Well, the RA has been kicking my butt a bit lately, making it hard to type. I think I want to get one of those voice activated recorders so I can record all the stuff I want to say for later. I always come up with great ideas when I'm stuck in bed, and then promptly forget them when I 'm up and around again.

Since I had the allergic reaction to Humira, it's back to Enbrel and Methotrexate for me! Blah..I can't even begin to describe how very unexciting this is. If I fail again on these, it's on to infusion therapies, which I have skillfully avoided until now. I have medicine for the nausea now, so hopefully some hair loss and fatigue will be the worst of it this time. I'm really tired of doing all this, I hate giving myself shots! What a baby!

I have to admit that it is triple hard now that it is summer time. I LOVE the sunshine and of course on the chemo you can't be out in it. I want so much to just blow off treatment for the summer, but the relocation of my toes has convinced me to sit this one out. Guess it will be video games for me this summer lol!

Humira

Well, the Dr gave me two sample shots of Humira in the autoinjector and on Wednesday I did the dreaded MTX injection and then broke out the GIANT Humira auto pen. Wow that sucker is huge!! I live so far away from my Dr that I had to take the pens out of the packaging and put them in an insulated ghetto cooler (you know, wal-mart bag with ice from Sonic in it lol!) to make the drive home. Ummm, the instructions were in the package I guess. So, I look at it, figure it is the same and the Enbrel sureclick and get started.

Nope, not the same. If you don't hold the button down on the Humira the needle pops right out of your leg and shoots medicine on your comforter. Dammit. Got my courage up and ended up with half the dose..maybe..Now Enbrel, you press, click and it takes over from there. Humira, you pinch, press, click and hold. I guess I should have looked at that YouTube video BEFORE I gave myself the shot. Oh well, better luck next time?

I did get sicker than I've ever been though. Nausea, fatigue and just yuck yuck yuck. But is it the every popular, never fun MTX or is it the Humira? I guess I'll find out this week as it is just a MTX shot. I hope and pray it's not the Humira. I don't think I can stand having to try yet another biologic and I don't want to add more pills to my already growing collection to offset these side effects.

On the plus side, it's Sunday, 4 days after the shots and I actually feel better, so maybe this will work?

I survived!

I survived my daughters wedding! It was iffy for the latter part of the day for sure. We had 75 people come out and of course it was an outside wedding it was a toasty 90 degree day :) My daughter was beautiful of course and everything went well. However, I guess I just tried to forget I had RA for the day and just be Mom. I don't think I'll make that mistake again anytime soon.

Oh and I had insisted on keeping my oldest granddaughter who is 3 overnight so they could go on their honeymoon. What was I thinking? By the time the last guest left at 10:30 pm, I had been going full speed since 7am and I was done. My feet and ankles were huge and throbbed in such a manner I had to check and make sure they weren't doing like cartoon feet lol! The fatigue was unlike anything I had felt before. I was almost frightened by the intensity of it. I haven't used that many spoons in a really long time. My granddaughter was awesome though and willing to lay with me and watch Baby Einstein on TV. Thank you Dish lol!

The next day was a nightmare, in fact the next three are a blur of agony and fatigue. Then it was time to drive to Dallas to see the Dr and of course I felt much better by then...but we did figure out my meds (Enbrel/MTX) were not working anymore so now I have to try Humira. Doesn't he know it took me three years to get up the courage to try Enbrel?? Geez... So, roll the dice again with a new biologic or suffer endlessly. The MTX sucks period. Nothing will make that better, but it's safest, but really that's not saying much is it? And guess what? You need to take it with all the biologics or you build up antibodies to them and they don't work. Oh, now you tell me after two years of Enbrel working like a dream alone. Quality VS Quantity../sigh. Yay.

Treacherous Treadmills

Yesterday I had to go for my follow up appointment with the Cardiologist for a stress/echo test to get some clearance to start exercising. Well, they had asked me if I could WALK on a treadmill..I thought about it...yeah I think I probably could. Well after being hooked up to about 30 wires, a large box, a blood pressure cuff and a super thick cord we were ready to go!

I really wish they had told me it is not really walking. Rather its jogging up and incline on a belt that runs faster than me! I am not the most graceful of women to begin with..add cords, wires and speed and yeah...By the third incline, it just about flung me off of it lol! Then it's rush rush rush to the table and......she pulled a cord loose. So, reattach! Hurry hurry hurry and done. Wow. Now I have aching hips, horrible knees and about 5 lovely welts in the shape of a circle all over my chest and belly!

I told them I had RA from the start, made sure they had heard of it, knew what it was and told them it could possibly cause me challenges on the treadmill. And when it did, the PA was upset with me! But the lady doing the sonogram told her to calm down, she had what she needed and gave me a pat. I love her! She recognized right away when my hip was giving out and was right behind me helping me not to be flung into the floor. She told the PA I had to stop. Sad isn't it, that a person who does the radiology understands better than the physicians assistant. But not surprising really. Bottom line? I PASSED! The cardiomyopathy is finally gone..resolved and my heart functions are back to normal! Yahoooo! Now off to master those evil treadmills!

Horses are here!

Last night the neighbor farmer put 11 beautiful yearling horses on our property. They are incredibly beautiful and I want to make friends with all of them! If it wasn't for this extremely rude RA, I would have been out there immediately, helping, touching and eventually riding. But instead I have to ride out in the truck across the pasture to look at them. I am envious in a way. They are so free. I want to be free, I want to run and play outside. I'd like to walk like a normal person even or maybe sit in the sun! Go away RA, its summer time and I don't have time to deal with you right now!

Bye bye hair...

So my hair started falling out today. I'm not sure how I feel about it. On the one hand, I have thick hair so maybe it won't be noticeable for a while yet, but on the other hand..OMG it's my hair falling out!! I'm going to try not to obsess to much about it. Yep, gonna try. Funny the questions that immediately come to mind...is it ok to rinse it off my hands down the shower drain or will it clog it up? Should I instead gather it and throw it away? Umm yuck! And hooray, I get to take another shot of the chemo Wednesday. Daughter's wedding is Saturday...please let me not have a bald spot! I have wild curly hair and I read a post on RaWarriors fb that said the chemo treatments made her curly hair straight. Maybe that will happen to me and I can finally let it grow out, well when it stops falling out! /points to hair, orders it to STAY!

It was so windy here today. I'd go outside and then come into my house and realize how snug it really is. That made me think about my husband. No matter how stormy it gets, its always snug and safe near him. I am truly blessed in that respect. I read posts about women who's husbands don't want to hear about their disease activity or pain and I thank God that mine has such a great sense of humor and such a huge love for me. This disease can't break that!

Oh and finally, I ate spinach that grew in the garden. Still trying to decide how I feel about picking it up outside vs picking it up at the grocery store lol! It was super yummy though and actually tasted a bunch better in the salad we made. Very crisp and flavorful!

Connecting

Whew! It's been a busy few days. The bridal shower was so much fun, everyone really enjoyed themselves, especially my daughter. After the long drive home, I was in such a fog I'm not sure I could have told someone my name if they asked. I fell into bed and slept, slept, slept! Which is actually unusual since insomnia is a close friend of mine!

I love spring in Texas. It's so much easier to focus on what is good when the sun is shining and the birds are singing and the garden is blooming! My daughter is getting married out here next Saturday and I am so excited about it. I hope she is as lucky as I have been in marriage. My husband is my rock, my best friend and my biggest fan.

I was reading the very first blog post I did right after my Dad died. Wow, I am normally such an upbeat person it's hard to recognize that. I am glad that life has a way of lifting you back up again and setting you back on your path. I want to hug that me lol!

Lately I have been connecting with people on Facebook and blogs that have RA like me. It has made such an enormous difference in my life. Before, I didn't know a single person who had what I had. When I would go into the rheumatologists office, I would try and sneak looks at every single persons hands and feet that were in the waiting room. I was so afraid of the deformity and disability that this disease brings. I was obsessed with trying to see if they looked like what pictures I had found on the internet looked like. I wanted to question them all, I wanted first hand information about this big, scary disease that was now suddenly the center of my life.

That was ten years ago, and I never thought to look online back then. Yay for social media! I can't tell you what a comfort it is to read a post that describes perfectly something that has gone on with my body happening to someone else! I'm not crazy! I'm not alone! Finally, I'm not hiding because I am to ashamed of what is happening to me and I'm not hiding behind this disease. I am confronting it head on and smiling while I'm doing it. What a relief!!