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!!!
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
It is such a great feeling to say that SPRING 2013 is DONE!! The last paper has been submitted to my professor…final grades are to be posted by the 13th…and now I can come home tomorrow and say I”m done! My goal is to rest for a few days…to regain some of my energy and then back into the research I go. I have to prep a study for publication and conduct a few more statistical analysis. And then I am prepping this study to go on to round two. I also want to find some good quantitative studies for a secondary analysis project. So yes a lot of things to do but it is nice to do it on my schedule and not on a time table for class.
The summer holds a second round of statistics and an internship class. Both will keep me pretty busy but I hope that they both won’t be as hard as my first summer in the doctoral program. Boy was that rough! If I keep my nose in the books….I should be ok… I hope!!
I am proud to say I’ve finished this semester…despite the Rheumatoid Arthritis and Fibromyalgia. You know the days that are so hard to get up…the days that just getting dressed and brushing my hair…those days where just doing those small things is just unbearable. The lack of sleep…the studying…it is good to know that it is worth it. This time next year I will be finishing my VERY LAST class! YES my very last classes of more than 10 years of studying! WOOHOO!! That is a major plus…that is what keeps me going!
So tonight I am off to rest and relax…so very thankful that I managed to finish this round of classes! I did not do it alone… I did it through the love and support of my husband, my closest friends…and of course my Molly, Precious and Pepper! If you think because you have RA and Fibro that you cannot have a life…you are mistaken. It will not be the life you want…it will be a painful life…but if can be a life that you still accomplish your dreams. One slow step at a time! I encourage you to remain focused on something that gets you up in the morning! The days you feel so alone (because yes we ALL have them) seek out a friend (email me) and get through that dark hard day. We can still change the world! We will change the world despite our INVISIBLE ILLNESS!!
#spoonie, #squeaker, #fighter, #Icandothis! And much more! Tonight is to us…we all fought this road together…congrats to finishing this semester, these past few months, the past few years…lets see what the summer holds for us!
Almost to the finish line!! I sat in my last class of the semester on Wednesday…boy did it feel good to leave the campus and know I wouldn’t be back until June!! Now I have finished my first draft of my completed paper that I will be turning in on Wednesday. I have a few more corrections to make to it and then I will turn it in for a grade. AND THEN I will keep working on it…getting it ready to get it journal ready and ready to add more to it over the summer. I have already contacted people to do round #2. YAY!
I will also be working on my first study to get it journal ready. I have to redo some tables and cut/edit/add a few things. My goal is to have it ready for a conference proposal that unlocks in May and closes in July. I want to get that in!! AND THEN off to work on another proposal that is due in September. YES a busy few weeks before classes begin again.
But before then I will get this paper finished, and off to my professor. Then I will take a night or two to rest!! My hubby and I went to celebrate at Outback last night. It felt good given the hectic day(s)/weeks we have had this semester.
It is is soo nice to be home and sleep in my own bed. Although I don’t know why but for some reason I kept thinking that today was Monday or Tuesday..not Wednesday. It is amazing how a change in your routine really makes it difficult. Tomorrow thought will be my last “full” day of work for this week YAY!! And the good news is that tomorrow will be a slow day. I can sleep in late and leave work early in the afternoon. So I can sleep in and take a nap!
My goal for tomorrow is to rest and work on getting my paper written…I have to add the preliminary themes. Then I will work on getting into a few more classes this summer to see what students might tell me using my same interview questions. I definitely want to encourage credibility and rigor within my study.
That said, I am home from my last class of this semester! YAY! I have to turn in my paper by next Wednesday (so I have a week) and then I have an awards banquet on Friday. Then to work on my first study some more, I want to get two conference proposals ready before the summer begins. Yes a busy few weeks but I am hoping to enjoy some down time too.
I’m off to rest…my body is in a major flare. Too much going on I guess! Hugs and spoons!
Can I leave my heart in a city I just met? Can I fall in love with the hustle and bustle of a city?? YES!!!!! I flew into San Fran on Friday, my first time to the west coast. Let me say I fell in love!
I fell in love with the businesses the streets, with the many different languages and food choices. With the thoughts and conversations I had with the people. I loved eating Thai food or sitting in a dinner. The architecture was just amazing. I drove up to the Twin Peaks and saw the gorgeous city below me….I saw the Golden Gate and the Bay Bridge. Wow, I pictured myself taking the BART and living across the bay in Oakland or Berkley.
The hills did not agree with my Fibro or my RA…I flared majorly. Probably in part to all the walking and the nights were cool. But despite the fatigue and the pain….I love the city.
One day I will be back!
I am now waiting to board for Houston…home here I come!