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!
Sometimes my first thought some mornings is…how in the world am I making it through today. Kinda sad right but for me…mornings are so rough. The pain and the fibro fog ….make it just an act of congress to move out of my warm bed (typically because I probably just fell asleep!!). But I do get up and I push myself to focus, to drive to work, to do homework, and to function. But I can definitely feel myself doing much better afternoon..and much better in the evenings. Kind of an odd thought but I could not help but wonder…what would the day be like if it always started at noon!
If you are curious to know even more of my randomness, check out my facebook page http://www.facebook.com/stlralf (support those living with rheumatoid arthritis, lupus and fibromyalgia). I love the acronym RALF It is just random highlights from my day, sometimes they are pretty funny…depending on how insane my fibro fog is.
I love sometimes just sitting, listening to music, and thinking about life. Sometimes it is good to think of where I have been, where I want to go, and the path to get there. You know when I was younger, I always said…I would go back and change a lot of things about life…but now that I have matured…I think those things have helped make me into the woman I am today. Granted the changes in my life have not always been met with a smile ..too many times the changes have been met with anger or usually tears.
I know when I first found out I have Rheumatoid Arthritis…I was so angry …and so upset at the same time. I was only 23 years old…planning life. It took a while (more like a few months) to finally be alright with this disease. It took time to get to where I wanted to see what good I could do with the illness instead of just focusing on the bad. It took awhile to get the courage to tell people, who constantly kept saying “I will pray for healing”, that I would pray instead to pray for me to be positive and use this for good.
Through my RA (and Lupus) journey, I have learned about strength, perseverance, and determination. I have learned who my true friend are and I have learned how important it is to look at everyone as if they might too have things in life that no one else can see. I have grown up and for that I am thankful!
When Fibromyalgia joined the mix…I won’t lie I was even more unhappy thinking that wasn’t RA/Lupus enough? But you know again, I have seen so much more realizing that I (and many others) despite how great we look…might have serious pain. I realize that my Fibro fog is real…and there are things I have to do in order to be successful despite the fog.
So the passing time has shown me there are many things I am thankful for but I am most thankful for the growth I have seen in me.
First day of Spring Break!! YAY! Of course my first day had to be one when I was sick to my stomach all day and curled up on the couch from pain! Really?? Well not that day I would have wanted but at least I got to stay at home and catch up on some shows…including Dallas (just hit Netflix!!). SCORE! So I have a whole schedule of homework planed! Although today was my ONE day to do ZERO homework! It feels great!
Tomorrow I have some reading to do, a powerpoint to work on, and then a paper to edit. My IRB‘s were approved so that means after Spring Break I can start working on my project! YAY! I’m excited…nervous..scared..but thrilled to be getting to this point in my research. I also will be presenting a chapter to the class on the 27th! WOW! Another ahhh moment but again working on my confidence and of course making sure I’m ready.
I have realized how Rheumatoid Arthritis impacts my eyes….my eyes are soo dry (officially Chronic Dry Eye —-I think Sjogrens). I wake up every morning and my eyes feel like sandpaper. I’m walking around with drops all the time and I have noticed that my vision is changing . Isn’t that sad! It is just another note to people who go “oh that is just arthritis.” Rheumatoid Arthritis is NOT just ARTHRITIS! It is so so so so much more!
My Fibromylagia decided to not be my friend today either! Don’t you love waking up in the morning and your hands/feet/legs have such pain!! Ahhh oh pain please leave! I think somedays that is my thought from the moment I wake up until the moment I go to bed!
But you know it is encouraging that despite pain ….people are accomplishing so much. I have met such inspirational people….people whose stories are so incredible. Maybe one day I can start sharing their stories….I will say those of us with RA/Fibro/and ever other invisible disease….we have strength! We fight hard!
Time just flies….at least that is how it feels to me! I’m working on so many different projects and for some reason I am sitting here just thinking…wow time flies! But you know one of the best thing someone ever told me was that time is going to fly by regardless of what you are doing….so why not let time fly by and you complete a doctorate degree in the process. It sounded….so cool at the time…now I’m realizing yes it is cool but it is also…..very tiring!
I was up until 2a.m. this morning…waiting for sleep to come…and partially because I took a late late nap. For some reason yesterday I got home and my stomach hurt so bad (nausea ..thanks Arava) and I just needed sleep. I got about 3 hours or so and then I managed to get up and work on some papers. I am sooo happy that today I am off work!! YAY!! It was a surprising day off…and one I am taking full advantage of! I slept in until about 8:00a.m., took a shower, got ready for the day and now I’m working on editing my homework. But yet time seems to still be going by me soo fast!
While I was getting ready this morning I could not help but think about how slow I go now with my Rheumatoid Arthritis. My hands do not work as well as they used to and I just do not have the same energy level. I was thinking back to when I was a kid and I could run around and do things. I would pay major money to wake up with energy. Most days I wake up and I feel as empty on my energy level as when I went to bed! Ugh…thanks RA and Fibromylagia! Ya’ll are soooo not fun!
So if time feels like it is running by you…know you are not alone! I hope that this week…despite how fast it seems like time is flying by …that we stop and appreciate the good things. The good people that encourage us….the friends that stop and check on us…and the encouragement we receive by the many on our social media sites! I know I’m thankful for the people that check on me…that encourage me…and that stay connected to me.
You know when I was a child I think the concept of “being focused” did not click in my brain! I woke up, did my think but did I have a goal? Did I push myself through thick and thin? Did I aim for something or focus on a project for years at a time? Probably NOT! Even when I started college I certainly never can remember going…hey I’m going to go to school and earn a doctorate! Education is not really a “thing” in my family…which is fine…education does not have to be. I know MANY successful people that have excellent careers with out the college degree!
I think maybe I was a sophomore or junior in college before the hair brained idea creeped into my mind of why not complete a masters/doctorate degree in ______? And I say _______ because even what I thought I would earn a Phd/EdD in has changed! So definitely not my focus…it just sort of happened! I found something I was good at ….something that challenged me. Something that I could say for lack of better words…focused my life! Now living semester by semester is “normal.” And I can complain/whine about the studying, the lack of sleep and how much studying takes away from my “life” but at the same time….(and I think you know this) I would not trade it for the world!! Academics has made me who I am today…not that it takes an education to make anyone but education has helped shape my thinking, my dreams, my passions, and certainly my writing!
Two years ago today I was sitting in a hospital bed…extremely sick…tired…cranky and determined to give back to this disease and push others forward. If I have learned nothing else in the past two years…I have learned to give everything I have to go and earn an education despite the setbacks of my Fibromyalgia and my Rheumatoid Arthritis. Setbacks there have certainly been…sickness, sore throats, mono, fatigue, brain fog…and the never ending pain! But still…through persistence, through passion, and through focus have my dreams continued. I only hope that I am blessed to finish this journey! I know I will will be so happy to walk the stage for the last time! I hope in my heart it happens but I also know that if it doesn’t…for the various reasons that it might not (mostly health related)…I would not trade what I have learned through this journey. I would not trade it for the world.
So focus…I have learned the value of being focused these past few years! I am excited to see what else I will learn through this journey!
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
-break down the project/the barrier into small pieces
- organize things so that you can complete those small steps in a timely fashion
How many of you are planners??? I am an OCD planner…living with multiple calenders/date books/online gadgets etc. Yes I love to plan…but this week I lacked in planning. I did not adequately plan rest into my day, and so today (since yesterday) my body has struggled to function. It is amazing what your body feels like when the pain soars because of lack of rest! I know this…I have experienced this before BUT yet I still often forget how little rest brings great pain! Rheumatoid Arthritis and Fibromyalgia bring havoc to our poor bodies, and when we get little sleep….the torture escalates.
So now I”m planning rest into my weekend!!! I want to get ahead in classes and I hope to do that one short assignment at a time! Time management…it is amazing how well our minds know what needs done but how sometimes (at least for me) the last thing I want to do is manage what I am doing. I want to be superwoman, I want to go go go….and yet I cannot physically go go go! I have to rest! Maybe after yet another experience of little rest…maybe I’ll get it
It is one thing to lay in bed and listen to rain….it is another thing to have RA and Fibro + having to work while it is raining outside!! Today was a major milestone for me (well not specifically today but since last week actually!). I am back working full time hours for a while…and I am learning a quasi (mostly) new job! Today I learned that more gets done when effective communication is used and I learned that my body can work a full day but in the evening I am very tired!
As I rested briefly tonight I realized that I had flashbacks of completing my master’s degree program! I worked full time and studied full time! And yes it got done! Plus I was at the beginning of my RA/Lupus/Fibro treatment (dx in 2010). Those flashbacks were a tad painful – the lack of sleep, the never ending feeling of being exhausted, wanting to sleep all day, etc. etc. But I also had amazing memories…like knowing things were getting accomplished! And now even more importantly I am about a year and a half away from getting my coursework over!! I just have to keep focusing on that small goal! And then another year and hopefully the dissertation will be done!
It is all about small goals! This I have learned! First first small goal is to finish this semester! The second small goal is to get one or two conference presentations ready to go (meeting with prof at the end of the month!). And I have a few more goals but for now those are what I am focused on!
I’m hoping the pain in my fingers will stop soon! My thumbs hurt sooo bad! It is annoying, more than anything…constant pain gets really really annoying! And then the fatigue….right now I am sooo tired..but yet at the same time I know I have so much to do…I cannot really rest/take a nap! So I am going to get some stuff done tonight and then I will curl up for the night! One step at a time!
RA and Fibro do not have to win tonight…in fact I don’t think they will…but I do know they are dragging down to a much slower speed! That slow speed is what is annoying but hey at least things are getting done..speaking of..off to get more homework done I go!
Wow today was the first time in a LONG time since I have worked a full day (we are talking like 9+hrs!). My body is telling that it is NOT happy with me! I have been working on my edits for my proposal and my paper that is due by Wednesday night. Now I am waiting on the second line of edits for the proposal and then I’m hoping to submit my other paper tomorrow. It is as good as it is going to get…I think! I Hope!!
I practiced my presentation again twice tonight! I feel comfortable with the material and I hope that I can hold it together and do a good job at my presentation. I am excited to be going to another conference! I think it will be a lot of fun and unlike Denver..my WHOLE cohort will be there. So we are hoping to have fun, learn stuff, practice our presentation skills and enjoy some time with other students and faculty.
I realized last time I went to a conference how cool it was to talk with other doctoral students. Why? Well they get the crazy nights, the papers, the projects, and the drive to finish our dissertations SOON!!! Gosh I cannot believe that even after my coursework, and comps that I will have another year or so to write and CONDUCT a study! Whew!
Well I am hoping that my proposal goes through (crossing fingers)! That will be major stress off my shoulders!
Oh good thing today…I was actually hungry!! I’m not sure if it was because I was working all day?? Maybe?? I don’t know but I was hungry! It would be nice to have a better appetite. Not eating for a day had me worried…but then again with then nausea that comes and goes..what can I expect.
To finish my long day, I go back to what I was thinking this morning…STIFFNESS!! Yes one part of Rheumatoid Arthritis that I hate…the morning stiffness! Some mornings I get SOOO exhausted just getting out of bed and getting dressed (don’t even talk about getting make up on). And then a lot of times my Fibromyalgia decides that it wants to act up too!! LOVELY! So yes my thought this morning as I was driving home was “wow my stiffness is still there!” My hands more than anything but I think that is because I have been typing typing typing the past few days. My shoulders and wrists too are mad
But oh well…despite my long day..I got some homework done!! And now I’m stopping for a breath!