A really off day

Last night I went to bed with what I had hoped to do during today... And today when I lay awake in bed still hoped to do those things...But then I got out of bed and started to move and things went south and I had a really off day...

- my foliculitis rash got way worse,- the bumps are more intense and itch more
- my feet hurt Sooo bad I seriously couldnt put any pressure on them- I stayed on my leather chair in my living room all day with the exception to pee and get dinner. I was slow and held my pee as long as i usually do that I actually wet myself cause I couldn't get to bathroom in time- awesome. I cried then laughed.
- my thumbs remained out of place most of day and hands killed I could barely hold anything
- mouth sores nasty
- felt queasy
- had all over nasty body fatigue
- I was extremely tired all day cause I didn't sleep well last night.

As you can imagine it was a hard day. I attribute a lot of today's crap because I didn't have my Lyrica for two days and yesterday I took my methotrexate. It's just makes me sad for myself and that this is my life at times. But then as hard as it is I am blessed and God gives me the strength and reminders I can do it... Like
- calling my sister in law who picked up my perscriptions, lunch and Popsicles for me
-my niece coming over and washing the girls, brushing the girls and playing with them
- looking out my window and seeing a cute lil snowmen my brother & his twins built
- talking with my older sister randomly though out the day and her constant willingness to help me
So... Yes as I lay in bed with Darla contently chewing on a bone while Olive is jumping on top of her I am glad today is over and tomorrow is a new day... Who knows what it shall hold.

Here is a part of lovely rash, darla in sink, and girls chilin with me (I love pictures!)

Six weeks new treatment

As of thursday I am now a full SIX weeks into our new treatment- Actemra, and its NICE to say we are finally seeing improvements. I was told SIX weeks was the turning mark for most people to start to see some improvements and THEY WERE RIGHT!!!   So hears to the number SIX!!

Here are top SIX things we notice now that we are SIX weeks along...
1. I can wiggle my toes EVERY morning
2. My morning stiffness is decreasing
3. No more fevers
4. I am only on one pain killer - not three
5. I can drive again
6. my heart is doing great!!


now here are the SIX not so fun things we are dealing with
1. a HORRIBLE focculitis rash
2. a fungal throat infection
3. mouth sores
4. really shaky hands
5. not sleeping all that well
6. looking at new deformities :(

now SIX things that are happening soon...
1. Start occupational therapy for hands
2. start physical therapy for my hips
3. start physical therapy for my knees
4. getting braces for my feet
5. seeing a oral surgeon about wisdom teeth issues
6. seeing ENT for ear infections and ear problems.

Hope everyone is doing well. I am happy for today I am wearing NORAML jeans.  Just like the little tank engine I am trucking along. ...

Infusion!

Well Thursday 12/8/11 was my first Actemra Infusion. I was extremely nervous and scared about it - wasn't sure what to expect, would it hurt, how would I feel, is it going to work ect. LOTS of different thoughts and feelings went through my head. On thursday my dear dear friend Amy came with me. She also happens to be a WONDERFUL photographer and captured this adventure! So... here is our day at the Infusion center

This was in the waiting room. We thought it was very strange, turns out its an ad for wigs, which makes sense because we were at the oncology office.

Amy and I as we were waiting for the nurse to come.

Like usual... the nurse had  a hard time finding my vein. I really liked the heat pack.

My stinky curled RA feet and toes.

ALL DONE!!

 The infusion room/center.

 All things considered it went well. I got a HORRID headache from it, but that day it was ok.  However, these first few days after the infusion have been rough. I have had horrible HOT flashes -where I break into a deep deep sweat, then I get the chills. My headache comes and goes. My hair is falling out more. The HORRIBLE nerve pain I had about a year ago has slowly been creeping back to my hands and feet. My initial first bloodwork, doesnt show much. My joints REALLY hurt, I mean REALLY hurt and I have horrible fatigue. I talked with my my rheumatologist yesterday -and this is sort of what she expected -hence me taking the time off. So, i went into the office and got a HUGE cortisone injection in my booty :) which is helping with the pain. 

For more of Amys wonder photography you can visit her website AmyP Photography.

For more information on Actemra you can visit this website

Drug withhold

Dear injectable methotrexate,
It is now going on month 2 where you are on drug with hold and it's starting to really effect my life. I do NOT understand how all of a sudden you can stop being available to patients. Especially patients like me who need you to modify and stop disease progression or patients who have cancer. It is just not right. I never thought I would say this, but I really miss our weekly injections - it's true I do! Because you are on drug withhold I have had to switch back to the pill form of you. For the first three weeks it was ok. However, NOW it's really not! Because I now have to swallow you in six tiny orange pills I get a horridly nauseous and icky stomach ache for at least two days. My taste buds all change and I loose the taste for food. I also now have developed mouth sores, again! On top of mouth sores, because my immune systems is compromised from taking you, you lethal drug you, I have gotten thrush again because my ear infection won't go away and I'm on a antibiotic. So, methotrexate you are once messing with me in a negative way again. I would appreciate it if you would just simply stick to your job of helping my disease progression and joint pain. Also, injectable methotrexate whatever you can do so drug
Companies would "release" you please do fast, your cousin the pills are making me even more miserable then life with diseases can be. Hopefully soon, I will get to pick you up in your small vial. I can't wait until I see your neon yellow self being sucked into a syringe!
I miss you dearly.
Mandy