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......."