A long week done!

Yes a long week is over! Hard to believe that tomorrow is Sunday and that the work week starts all over again soon! The good news is that my vacation is coming quickly! Just a little over two weeks..the downside is so much to do between now and then!

The proposal has come back with more edits and some slight changes. All is good except my third article. There have been some tweaks with the variables. I originally had 4 variables (in two studies), and then it changed to 4 variables in 5 studies, and now it is 3 variables in 5 studies. So I am working on some additional literature review before I send back my proposal. The positive, I’m doing work now that…despite slowing down my actual proposal..will “hopefully” give me less work before the defense. So while one date is delayed, the work I am doing right now will be less work after the proposal.

I’m officially on week 5 of Enbrel! Despite the skin reactions and headache I do believe it is working. Hurts like a bia when the shot goes in but it is definitely worth it every week. I am hoping I don’t have many issues taking my Enbrel on the plane in a few weeks! I am planning on being there early and I have secured a letter from my rheumatologist as well.

Funny story to share…we went to switch over our phones from one cell carrier to another. When we went to the new cell carrier, they did not have any Iphone 6’s (which was fine, I loved my Iphone 5) but then the manager comes out and asks us if we would take a special edition Gold 64 GB Iphone 6 for the same price as a regular 16gb Iphone 6. What do you think we said! 🙂 I love my new phone, it makes typing so much easier…although I find it funny it is so big! Let’s hope it lasts 😀

The craziness of the dissertation process has been eye opening! And I am definitely praying about our future. The job I might have next year, the place we might call home next year, the new things we might have to figure out next year! So many thoughts and stresses…makes me miss the classroom…at least I had a syllabus guiding the semester. Now I am guiding the semester, by getting research and edits done. I am the one who decides how fast or slow to go! Lots of the pressure is on my shoulders and while I like it..it is very new for me.

This semester has definitely been a semester of new things, new biologic (first ever) medicine, first semester of dissertation hours, first semester of truly planning for POST school (first time in 11 years!!!!). So many firsts, part of me wishes we had those close friends to talk out these things with us…but we do not have that at this point in our lives. The positive is that despite not having those close friends who are in our sandbox during this time, I have some excellent support through my FB page. I have met some amazing ladies who support me, encourage me, and text me at times in my life where I need it the most. I am so blessed! And these changes have encouraged my hubby and I to realize the value of communication.

Yes being married and having rheumatoid arthritis, lupus, and fibromyalgia is HARD! Yes being married, going to school (doctorate) full time, and having RA, Lupus, and Fibro is HARD! Yes being married, going to school (doctorate), working full time, and having RALF is HARD!! But we are here fighting for yet another day! And we credit a lot of that to the major support I have found through my FB page (www.facebook.com/STLRALF). It helps me talk about what I feel, share how life is, and receive such amazing support on FB, Twitter, and this blog! So we thank you! You all help in so many different ways!

Off to the library I go! XO J

Proposal Is Off

The edits for my proposal are back in the hands of my committee! I am looking forward to their edits and comments. It is always interesting to me how the paper can sound so good but then three or four people look at it and they give you (the author) ways to improve and next thing you know it sound soo good! The down side for me (given my Type A personality) is the waiting for edits. BUT I do have a lot to do in the meantime, including preparing my IRB and PowerPoint for my proposal. It seems weird to think that I am this close to a proposal date…I remember two years ago I thought this time would never get here. Trying to stay NOT stressed because I do know that I am capable of doing this work. I think it is just normal to still be stressed about this process in general.

Hubby and I enjoyed an us day on Saturday. We woke up and drove to an awesome mall (yes I do love a great mall), and then we went for a pedicure! We enjoyed a day of relaxation, talking, thinking of our future, and enjoying what might be one of the last warm days of summer (RIGHT?). It rained so much last week, I’m hoping it won’t be too hot or humid this week.

I have a month of Enbrel under my belt! YAY! I cannot believe I am giving myself shots but hey I’m doing it. I have had skin reactions to the Enbrel after my first dose. Each week the skin reaction is happening much sooner but as long as it goes away after about two days I’m not too worried. I am noticing though that my hair is getting brittle again…I’m not sure why. I’m not sure if it is the Enbrel and Imuran combo ( I am on 50mg. of Imuran a day)…or if it is just that I need to up my Bioten/Folic Acid dose. Because my hair is starting to fall out again and shedding is happening way more than it was…I’m trying to not straigthen my hair as much. 😦 I LOVE LOVE LOVE straightening my hair…but I did find some awesome Paul Mitchell frizz control so my hair isn’t too frizzy. 🙂

I hope to see some increase in energy and less pain every day as Enbrel takes effect. It is disheartening how some people judge what they cannot see. I was having terrible hip pain today so when I went to the store…I parked in a handicap spot. I got some REALLY dirty looks for an older couple who (honestly) were walking better than me. It was hurtful that people judge you because “you look nice”, “you don’t look sick,” or “how can you be hurting, you look fine.” I have to wonder….was I that thoughtless before I got sick? Did I really only think that people could suffer if I could see their suffering? It definitely gave me something to think about tonight!

I’m in a count-down mood! We are heading out in about three weeks on our mini-vacation/work trip! It is a disconnection from reality for me and a work trip for my hubby! Oh well even a few days away will be nice. The one thing I can say I REALLY like about being done with classes is that I can spend my time each night on something that interests me and I can rest so much more. I don’t have the pressure of getting assignments in by Wednesday every week. I did not realize how good that would feel! It feels great!

Well I am off to rest, write, edit, etc. I got some sushi tonight to celebrate sending my proposal back in to my committee (yes celebrate ALL the steps)…and I picked sushi with Sarachi sauce! SOOO no I did not eat much of it :-P. I’m off to search for ice cream 🙂 XX OO J

Updates

Much has happened!!! I hate that sometimes my isolated self keeps things in my mind versus on paper! I spent much of last week working on edits from my committee! Granted the edits were not as extensive as I thought they would be…granted some areas did need some work but I was expecting major red and I was happy that didn’t happen 🙂

I also decided to stop going to my Bible study. I went hoping to find friends and get connected (while studying the bible of course). But after the first class I still felt like a stranger….it seemed most women were there with friends and honestly I stopped going three weeks ago…not one person has checked on me or asked why I wasn’t there…I guess more me that is more confirmation. Maybe one day I’ll find a class that I can connect with on that level that I am searching for. I want those friends that I can trust and friends willing to understand my life and all that comes with RA/Lupus.

A major positive today….I met my new rheumy! She was very down to earth and willing to listen. I appreciated her attitude and her desire to learn about me. She actually went over my patient history! Wow! She is a drive away from me but today that drive was totally worth it! Let’s see, time will tell how her office does! Crossing fingers!

A downside is I am having enbrel injection reactions 😦 swollen leg post injection = no fun! And to make matters worse, I sliced my hand on a window glass and now it is sooo hard to type! I sure hope my hand heals fast!!!

Despite the chaos of the week, I love sharing what is going on and hoping that others out there know I def get their journeys! I love hearing other stories of survival…of advocating for ourselves and our pain! This journey isn’t easy but we have to stand up and fight for ourselves! And for that part of it is just sharing our life story!

Hugs and let’s hope for a great Tuesday!

Ps! We also went to a dynamo game this weekend!!! Sooo much fun!

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The proposal is off!!

Yes!!! My 100 page proposal is off to my chair for her edits (can only imagine the red!)! Now I’m working on my IRb exempt application so as soon as I propose I can get that submitted.

Second Enbrel was given last night! I am amazed at how sore my other leg still is…guess this week I will have two sore legs! I still do not have my own enbrel yet….my insurance sent forms to my rheumy office that 4 days later have still not been returned. I was able to get one more Enbrel sample so that I have an extra 7 days before I have to figure out what to do next! You definitely have to advocate for yourself! If you don’t nothing happens!

I also got my amazing World Help blogger shirt this week!!!! While I don’t always mention World Help, I don’t think a day goes by that I don’t think about serving and helping those who have needs. I appreciate following World Help on Instagram, Twitter and Facebook (follow them…you won’t be sorry)! The people they help, the lives changed and touched…absolutely amazing! I am reminded even if I cannot go all the time to another country, I can do a lot from my home! There are needs everywhere!

I’m off to the Houston Aquarium! More soon! #spoons

Enbrel it is!!

I’ve been meaning to update but it has been an exhausting week. I went to see my rheumy on Friday. After a 45 minute wait, he walks in and asks me which bio med I prefer —Enbrel or Humira. I told him I had no preference, as my insurance said they cover both. I was able to walk out of the office with two samples!!! Yay! I felt such relief to have a bio medicine in my hand when I got home. I spent the afternoon reading the literature and then getting some help to take my first injection. I never thought the day would come but I was able to give myself my first shot! Whew! The medicine burned so bad but I was able to get it done! I have spent the last few days feeling soooo tired and a major headache. I hope those are side effects that I can adjust to ok. More positive news is that I am done with my LTBI meds!!! What a rough three months taking those meds….so glad to be done! I was able to have a sub sandwich today…first bread in three months! It was a delicious sandwich! I’ve been resting and writing this week! Hope to have a proposal date soon! Crossing fingers! Have a great Monday and I’m adding some fun pictures from my weekend!

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