I struggle with whether or not I want to share my live journal about my latest round of medications since I often dance around the subject here and there I don’t want to fill you in on all the gruesome details and I certainly don’t want my blog to become about documenting my illness. I have always been and always hope to be the positive voice among some of the sucky stuff that my son deals with in having Spina Bifida. But as I teach him how many people have come together and learned so much from his story through this blog and Spina Bifida Connection, I can’t help but note my own hypocrisy in not being more open with my own story.

I am an over googler. When I want to know something about a medical condition, I want to know the exact precise timeline these things happen. Did I ever share with you that when my father passed away I sat there holding his one hand and with my other I was googling terms like “how long after the toes turn blue will his breathing stop”. I am just the kind of person that needs a blueprint. The more prepared I feel the better I can cope. But when I google this for a blueprint I just see general talk. So, here is my experience for those of you looking for what to expect.

This new medicine I am taking is called Methotrexate. It is joining its earlier friends of plaquenil, savella, and prednisone and 5 other daily meds (yes, I have a granny pill holder now) to wage the war on the autoimmune disease destroying my body called lupus & fibromyalgia. The goal of bringing Mr. Meth onto the team is to destroy my immune system so that it will stop fighting itself.

Battle 1of 52 began yesterday and here are my honest real-time journaling thoughts not edited as it happened:

Methotrexate Day 1-

Saw a movie with the family this am and then went to Tokyo Joes.

Took first meds at 12:30.

1:45 I have read accounts of being able to tell when this stuff hits your bloodstream. I think it just did. A bit dizzy and lips are tingling. Stomach is burping and I am sweating up a storm. Sipping white blossom tea from Tokyo Joes wondering why the hell I decided to take this with all I have going on this week. I am so stupid.

4:00 pm went over to sprouts to buy ginger and other stuff for nausea. Sleepy and dizzy and stomach feels like lunch is just sitting there. Good thing DH drove cause I think I would have been too dizzy. Feel like I am in that place between drunk and buzzed.

7:45 pm felt much better last few hours. Still a little dizzy but was hungry for dinner and ate my share of ribs

10:15 no stomach problems other than the heavier feeling today. Just took all my regular meds except vitamins. I would say overall today I felt MUCH better than I had expected. My overall lupus symptoms seem the same. I do have a dry mouth and feel like mouth sores are coming on. Using more steroid wash than usual.

Methotrexate Day 2-

6:30 am-slept great. Woke up still sleepy and nauseous

8:50 after power bar, small amount of coffee and morning meds, stomach gremlins and sweating have set in. 3 times in the last hour. Stomach cramping is terrible.

Somewhere around 12-  feels  like a devil was being exorcised from me.  The sweating, cramping, shaking and constant pouring of vomit and well, other things *edited made me not be able to lift my head off the bathroom floor. Finally got back to the bed and am praying for some sleep.

3:00 feels like round 2 is coming on. My head is killing me. I slept but all the tummy stuff is coming back.

5:00 Was able to sleep. Feeling better.

6:00 chips, hummus, and Gatorade–these are my new friends

Day 3-

woke up feeling pretty darn good.

1:00 had to go downtown to a new dermatologist to have some lesions looked at. Thought I was feeling fine until I got about halfway there. Driving was a big mistake. I got dizzy and sleepy. Noticed myself stammering at the doctors. That feeling of buzzed was back but this time it doesn’t feel like a good buzz.

5:00- no tummy troubles today. Just the general head fogginess. I hope this doesn’t mean I wont be able to drive until Wednesday’s each week. That will suck.

But you guys, in all of the yuckiness known as Monday. THIS made me smile. Isn’t this the coolest thing ever? That is my friend Jo. She makes me happy

So, TMI? or if this does help you please let me know. It will make me feel much better that my over-sharing is warranted…

Last night I was gifted a new nick name- Mrs. Holliday. The two l’s are intentional. Dave felt it was a great moniker for how I sounded while hacking up a lung and still drinking up at the bar.

It was an impromptu get together of old friends and new and a tiny cough was not going to keep me away.

Certainly not as I had pressed on over the last few weeks on the wings and the prayers of steriod injections and double my daily steroids. I know, doubling them up isn’t smart but it was just to get me through these really tough holiday weeks. It helped me to hide how badly my body was yelling at me to stop.

BUT I have no time to stop. I have family I love, kids who need me, friends I adore, a career that fulfills me. I have high school basketball season to cheer through. Finals to help study for. Doctors appointments that must be managed. Many, many of those.

You get it. I know you do. All of you have your families and lives that must go on.

And just when all seems to be on the upswing I wake up with an ugly harbinger that the lupus knows I have sold my soul too long and it is come to take it’s due. The lumpy, itchy rash on my arm is the mark of the dark Lord of Lupus. It’s a small warning that he is always watching. Tricks and techniques may bide me time and make life a bit more normal for the short period. But I will always pay. A rash means the SLE is getting into the skin, a cold sore is an attack on the mucus membranes, a large amount of hair on the bottom of the shower is alopecia making its way in, or I guess that would be out.

I know all of this. But it doesn’t make it easier, this play now, pay later, lupus like karma. I don’t think that wanting to see your kids game, or volunteer at the Food Bank, or have a lovely night with friends should COUNT as being worthy of later let downs in your health.

It isn’t fair. And I am mad. Actually, not mad. I am pissed. I am not going to stop having parties, or going to a late basketball game, or lifting my son into the car so we can get out for some fresh air.

Dammit. I’m not. Lupus can suck it cause I am one feisty momma with some tough old stubborn Irish genes. And it isn’t going to scare me into a life of chronic illness just yet.

*as far as I know Erin coined the term #suckitlupus