The changes

You know  are always aware of our bodies and the changes. Today I saw my rheumy…and we finally decided that I have yet another friend – Chronic Fatigue Syndrome. This friend on top of my current friends – Rheumatoid Arthritis, Lupus, Fibromyalgia, and Sgogrens. A nice list seems to be forming. I appreciated how Dr. T took the time to not just talk to me as a patient but as a researcher. We discussed journal articles on CFS (granted I need to do more on my own) and current treatments. Interestingly there isn’t much I can do for it, but learn to balance and things of that nature. It was an answer but not necessarily one that brought peace.

I also walked out with blue handicap tags. I have had red tags for like 4 years and while finally get blue tags is a relief (no more going every six months to the courthouse!) I was sad! I’m not ready but I guess my body is, and less waking and dealing with tags is a way to lessen some loss of energy.

Other than that day, I was also faced with the other evil enemy of my diseases – infertility. I have seen so many friends announce their awesome news of an impending new one on the way. And it is so heartbreaking to know that will never be my news (minus immaculate conception/miracle). I try my hardest to be happy for them, but deep down it hurts too. Another battle to fight in my journey of life! 

And my life journey continues to show me that I just need to get up! And keep fighting…no matter than pain, fatigue, or heartbreak

xo J

Pictures 

After a super rainy day today, I decided looking back at the warm week I spent was fun! Thought I would share some :-)…see below. Today has been one of those super rainy days…my entire body has flared most of the week and I’ve managed to experience some of the worst fatigue. I’ve had such little energy…pain levels have surged but I’m still here. I still got up today and functioned…tough as it was! And I did my best to make it a good day! the battle is daily! The pain is major…but we still fight! 

I have spent a lot of time thinking and planing this week. It feels sooo weird to have no homework or school. I’ve dreamed of this moment…and now I feel like something is broken. I’m waiting/hoping/preparing for the next chapter in life! I’m excited to see where I go next. 

As I was with my doctorate, I know the going will be tough, the steps small and deliberate one at a time….but I will still make my goals (lords goals) happen. Don’t ever stop fighting! 

   

       

Catching Up!

Spring break has come and gone! I will say I loved getting to read books over break. It was the first time in years that I have taken a break, rested, relaxed and read a book Truthfully it was like 3 books! I’m finding ways to keep myself occupied as I wait for the semester to finish. That includes job searching, and trying to brainstorm what the future holds. There are so many things to consider, plan, and hope for with regards to the future. The good thing is, I have hope that all things will work out and the best is yet to come.

Despite the pain of the week (thanks to the rain) I am sooo happy that tomorrow is Friday. As usual, it means SHOT TIME. But that’s ok! 15 seconds of torture is worth the relief! I see my rheumy on Monday, I am hoping she might bump up my MTX one more level. I think that will help my Fibro pain. At least I hope so. These past few weeks have been painful! That’s for sure 😦 Amazing how every joint in your body can definitely hurt.

And through these times, I will say I have recognized the friendships I have developed over the past few years. It is sooo hard to find those friends, those friends that are not there to use you or are only your friends when it suits them. Those friends that check in with you, that understand your health problems, and that are willing to get to your level. Trust me, if people never come to you unless they want information they are not your friend. It is sooo hard to find friends, to find those people who will be willing to put into your life. We are def. grateful for those making the effort, you are such a blessing!

here is to hoping that the weather continues to warm, that things continue to happen to grow us, and that no matter what I continue to see the positives of this life. RALF will not win 😀 I’m excited to see what the future holds despite the journey 🙂

J

Spring Break

My FIRST Spring Break since college (in 2003) that I literally have ZERO homework to do. Granted I should be working on publications because I now need to start sending out my journals for publication. BUT that can happen after Spring Break…this Spring Break I am going to take a week and do NOTHING. I am going to enjoy a cruise down the coast of Mexico…and for once I”m not even going to feel guilty about being lazy. Yes I am super excited!

This week I have been battling major headaches (getting back on Enbrel and MTX I think caused those) and then of all things my Enbrel bruised me horribly last week. Not sure why but oh well. I have recognized the importance of the medication, definitely after missing it the past few weeks. I am like, 15 seconds of pain is totally worth the result. I just have to remember that when it comes time to hit the clicker! That clicker, I have to psych myself up for that clicker every week. I hope thought that eventually I will get better at that part of my weekly meds.

I’m downing airborne and praying that I have a healthy cruise! I have been around sooooooooo many sick people this week. Are you like me..someone sneezes and coughs and you have that sinking feeling that “oh my gosh I”m going to get sick.” I hate feeling that way but honestly, we know that a cold can make us soooo sick. I know in the past 5 months of Enbrel alone I have struggled with multiple infections, and struggled to heal. BUT since  I don’t live in a bubble…I say many prayers and hope airborne loves me 🙂

I’m excited to spend a few days of rest with my kids and then I”m looking forward to the ladies vacation in Mexico!