progress report

I’ve been taking Otezla for 17 days now, and it still making me sick, but it’s sporadic now.

I exercised this morning for the first time since starting it and that was really hard. I felt like I had no energy and even got a little light headed. But I endured. I’ll work my way back up to where I was.

#NoBoozeSeptember will be put to the test tonight. I usually drink quite a bit of wine on D&D nights, but not tonight. I’ll be hitting the Diet Pepsi hard, though. D is planning to get several cases when he goes to the store. It’s going to be a heavy DP month.

He enjoys that I call it DP because he’s a dirty perv. I wouldn’t have it any other way.

I don’t really think I’ll miss beer all that much. I was a big craft beer person from about 2013 to 2016, but now I’m just sort of meh about it. The only beers I even really enjoy at this point are: Bell’s Two Hearted (my all time fav), 4Hands Divided Sky & 4Hands Resurrection. I’m sort of glad I’m “off” beer, because it has made me fat.

I’m more of a wine drinker now, and my tastes have gotten quite expensive, so a little break from that habit isn’t such a bad thing either. Haha.

Back to Otezla: so I’m 17 days in, and I haven’t had any flares during that time, which is very impressive. Normally, my right knee would have gotten swollen to the point of barely being able to walk (and causing me to cry) at least 2 times by now. I’m cautiously optimistic that this is going to work for me. Another good sign? I stopped treating my scalp psoriasis with topical steroids and yet it seems to be getting better.

FUCK YESSSSSSSSS

I have 20 pounds I’d like to lose, but realistically I will be content with losing 10. I’d like to do so before the wedding, but I’d be happy with 5 to 8, which I feel is quite doable, though not with my previous drinking habits: hence, #NoBoozeSeptember.

Some people would tell me just to drink less and not cut it out completely, but I know myself, and once I pop, I can’t stop…ya feel me?

Also, I want to prove to myself that I can do it. D did something similar right after I met him, which is sort of where I got the idea. I have a lot of willpower so I’m not terribly concerned. The biggest tests will be: a bad day at the office *and* our first Friday night steak dinner without wine.

I have a few hours before our guest start to arrive, so I guess I should go enjoy my relaxation time while I can.

xoxo

 

 

misery business

Yesterday was my first day at full dosage of Otezla. I felt bad throughout the day with some stomach problems and a headache, but nothing I couldn’t work through. Then after last night’s pill, I woke up with what felt like the worst stomach flu ever. Chills, nausea, vomiting…etc. I couldn’t even walk because I was so dizzy. I crawled to the bathroom and ended up lying on the floor until D came to check on me. 

I’m slightly better this morning, but still feel outrageously bad. I just took my next dose and cried a little because I’m scared of feeling like that again. 

This shit better work. I will make it through this phase with the hopes that this is my miracle drug. I’m going to be extremely disappointed if it’s not. Chances are I won’t know for sure for several months. 

I’m bummed because I left my laptop and kindle at the office last night when D and I left, because I figured I’d be right back in the morning. Now I’m stuck at home without my stuff. Booooooo. 

It’s hard to believe

but my Otezla starter pack will be delivered on Wednesday. I have fought so hard to get this medicine (literally for years now…since breast cancer remission) and it is finally on its way to me. Holy fuck. Of course, I had to pay an ugly $300 copay, but at least it’s not $2000, right? Haha. Now that this is finally happening, I’m starting to feel a bit nervous. Chances are I’m going to be quite ill for a few weeks as I adjust to the side effects. As long as I’m adjusted by the wedding…that’s all I care about. Please send good vibes that these meds will work for me. I was walking around all weekend feeling like a 90-year-old because of how bad my joints have gotten. If this doesn’t work, I don’t have any other options for at least a year.

fucking finally!!!!!

United Healthcare approved my psoriatic arthritis meds for coverage, and I’m so relieved/happy/excited/nervous…lots of emotions. I’m also slightly frustrated because these meds can only be administered through a special mail order pharmacy which has been a bit of a nightmare to deal with. But still…progress. I should be able to start within the next couple of weeks. I’m nervous because I’ve read that the first few weeks are really rough with the various side effects. I’m hopeful that this will provide me with some relief though.

*squeeeeeeeeeee*

This is a really big deal for us. I honestly don’t know who is happier: me or D. I had sort of resigned myself to the fact that I would be forced to live with this untreated condition for the rest of my life.  Now there is hope again. I really, really hope this works for me.

just putting this out there

Being upset with someone for having to cancel plans due to their chronic pain condition(s) is extremely shitty and selfish. Trust me, I’m a lot more upset about it than you are, bro. You know, since I’m actually the one in pain. Being disappointed is understandable, but being passive aggressive about it is just fucked up. Thanks for making me feel worse than I already do. 👍🏻

PsA update

I barely slept last night because I was so nervous about my medical appointment this morning, but it ended up going really well. I met with my rheumatologist for the first time in three years (I know! Yikes!) and she agreed to put me on a new med that is now available for my condition. So I’ll hopefully be starting that soon, assuming my labs and x-rays look okay. She also gave me a cortisone injection in my problem knee (ouch!) which should provide a few months of relief in the meantime. I’ve had good results with these previously.

The new drug sounds a little scary, but nothing is without the potential for side effects. I’m just grateful there is no cancer risk. Plus, one of the big side effects is weight loss. Um…count me in, please!

I’m icing my knee, per doctor’s orders, for what will hopefully be the last time for quite a while.

I’m so fucking relieved. I can’t even begin to describe it.

flare recap (stuff I need to remember)

Last night was weird. I was in a ridiculous amount of pain and nothing was helping. A list of remedies I tried:

  • elevated leg
  • ice/heat
  • massage
  • prescription pain meds (tramadol)
  • prescription anti-inflammatory (celebrex)
  • over the count pain & anti-inflammatory
  • soaking in hot bath
  • sleeping
  • wrapping & icy hot rub
  • aromatherapy
  • walking/stretching

There were actual moments where I was screaming because the pain was so intense. I have a very high pain tolerance and this shit was no joke. It was scary because my condition appears to be getting worse (again), and I’m worried that my rheumatologist isn’t going to want me to start the only therapy that actually works to put me into remission (because of cancer issues). Oh and she can’t see me until fucking August, so…

Maybe I need to find a new doc? Sigh.

Anyway, I was feeling like shit so I decided to add booze and weed into the remedy mix. This actually helped. The pain was still there, but it felt far away and didn’t bother me as much. I was finally able to relax. Unfortunately, it also made me nauseous and dizzy. I ended up crawling around at one point. I hadn’t eaten much yesterday, so D came home and made me a filet and baked potato. (I’m totes spoiled). I’m so lucky to have him.

I woke up this morning feeling a lot better. The pain is still there, but it is much more manageable. Good thing too because I am in charge of getting and feeding the kids tonight, which means no drugs for me.

I’m going to try to enjoy spending this rainy/dreary day in bed. D is home writing the final exam for the class he taught this semester. I like having him around.

**notes to self
Alt therapies to ask about: cortisone injection in knee, prednisone – could do that until I get past the breast cancer five year remission mark and then go back on biologicals. Maybe Otezla instead of Enbrel? Is there a difference in the way it works? Investigate cancer risk.

*sunday morning seven*

  1. We got home late last night (after midnight) and so we slept in. Jackson didn’t wake up until almost 10 am, which is unheard of. 
  2. My right foot really, really hurts. I’m pretty sure it’s an arthritis thing. I guess I need to pull out the pain meds, because it doesn’t show signs of stopping anytime soon. *sigh*
  3. That makes it difficult to follow through with our original plan of going to the zoo. 
  4. So instead it will be a movie day. 
  5. Timehop reminded me that two years ago the bf and I were in Cancun. It was our first big vacation together. My ex sent me this nasty email (in an attempt to ruin said vacation), telling me that I was a terrible mother for introducing our child to the person I had been dating for well over a year (and various other reasons as well). I was so fucking pissed off that day. I’m very glad we have moved past all that drama. I’ve gotta say though, my tweets from that day are hilarious. 
  6. That also reminds me of the time, not long after our separation, that my friend sent me screenshots of a conversation the ex was having on Facebook with a mutual friend. (This was after he blocked me). The phrases: “evil fucking cunt” and “epic whore” were used to describe me in that thread. Oh the joys of divorce!!
  7. What a lovely trip down memory lane this turned out to be. Haha. Though it’s remarkable how unfazed I am by it all now. Time heals. Now it’s time for leftover pizza and Jurassic Park 3 with my favorite boy.