worse etc.

So here is the bad joint list for today, elbows, hands, knuckles and the middle finger joints....don't know what those are called, maybe if I took the time to know what they were they wouldn't be so pissed off at me all the time. My lower back, my hips, knees, ankles, toes and the base of my skull...I think that is called the c-spine. The TMJ has settled down, and now only hurts when I chew or talk a lot, which is great because I need to lose weight and that was one of the worst pains I've ever had. The chest wall is still hurting, (where your ribs connect to your sternum) but not as bad, I barely notice the discomfort when I breathe now. Oh yeah, and a pee dip this morning revealed more white blood cells, nitrites, protein, extremely acidic urine, red blood cells and ketones. So the antibiotics didn't really do much of anything last week. At least I know why they still burn and hurt.

We got home, Linus went with George to IT Nirvana (Micro Center) after he finished doing the computer work for the last church service. Ian cried and screamed almost all the way home, until he threw up. Then he fell asleep. I carried him in, could barely make it up the stairs my knees were stiff and weak. But we got there, he never woke up, not even when I stripped him and washed the spew off his chest and neck. His carseat cover needed to be washed anyway, as did my hoodie, which became covered in transfer spew. And I got gas all over my gloves, so I was going to be doing a load of laundry no matter what. bleh.

I have work to do, but Katie needed help making her Valentine's Day box for school. More cutting, folding, taping, twisting and pasting. I began to get wicked cramps in my hands, kind of like those Charley Horse cramps you get in your legs, only in your hands, they bend my fingers in odd ways. Very frustrating, but we got it done. And amazingly enough, she thanked me for helping her even though she knew my hands hurt.

So, in all, it sounds like a pretty rotten day right? You'd think that at some point a person would want to give up and just curl up in bed with a billion heat packs and wait for the pain meds to take over. Two problems with that, they don't have beds at church, and I cannot take NSAIDS (even though on occasion I do when I can't stand the pain) because of how harsh they are on kidney functions. My choices are Tylenol or narcotics. Neither of which are very effective on RA pain. Crazy huh? 800mg of ibuprofen, or 2 Aleve will settle down my joints more than 10mg of Oxycodone. So those choices were out.

We left Ian and Katie at the nursery (she helps out down there, plus Ian won't stay there without her (or me). Linus and I headed to the sanctuary, and took our regular spot up front in the second pew. We came in during a sermon by a guest speaker who is a youth director for Jacob's Porch. They work with at risk youth. Linus listened to the things that these kids were facing and he said he wished he could help them. He had brought his change bag, hoping to go to Target later and buy some decorative glass things that look like flat marbles. To him they are like valuable jewels and he likes to look at them. Whatever. It makes him happy, what do I care? A bucket of these things costs $10. He has been saving and scrounging for loose change everywhere for a few weeks and had a little over $8. I told him that if he gave some of his money to their special collection bucket (a real metal bucket) then I would spot him the money to buy the gems. It came time for communion. He took out a dime and stood up, I figured that was going to be his contribution. We were the second people in line, so the bucket was empty. Linus proceeded to dump his ENTIRE change bag into the bucket. The sound of all that change hitting the empty bucket was unreal, and lots of people took notice, including our pastor, who told him he did a wonderful thing. Linus said he wanted to give what he had, so he gave it all.

What an amazing little guy I have. This is the reason I go on living and doing as much as I can, while I'm still able. No matter how uncomfortable or difficult, BEING in life, instead of watching it go by, will always be worth it. Had I stayed home and skipped the service that moment never would have happened. There will be days when going and doing are impossible, I know. But for now, I'm not giving up. I owe it to my family.

Saturday, February 11, 2012


So I've been using Facebook as a place to talk about my Rheumatoid Arthritis, LPHS (Loin Pain Hematuria Syndrome) and my Chronic Kidney Disease , it affects my life daily and sometimes it is all I post about. Writing it out keeps me staying positive with the people around me in real life, namely my children and the children I babysit.

However, it gets old and depressing to see your friend write about their constant struggles. Yes there are some funny moments that would not happen were it not for these conditions. For example: Several months ago I was in the midst of a terrible RA flare, my hands were very stiff and weak. I had gone to the bathroom, shut the door and could not open it again. The door knob kind of sticks a bit. I was trapped in my own bathroom. I yelled for the only other person in the house who could open doors, as my 2 year old had not mastered the task at that time. My saviour was a 5 year old afternoon kindergarten kid who is with me in the mornings. After 15 minutes of me being trapped and yelling, he finally came looking for me. Then he showed me how to turn a door knob to open doors. "I can't believe you are so old and still didn't know how to open a door"

My husband changed the door knob that night, so I can pee in privacy and not fear being trapped for long periods of time.

I hope to use this as not only a place to update my status, but also to track my symptoms over time and share with others how I deal with the cards I was dealt. Chronic conditions never go away, they may settle down, or even go into remission, but they rarely just cease to exist. These are things that I must live with for the rest of my life, and my life may be cut short because of them. I don't want my kids to remember their mama as laying in bed, balled up in pain and crying. I want my kids to remember me as working through my adversities, not giving up. I want them to see and understand that life is not always fair, but being given a crappy diagnosis doesn't mean that your whole outlook and attitude has to be crappy. If you do your best to stay positive in your daily interactions with people and your duties, you naturally wind up believing positive. Sometimes to do that, I write down all the negative, and say "okay, today my kidneys are bleeding again and i'm in excruciating flank pain, and now my elbow joints are flaring up, which is new. So I'm going to bitch about it on the interwebs and get on with my day, because bitching and whining won't change a damn thing."

I'm not terribly consistent, my other blog kind of died out when Ian was born (or more to the point, when I joined Facebook) But I did have some funny posts over there .

Life is what you make of it. Make it good, and if you have a chronic condition, feel free to share your story with me and I will publish it on the blog. The more the merrier.