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!

ABD

Three initials, ABD, mean much to someone who has been working toward a terminal degree. It does not mean the end (although I wish it did) but it means that a large part of the degree is finished. It is thrilling, exciting, and some what relieving! I know I was so excited to walk out of the doors of my classroom on Wednesday night. I was one of three students who worked enough this semester to do a “practice proposal.” While I still have about another 30 pages or so to added to my proposal, I am hopeful that by the beginning of September, the document will be ready to be reviewed. The term, ABD, definitely does not mean done, but it just means closer to being done. This fall, I will be taking six hours of dissertation with a goal of proposing by early/mid October. If I keep working hard I have a feeling it can happen.

That said, while I do want to work hard I am determined to make sure I am resting. Part of me feels as if I will never get on biologic meds (yes my pity party me). I have worked so hard these past few months jumping through all the hoops to get on a bio med and it seems like every time I jump there are three more holes to make it through. I am not going to know about a bio med until my September 3rd appointment. My rheumy has decided that even though he decided on Orencia, and even though his office manager was two months late in sending in my insurance paperwork (that I was told she submitted in June), that I still have to wait until my follow up appointment that I did not even know about. He is currently on vacation and no amount of pleading with his new office manager (yes his old one was fired….not surprised), she would not squeeze me in any earlier. It has been disappointment after disappointment with this rheaumatologist…and I’ve decided he has one more chance. If my Sept. 3rd appointment is another appointment where I have to do blood work, come back in three weeks, waiting for insurance for four weeks, and then do another test, and another test..then I will have to find another one. The downside is this rheumy is the closest one to my house…I would have to drive a ways to find another rheumy that my insurance covers. However, I would rather drive then spend months (I’ve been “trying” to get on a bio med since April….and I am NO closer) of my time with a rheumy who obviously does not make patients his priority.

I didn’t realize the battle others must have gone through to get on a bio med. I was told Orencia would be my first…then I find out I have to try and fail another one (Enbrel or Humira). However, I was also warned I might not be able to take too many bio meds because I also have Lupus, although I’m thinking (if I remember correctly) I can take Humira. Still…..to wait and wonder. On top of that, one reason I was hoping for Orencia is the possibility of children in the future…30’s are near and I want to know if kids might be in my future. From the research I have done…it is not with Humira or Enbrel. But I’m hoping maybe what I am finding online isn’t the most up to date.

The world of rheumatoid arthritis, lupus, and fibromyalgia….it is cruel…painful…exhausting! I wish many days that I could wake up from an awful dream where the daily pain was just a really bad nightmare. The reality is that this painful life isn’t a nightmare…it is my life. While it has taken years to slowly come to grasp with the reality that yes…my hands are going to hurt, my hips are going to feel broken, my ankles and knees are going to hurt so pain it brings tears to my eyes almost all the time…..I’m still pushing through all this pain to find something good. I want to still have a career….now that my classes are over and I’m only working on a dissertation..I do need to start thinking of what next year…what job will I do? Where will I work? What profession will be my “grown up profession?” So many things to think about as I mature these next few months….so many thoughts to organize in my mind as I consider what will happen in the future….I just hope one of those things that will end soon is this rotten experience of trying to get on a bio med. I am praying already for this September 3rd appointment…I am praying it isn’t another waste of time appointment…I’m praying I walk out of that appointment with answers…and I’m praying that my discouragement ends soon. Because yes, I do know that there is a reason….God has a perfect wonderful reason for my not being on a bio med yet. I don’t know that reason, I wish I knew the reason, but to date I don’t know the reason.

Maybe it is to teach me patience…Lord knows I am not the most patient person…and this experience is certainly teaching me that I control NOTHING and it is OUT OF MY HANDS! Maybe that is my lesson…regardless of what I am supposed to learn….I do hope soon..I see a more positive picture!

At least now that I’m not doing homework I can spend more time writing my thoughts and writing on my dissertation 🙂

Re-focus

Do you have moments during the week that you have to refocus or recharge? Do you make the choice willingly or does the choice get made for you?

This past weekend went in a blur, I came home worked three days…went to class…and then the choice to recharge was made for me! My body was sooo tired and that combined with bad Vietnamese food….landed me in bed for two days.

No not the way I wanted to spend my weekend but it was what my body needed. I’ve said many times the balance I have to live in life is a lesson I’m still learning. I want to go and go but you know my fatigue and pain stops me. I still get a lot done and I am so proud of that fact.

I wrote my Clark Scholar paper this weekend. It is now in the hands of my chair, with her help it will be edited and sent up! Wow! Then I wait until January to find out if I made it! What an amazing thing that would be to add another thing to the list! My list of things I never thought I could do with a crumbling immune system (rheumatoid arthritis and lupus), pain and never ending fatigue (rheumatoid arthritis, chronic fatigue, and fibromyalgia) and the eye side effects (Sjogrens). Trust me I do this as much for me as for you! I want no one to think life is over when you hear these diagnosis! Life isn’t over! Life can just be beginning, it has slowly begun for me! In the past two years, I’ve traveled to many conferences, become the schools SERA representative, and been the Barbara Jackson Scholar for one year, with one more year to go! Such incredible blessings and opportunities! Lots of work but all life changing!

So recharge is good! Let’s me think and most importantly I rest! Then I get up and get things done! I’m making progress on my study from last semester and on my research for this semester! Things will get done! Just don’t forget to balance!

Off to rest some more, rest today and recharge! And then let’s do some amazing things this week!

One word!

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 🙂

Back up …Again

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!

 

Stopping!

Merry Christmas! I hope today was a good day for you, hopefully a day you celebrated with your friends and family! We (my husband and I) did not! For many different reasons we do not celebrate the holidays in the traditional way. Thanksgiving for us normally entails whatever we can find to eat – pizza, Whataburger, etc. I actually cannot remember the last time we were with family for Thanksgiving. One reason I guess is because Thanksgiving was not really a holiday that I grew up celebrating in Honduras but also because neither my family or my husbands family are close. And for that reason when it comes to Christmas we tend to do our own thing – one year we were in Jamaica, one year we were in Orlando, and this year we are in New Orleans. I do not decorate, actually have not decorated since 2007, and that was the first and last year since I left home at 16. Counselors I am sure we can have many conversations but despite our way, we do hope that our friends and family had a great day! The cool thing about Facebook is that you can see all the fun pictures and read the cool stories – from engagements to baby announcements….wow life goes on!

But how are you? How am I? I hope that your pain is not as bad as mine! On a scale of 1 to 5, I am abut 3.5-4. Exhaustion/fatigue has been intense. I was rubbing my leg and it felt like needles was pushing on my skin, thank you Fibro lol! Holidays and pain, really don’t go hand in hand but the good thing is we can still have fun! We can still travel! I am very thankful that this year I was able to make the trip! I know one year I might not be able to make it :(.

One of my final contemplations for the night are the many new year resolutions. Yes it is that time of year again, we think about things we want to change and do better next year! What do I want to change or do better?

I want to be more of an advocate, living with RA and Fibro does not mean my world ends….it just means my world changes. It means that I need support such as Fibro groups (check my sidebar) or RA support groups (like http://squeakyj.com/). The days will be sooo hard, some days I cannot even get out of bed. The meds will (at least for me) kick my behind…but I still drag myself up to do something! Everyone will have a different story….their story…but the cool thing is we have each other. You can share your story and I can share my story. Through our pain we can help someone else! That is one of my new year resolutions!

Alas my contemplative brain is tired….more soon….Merry Christmas! Feliz Navidad! Have a blessed night!!!!

Ahhhhhhh

Ahhhhh!!! I have laid in bed since earlier this evening…and yet sleep still eludes me! My hips and knees feel broken…my ankles are swollen and the rest of me….well if there were words to describe it…I would use them! Yes I am annoyed…annoyed because so many people (yes even today) give me speeches on how great I look, how much I do and how I must be feeling great….because I look great!

If only those people could see the true life I live! If they could see how I can barely move, or if they could see the tears shed because my body hurts so bad! If they could sit up and talk to me because I cannot sleep thanks to my pain! But alas they are not here! They don’t get to see my anguish and suffering and so they don’t understand the life that comes with RA and Fibro. And to be honest, it is heartbreaking!

It makes me so thankful for people who do understand! Although in my face to face life…..that number is probably less than what I can count on one hand! I am thankful for E, her texts all day keep me smiling and pushing on! I love checking emails because L usually sends me stuff when she can, makes her seem like she lives next door. And R wow, she is like a big sister and she keeps me going when so many times i want to quit! I’m thankful for my husband who tries so hard to ease my pain and waits so patiently to help while I cry in pain. I am thankful for them and others who do their hardest to understand the life of invisible pain that I live with every day.

Having an invisible disease is not easy! It makes you so strong but at the same time, some days you do just want people to get what you live with daily! Yes I am strong but I need a hug and to be carried some days! For those that do carry me, thank you! To those that don’t….please try to understand me!

Don’t ignore me for months and send me one line messages about how much you think about me….when obviously if in the last 7-12 months you have done a horrible job of keeping in touch! Your actions don’t match your words! Please remember, match your actions to your words! And don’t tell me…you look great so you must be feeling better! That doesn’t help me! Please don’t treat me like I’m an invalid and someone who cannot contribute, I may have barriers in my life but I have proven to be resilient!

Yes ahhhh that’s a pretty accurate description of the way I feel! I hope tomorrow the ahhhh is replaced with a smile 🙂 again!

Painfully Resting

Today was a painfully restless day! My semester is over and while I am excited, I am still so drained! I tried to get my brain to function but that muddled brain fog did not go away.

I organized my binders and ordered my books for next semester! I tossed around in my head a few hair brained ideas and I tried to veg out on my couch.

So much to do and it seems like such little time. Today is graduation day for some eager college, masters and doctoral students. The summer class of 2012 is inaugurated today! I was a little sad and drained thinking that for me, I have a few more years to go! I hope to be the summer/winter class of 2015. Hope to be anyway!

Today I was also painfully aware of how much I missed my dad! I pictured us going out to lunch to celebrate another semester done. I pictured us laughing and enjoying the accomplishment. I pictured walking across the stage in the very same room where in 2007, he proudly watched me graduate college. I didn’t know then that he would only life a few more months.

And I think that is something we do not treasure. We do not treasure the mere concept of living day by day. Some day will be our last, but what am I doing today to leave behind a legacy! What will people remember from me? Will they remember my passion for education, my zeal for international travel and my heart to help the world? Will they remember the words I leave here or will they remember the words written in my class? So many questions like these filled my brain today! Yes emotional overload thanks to finals this week!

But one thing I do want, I do want despite my painful suffering, to be a smiling face to those I meet. Goodness knows others have far more suffering than I! I want to radiate joy, happiness, love, and peace! I want to encourage anyone and everyone I meet, for them to exceed anything I have ever done! I want them to be to heroes of tomorrow!

So yes much went through my muddled brain today! I’m thankful to change lives, I’m thankful to encourage lives! And I am thankful I can despite the overwhelming and intense pain that grips and squeezes every inch of my body! It is so hard most days to get up and walk, much less think of someone else! But if nothing else, I want that to be my legacy…what will yours be?

Relax and Take a Breath

How often do you get sooooo caught up in stuff that we get anxious/worried/frustrated??? I know that was me earlier today! I have two papers due, several discussion boards, powerpoints etc. etc. Yes we are down to the last two weeks of school and needless to say I am STRESSING!! But then you know I had to stop and take a deep breath!

Inevitably the next few weeks will go by, my worrying or not!!! I have on control over the passing of time! So what I need to do is set a plan, set some goals for each day, and REST!!!! By doing that I will save myself major stress and hopefully not cause myself any additional pain!! 🙂 That’s my current goal for tonight! If you have any advice please share!

I know my RA and Fibro flares soooo bad when I’m stressed and when that happens I am afraid my thinking cap will not work very well! Sooo off to rest some, I have work and more studying tomorrow. My current goal it to focus about 4 hours on my philosophy paper tomorrow! My ultimate goal is to have the complete 12 pages done by this weekend so I can work on the edits over the weekend. It is due by the 1st of August! So yes down to the wire!  My goal for my 29 page paper that is for my other class is to finish the final edits tomorrow. Proof it for its final reference check and then do final edits no later than Tuesday. I want it done! I also have to practice my presentation, my goal is to start doing that tomorrow, once a night for the next week. That way I will be comfortable with the information and clear on what needs communicated, gosh I only have 10 minutes!

The one thing I have learned is you are definitely limited by our invisible diseases but you do not have to stop living life. You just have to adjust! I was able to be in a wedding, hike around all day in heels but today I definitely have to rest a lot more than usual! I can get my homework done….I just do not have much extra time. But that is ok…I take one day at a time! Remembering that relaxing and resting have to make my priorities list 🙂

Slowing Down in a Slow Rainy Day

I woke up today to pouring rain outside! It was a deluge that seemed to never end. I was able to lay in bed and listen to the rain and thunder, my train of thought on sporadically interrupted by my cats howling their dislike of the rain! Oh well…I had to take today slow…my body has given me MAJOR warning signs that either I slow down or I may end up seriously sick.  I think it is a combination of the stress from class, the lack of sleep (unstable sleeping schedule) and all the pain/fatigue.  There is only so much pushing my body can handle before I just need to stop and take a breath

So today was my stopping to take a breath day! I slept in, watched Netflix and finally after being bored…I dragged my mini-proposal documents to my bed and edited my paper. I like the end result, just another sign that after every edit your end result gets better and better. I guess it is the same with our trials in life…we learn (at least I do) that after the trial…I have gained so much strength and perspective. I learn that every valley I walk through strengthens my faith, my relationship with prayer and God and the things in life that are important to me.  My life (as the constant edited paper) is definitely going to be interesting whenever I get done with school and start the next thing.

I decided today that if I manage to finish my doctoral program…I should write a book on doing so while battling RA and Fibro! How does that sound! I want people to know that just because you have two horrible painful, debilitating diseases…life does not have to end. Use your life, the time you can move and do things, to better yourself. The disease can NEVER take away what you have learned and what you have learned about yourself.

I have learned so much about myself these last 7 years I have been earning degrees. I hope to learn much more in the next 4 years while I am finishing my LAST degree. I hope to encourage and inspire people to live for their dreams…not matter the hard hand you are dealt in life. I want people to know that we can still gain our dreams despite our pain!