I just want to encourage you tonight, if you are like me ..maybe you are up flaring…and hurting! I know the pain seems never ending. In fact, the pain sometimes feels just awful! But I want to encourage you to focus on something positive. Focus on something good!
Tonight through our pain…I hope some good comes out of it! It might be difficult but let’s try!!!
Matt and I decided we would take an US day and drive up to the George Bush Presidential Library. I had always wanted to go and decided that despite the drive we would make a day of it. I really enjoyed myself even though it was exhausting. I figured I could sit at home feeling gross and in pain or I could sit in the car and then walk around for a little bit. I was glad I went even though (AS USUAL) I am paying for it today 
Imuran and I are not friends yet. Def. exhausted beyond exhausted and just feeling rotten. I’m still on a loading dose, the full dose will start within another week. Right before I go into my statistics two class YAY!! NOT!!!
Here are some pictures of our day 
I went for my 3 month appt with my rheumatologist. I was happy to see her especially because I have struggled with the Arava side effects. After a short discussion, she told she recommended seeing an additional specialist and she wanted me to stop taking Arava and move to Imuran.
I can say that appointment was not everything I wanted it to be. I walked away on two new things (Biotin 5000mg and Biotene mouthwash) and Imuran. I’ve taken two of my loading doses……def not good. I feel like I have mono hung over. I’m hoping this eases but one major positive is that I’m not I’m classes this week! Yes!
I laughed when the pharmacist was like….live in a bubble!!!! Hahahahahha I am like how??? But we are praying this new med helps! I’m seeing more doctors on Friday! Yay!! But a good thing, I’m highlighting my hair to help perk me up!
And since I’m bouncing everywhere tonight…Maybe it is just me but sometimes this journey feels sooo lonely! I texted someone after my doctors appointment and the response was “k.” Simple…nothing else…I guess I expected more from this person. It just further makes me sense that sometimes this painful life is lonely. So many people don’t get our journey. But yet we can still find those few and far between gems.
I found someone who I have actually never met. But she encourages me so much, we are on the same journey. I know this week she and I (within a day) started new meds. To be able to text someone and they get it….amazing!!
If you know someone who is on this RA/Lupus/ Fibromyalgia (or another invisible illness) be understanding, be supportive, be encouraging and above all listen. We desperately need people who understand and encourage us.
If you have an invisible illness (RA/Lupus/Fibromyalgia) be encouraged to share and connect. I always love meeting new people. Thank you for all who encourage me! You are truly awesome!
One word comes to mind….PAIN!!!! My body has been wracked with major flares these past few weeks….these last few days have been the worst. Just touching my skin brings shear pain not sure if all the pushing this semester finally caught up to me…or just the weather etc. On top of that my allergies/sinuses have been acting up…yes not fun!!!!
That said it did mange to drag myself out of bed for some major appointments this weekend. I went to Ulta and had a keratin treatment put in. My hair is falling out so bad (thanks Arava), I started taking folic acid. But I was told an intense keratin treatment might help. Why not try??? So I did. Then I sat and watched my hubby test for his blue belt in Kuk Sool Won! I was not going to miss a test. The chairs were soooo painful…my hips were killing me…but I made it through. To reward myself I changed up my nail color (pics soon)!
Then I went home and slept….yet I woke up feeling exhausted. Have you had mono before?? That is how I felt (I have chronic mono…maybe it was acting up again). I am getting a lot of blood work this week….eeekk the vampire people again! Praying my veins hold up!!!! Thanks to Arava my veins are brittle and tend to blow often!
Hugs and spoons as I close! Don’t give up on your dreams…focus through the searing torturous pain! I wish I knew why we had to suffer…I don’t! But stick through it and we can still make a life for ourselves! Your #spoonie #squeaker friend
Whew!! Wow I just looked at my date book!! My calendar says the semester will be over in a few weeks HOLY CRAP!!! I have a major paper due in one class…and that will include a powerpoint presentation on May 1st. And then in my second class I have a small project due next week and then a final presentation on April 24th. So I am almost done! Thank goodness I did a lot of work during Spring Break so I am able to go through the week a little less stressed YAY!!
Which this week I was extremely thankful for that because I spent the whole week sick! I did make it to work on Wednesday and Thursday but then I stayed home on Friday. I thought on Wednesday I was on the mend but I woke up so much worse on Thursday. Booo!!! But by this afternoon I’m feeling a bit better and I was able to work on homework this afternoon. YAY!
I spent yesterday and today catching up on my shows on Hulu! YAY! And then maybe tonight I will have some Netflix fun! 
Thank goodness for those two ways of watching T.V. I have not paid for cable in two years …thank you Hulu and Netflix!
My goal is to start taking Arava again on Monday. It has been rough this week not having it but I had hoped being off Arava would speed up my healing from my cold. Not sure I can say it did but at least I tried! I was able to stay on my Lyrica so thank goodness my Fibro did not flare! YAY! Praise God!
Now to just make it through the next few weeks! I cannot wait until the 26th I am heading to San Francisco. My first time to the west coast! I will spend three days there…landing in San Diego on my way Cannot wait!!
Get yourself back up…AGAIN!!! This thought ran through my mind many times this week. As many people in the United States found…the weather might not have been our best friend. Thankfully where I live I did not get snow but I did get rain! And yes for those of us suffering with Rheumatoid Arthritis and/or Fibromyalgia….rain or inclement weather in general does not help us feel good at all! I remember several days this week (because many times we can feel the weather changing even before the weather does change)…I was mentally screaming at myself like a coach might….get up!! get up!!!
Functioning with pain is so hard!! The pain can cloud your mind..it can make even thinking about moving seem like a major major chore. I think Thursday felt like the worst day! The pollen outside was horrible..making my nose all stopped up and then I could feel a weather change coming. The day just drug on…the pain not ending! I wondered really….seriously…how am I supposed to function when I feel like utter crap!! I moved mentally and physically so slow!
Thankfully Friday was a little better but then Saturday yet another flare and so here I sit today, Sunday, still aching….yet still screaming at myself to get back up…again!! I have come to understand that I will fall down mentally and sometimes emotionally many different times of the day (yes in one day) but the key is not to get upset that I had to take a moment and cry about how much I hurt. The key is to just get back up and fight again!
This week I reminded myself of all I am working for….this degree, a future job, a career in higher education, a family and much more. I have a lot of good I can do….but that does not mean I have to be superwoman. I can acknowledge my pain, I can cry because it hurts so bad, and I can rest when I need to rest because things will work out. For me, my faith keeps me going, and through my faith I acknowledge that life is held in bigger hands than mine. Sometimes I forget but the truth of the matter is that for me… I believe things will work out. My participants for my study will come, and I will be able to get all this homework done. That does not mean though that I do nothing, I have to carry my weight and do my part. But there are just some things in this universe that I cannot control…and for those things I have trust, I have faith and I have hope that all things will work out for good. I might not see that good today, tomorrow or the next day but I believe things will be good.
So despite my pain, my horrid, tiring, exhausting, pain….I am going to get back up and go back to the paper I was working on. Because I planned ahead I can do pieces here and there and still get something quality turned in on time! Focus on something, and get back up…we are waiting on you!
It seems like a misnomer ..since I really didn’t take a “break” but it was nice to at least be able to catch up on things and get some things taken care of over “Spring Break.” I was thinking today of what the next 8 weeks will hold….planner me! I will be in San Francisco….working on a major final research project…working on editing a research project I did hopefully for a journal….and keeping up with class/regular homework! And I think it suffices to say that April is probably one of my busiest months at my job! Many hats will be balanced…I am praying for strength, ability to balance, and for rest so that I will successfully and safely make it through this semester.
As I have mentioned many times on here…I struggle to balance. I get bursts of energy and end up doing too much ( ahhh you know!). But what I have to do is take my time, rest when I need to rest, take naps, and make sure I get adequate sleep. Despite that I also need to be confident in what I am doing, but above all stay focused on the path God has for me. I started a new Bible reading plan! I love it…it is one bible verse a day…and a short devotional. The best part is that it is on my Ipad/Iphone so I don’t have to be at home to do it! Reading the Bible brings me peace…and MANY days despite how hectic it is..I love I can find a moment to find some quietness in the storms that come in life.
I’m nervous, on Tuesday I will be going into the classroom requesting participants for my FIRST research study. Talk about being nervous!!!! Ahhh!! And then on Wednesday the 27th…I will be teaching a chapter for the FIRST time to my cohort! Wow! So yes a lot of firsts….and I’m nervous but you know I am also confident. I have been preparing, I have been reading, I have been editing my power point, and I will be practicing my powerpoint. God is good! He will sustain
My tip to myself tonight is ….Jo despite your Rheumatoid Arthritis, Lupus, and Fibromyalgia…you can be successful..you just have to balance and take care of yourself!
Until tomorrow
Good bye Spring break, you were not restful….but I learned a lot! I am thankful that I was able to learn a bit more about my body. I grieved a bit missing my dad, wishing I had one break where I could go back and see him. I remember my Spring Break in 2008, I drove up to see my Dad. I took my boyfriend (and now husband) to say goodbye. I remember thinking when I drove off that I wouldn’t be back until I got that phone call…that life changing phone call.
You would think after almost five years I would been….healed. But I’ve realized a part of me will always grieve my Dad. The special moments he misses, I will think of him. Moments like my graduation as a doctor….the moment I might have my own baby. There will be many moments in my lifetime….where I will have to say goodbye Daddy and hello present.
Growing up is certainly not the easiest thing to do….it is painful to say goodbye and hello. Thankfully this week, I am just saying goodbye to a week where I was able to work hard and learn a lot. My next “break” will not come until after finals!
Ahh yes it is hard to say goodbye to Spring Break but I have to…because I have to say hello to class, work, and one day soon….finishing this last degree! I can hear Daddy saying…finish….and finish right! So goodbye Spring Break….Goodbye Daddy….hello present…bello just a few more weeks and the pain will have been worth it. This semester will be over! Hang in there!
But Daddy that doesn’t mean I don’t miss you! Because I so do miss you! And I love you!
Do you ever (maybe it is just me…) wonder if your pain is real? Do you ever go….hmmmm am I nuts….am I just feeling pain that doesn’t exist??? Random right? But that is a question that I thought about today….my body hurt soooo bad! My fingers, legs, and body in general just felt hit by a car. It feels real…and I almost cried thinking about how much I hurt.
Plus I hear….wow you look great….you must feel great! I’m like wow….at least I look great! Part of me feels like the better I look….the worse I feel. But I try and cover up my pain so that no one sees it…so that I look competent…and capable. Again…the thought crosses my mind….is my pain real?
Then I think of all the people I have talked to who struggle like me…and how sometimes it took soooooo long to get diagnosed. Their treatment possibly hinder because they didn’t look like they hurt…you could not see the hurt!!!!
Is my pain real….yes my pain is VERY real! And yes I might not look in pain….but my pain is real….your pain is real!
This is our journey…to make sense of our real pain!
You know some days we want to stop and just rest….for an undetermined period of time! Like today….part of me wanted to just call it quits to the studying. No reason in particular but mostly because I was exhausted….my brain hurt, my throat hurt, and I kept sneezing. After so long working on a project ( and for me my education has been the last 10 years of my life – higher education that is) I think it is common to get tired! Maybe mentally tired, emotionally tired…much less physically tired. The physical part for me is probably harder….the Rheumatoid Arthritis and Fibromyalgia that never seem to let me forget that they are around! So yes…eventually you get tired when working on a project….or maybe it is just me!
So what did I do??? I took a breather…I slept in! I let my body get some rest that I had been craving over the last few weeks! I nursed a sore throat with hot tea…and I rested watching TV and then running small errands. I allowed myself to see that I have another day….and I will take another step….a small step but yet a step toward the future and the finishing of this project. The best part of working on a big project is taking small steps to getting the big thing done!
Many times it is hard to stay focused especially when tired and in pain! However, my solution is to break down the big project to small doable steps! My steps for today was to write a page for my project, to finish a draft of one paper, to edit pieces of a second paper, and to edit a powerpoint. So small steps working toward the completion of several projects, a final class projects and hopefully a dissertation.
I’m off to write another page…but I wanted to encourage YOU that when you are exhausted, when you feel you cannot do it anymore, or when you feel as if the project is too big.
- take a breath
-rest/relax
-break down the project/the barrier into small pieces
- organize things so that you can complete those small steps in a timely fashion
- refocus yourself…..YOU CAN DO THIS!
- and take a step today!
