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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…
You are MY hero. Love you, sister!
Huge compliment coming from you. Wow .Thank you
HELL, yes……you will kick this. But, please, please, please, PLEASE, take the time to take care of yourself. If you have to take some stuff off your plate, it’s okay. I PROMISE, it’s okay. xoxo
I know. I know. I just don’t want to slow down. We need to catch up on the phone 🙂
Barb – I am really sorry to see you are going through all of this. I know we have only spoken on the phone a few times and never met IRL, but I wanted to let you know I think you are an amazing person. You have dealt with so many things already, but I know you have what it takes to handle this too. White Light and Bunnies 🙂 to help you get through this challenge too.
Dawn-I have always considered you a good friend. We have been through a lot in what? 10 years now? And White Light and Bunnies always makes me smile 🙂
It’s hard to believe it has been that long, but I guess it has. You have helped me survive PTA, coupon drama, and teenage daughters. Hopefully the White Light and Bunnies will bring a smile on those really tough days and know that if there is anything I can do, you only need to ask. <3
The devil can’t have anything for nothing is due this account as long been settle. On the way out Mr. Devil take this game called Lupus with you. Hang in there for tomorrow will be better– Mothers always know–love you forever
Barb, document away. I do the SAME thing with Google and I think so many o us in this digital age do as well. Knowledge is power, and even if the news isn’t good, I want to know about it, y’know? Whenever I stumble upon a blog that tells it like it is, I don’t think “overshare!” I think, “THANK YOU!” Those unfiltered, honest posts are gold to a mom with a special needs kid trying to figure out WTF is up. And yours will be so valuable to others going through similar treatments. Share away. We love you!
I totally agree with the parts where people are real. I always tried to be that way with Carts stuff and still respect his privacy. Can’t really expect him to if I don’t right?
I am so blessed to have you as my friend. You will kick this. You don’t have a choice, babe – I wont hear of anything else. Plus, yes you need to chronicle this journey, for others, and also for you. And all of us.
Like always I love you and so glad I’ve gotten to know you over the past years….you rock….you’ve got this!!!!
I love you. That is it!
If I were making a decision about taking these drugs, or had made it, this journal would be GOLD to me. I need to know the plan, what to expect, how to prepare. This sharing isn’t whining or please pity me, it’s valuable. I love it and think it would be a huge help to others with Lupus.
Any I love you! You will kick this. I know it.
Barb-You’ve been in my thoughts since we moved from LV. I know, it’s been a long time. How can I help you? or Carter or Connor or Bob? No forget them…just you. Mom’s don’t get enough help cuz we’re too busy doing things for everyone else. So seriously, what do you need?
Lots of prayers & love sent your way!
Ann
Thanks! Connor driving coupled with Carter being healthy has made such a difference. I could not have done this last year but it seems like it all is falling into place
Thinking of you today Barb. You are one heck of a strong woman and I know you can make it through this with shining colors and glitter too! I’m so glad you are sharing some of this with the rest of us. It’s good to let others know when you’re down so we can help pick you back up. AND so others going through similar know they aren’t alone. You are a rock star girlie with no reason to fight this alone – don’t forget that! Big penguin hugs to you!
I do not have Lupus nor does anyone I know! I just read this and I’m blown away! Knowledge done in such a enlightening way was beautiful to read! You have an incredible gift to share with others. I’m so sorry life has been so challenging for you and your family. Weather you are Christian or not I’m sending my love and prayers for you and your family. May our most blessed father send healing wherever is needed for you and your loved ones!💜🙏💜 keep on posting!