The first week

Today marked the first week of the Fall 2014 semester! It felt so good to spend my Wednesday….NOT in a classroom but at my ladies bible study. I have missed going these past two years! Granted I was also sooo tired. I wondered how in the world I made EVERY SINGLE class these past two years. I NEVER missed a scheduled class session! I realized that…never once did I miss a class! HOLY COW! It reminded me of my freshman year of college….I never missed a class that year either! Although by my junior year…I was good at making use of my excused absences 🙂

I hope to post awesome news on Friday!! I see my current rheumy! I am praying and hoping that this appointment goes well. I hope I walk out of the appointment with a bio med either in hand (oh wouldn’t that be awesome) or at least strides made on it. I am hoping for courage to stand up for myself and ask for what I need regardless of his attitude. And I also hope that I have the necessary intuition to make the best decision for me. These decisions include the best medicine for me, and a clarity as to whether I should stay or move forward with seeking a new rheumatologist. The new rheumy (would be rheumy three) has an office about an hour or so away from me…it would be a drive….and this rheumy does not have privileges at a close hospital. But I do believe a working relationship with a rheumy is critical to successful treatment. So keep me in mind on Friday! I hate the thought of walking out of the appointment frustrated, angry, and yet again with no new medicine….however, I am also telling myself that if that happens…I have another appointment scheduled for the 15th of September with a new rheumy. So that isn’t too long of a wait…but still it is a wait…and I am so miserable in pain right now. Send happy positive thoughts and prayers up for me on Friday!

I’m off to code some more data!!

Peace

The semester starts tomorrow! First dissertation semester for me! Hopefully only one of two dissertation semesters! (Lord willing)! 🙂 I also start my bible study this week, Wednesday will be my first night! I am praying that I make some friends and learn some great stuff!

I see my old rheumy (I.e., rheumy number 2) on Friday! I’m praying that I make headway on a bio med. I know now that I need to have either Enbrel or Humira….before I can go for Orencia. I’m praying that I can start something soon! Pray with me that the appointment goes well!

Off to rest for tonight! The past three weeks have been nuts. I worked a 55, 60, and 50 hr week! I had to rest this weekend….my body was exhausted! I pray this week will not be that crazy!

Reminder

An important reminder for me that I thought I would share! So many things are going on in our lives…things are crazy…and so on! I have learned that we have can the BEST plan ever….and it usually never happens that way! We can plan our schedule of life events….but then something unexpected happens…and things change. For some Type A people (like myself) I like having that control and I like being able to think….”wow I have it all worked out.” BUT I am so thankful to be reminded through my faith that I can have peace. Does it mean that I jump for joy at the change of life plans…nope! In fact, my husband can attest that it stressed me out like no other! BUT I rest in the knowledge that I DO NOT have to be anxious! I hold to the word of God and the peace that comes through prayer!

I say all of this because as I look at the past 11 years of my life…I have graduated from college and graduate school! I have completed all the requirements for my doctorate except the completion of the dissertation. And I’m to the point that I can see the light at the end of the tunnel! My goal is to have a “draft” of my first three chapters due to my committee on the 1st of September. Although I am also very aware that my proposal date/defense date is at the mercy of my committee. Do I have a schedule in mind (OF COURSE!) But most importantly I want to have a quality research document that is appealing to publishers! I would rather take an extra semester to add the critical pieces that are necessary for this very unique area…than run through it all now..graduate with a piece of work that isn’t worth being shared! Does the lack of control irritate me..YES!

Then again…I haven’t had control of a lot of things! I have made it this far with Rheumatoid Arthritis, Lupus, and Fibromyalgia daily setting limits I didn’t expect. I’ve battle through hospitalization and major health crises, and additional health concerns due to the autoimmune suppression for the RA/Lupus (i.e., heart problems, breathing problems, etc.). As I was telling husband this weekend….If I can say that I graduated with my doctorate with all these health issues (i.e., RALF) and I did it in 12 straight years of going to school… I call that a MAJOR win! Heck if it takes me 13 years..that is a MAJOR win! I always told myself I wanted to graduate as a Dr. by the time I was 30 years old! I legally turn 28 in about 1.5 months….I “cross fingers” that goal will happen!

Thank you all for your encouragement! I need it! 🙂

Philippians 4:6-7

Philippians 4:6-7New King James Version (NKJV)

6 Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; 7 and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.

New King James Version (NKJV) (https://www.biblegateway.com/passage/?search=Philippians+4%3A6-7&version=NKJV)

Wedding!

This weekend was crazy! Actually most of last week was crazy! This time of the school year is always insane! Long hours happen at work….two days last week were 11 hour days and one day was a 14 hour day! And even some work on Saturday. Exhausting! Very exhausting!

This week will be just like last week! I have so much going on and so much to do. It is going to be nuts! So I am determined to rest as much as I can. I know they I am easily fatigued especially will all the LTBI meds. I go back to the lessons I’ve learned over the past months…one of the most critical lessons being ….balance!!! I need to rest, sleep, relax, conserve energy, and write my dissertation! I am up to the quality revenue, qualitative analysis, discussion, and future implications for my last chapter (of the proposal piece)! The downside of all this work is that I’m exhausted when I come home! 😦 however my goal is to do an hour or two of work every night this week (with one night off)! I also have a goal to work on my dissertation all weekend! I need to get this writing done and will it be hard…yes!!! But I am determined! It will get done, I’m seeing the major need for self discipline! One way I’m working to stay on track is to make sure I’m getting to bed early (by 11:00pm) so that I am more rested in the morning. 🙂

And more positive news! I was approved to see a new rheumy! While I do have an appt with my old rheumy next Friday….I went ahead and requested a new referral. I’m hoping and praying I walk about with a new medicine next Friday but if I don’t I’m afraid that I will be chasing my tail again! I know I did not go through all these LTBI meds to not be able to get on a biologic! Praying for my next appointment! Praying for a positive experience!

I’m off to rest but here are some pictures of my friends wedding that I just got home from! She is so sweet and is so beautiful inside and out! I wish her and her new husband a wonderful future together 🙂

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Ready for the week?

I’ve been asking myself that very question….I sure hope I am ready for the week! This week is my last week to plan a major event I’m hosting this coming Friday! I have done so much work! Literally Wednesday I barely stopped I was so determined to get stuff done! I hope this week I am able to stay level headed and focused! I also pray that my energy holds up!

For some reason, not sure why, my LTBI meds have made me extremely nauseated this week! I was so sick this weekend…I was miserable. Even tonight I’m struggling with nausea…so a major prayer is that I wake up tomorrow able to make it all day!

I also hope I hear from my PCP tomorrow! I called for a new referral….this mess of trying to get a bio medicine is getting ridiculous. I would love to not have to get a whole new rheumy but if I need to do that, I will do what I need to do. I hate the whole process of starting with a new rheumy but I’ve been working to get on a biologic since April/or change to a better medicine….neither has happened! I see my rheumy on the 29th….if I walk out of there with more chasing my tail…..then I’m going to have to find a new rheumy. Even if I have to drive for miles…I will do it! Honestly our diseases are too critical to ignore or to wait to address. Bad rheumys are out there….disappointing but true! I hope that if nothing else this experience will help me have nuggets of wisdom to share with someone else who might need some wisdom!

Xo let’s have a great week!

Ps up to 81 pages on my dissertation proposal! Another 20 pages or so to go and I can send it in for a first draft to my chair. I hope to have all pages/my edited draft due by the 27th!

My cuties that keep me going on rough days!

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The ring

You know one thing I realized tonight that I sometimes take for granted-a caring spouse! We often talk about how we feel, our pain, sickness, nausea, etc. But how often do I put myself in my spouses shoes? I think about how it must feel to see the person you love suffer….every day all day? What is it like to care take so young and perhaps so young into a relationship? I was blessed my husband and I were together 3 years before we were married, 6 months married before I was officially diagnosed. I think of the many men and women who get their diagnosis early in life before they can maybe do all the things they want to do. Entering a serious relationship when chronically sick is def hard. So tonight I say a huge thank you to my husband for all that he does for me! I realized today sometimes we have to remember….the ring!

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Me Day

Sometimes the hardest part of handling life with RALF (Rheumatoid Arthritis, Lupus, and Fibromyalgia) is getting the rest that I desperately need. Up until now I have not only worked a full time job, but I have also been a full time student. Now that I am only on dissertation hours, I am determined to work at getting more sleep at night. These past two and half years of coursework, have been filled with nights of sometimes three or four hours of sleep (sometimes less). That has left my body exhausted! I think getting more sleep at night will help ease my pain as well as hopefully lessen the issues with Fibro fog.

I have managed to get off of my Lyrica completely! I miss the pain relief I got from it…but with my newest heart issues…it seemed to be the best decision. Granted the pain flares are so bad…but I am still holding to finding more creative ways to endure. Since I am also allergic to most prescription pain killers with codene, I am limited in ways to get relief from medication. That is definitely one reason I am hoping that soon I can get on a biologic or other RA med that will bring more relief.

So since I am trying to bring a bit more balance to my life, I used my last personal day I was going to lose this fiscal year…and decided to stay home today. To rest, relax, watch tv, listen to music, of course write a few pages on my dissertation, and play with my furry kids. These next few weeks at the office (through mid-September) are going to be chaotic as I am planning major events. And of course once September is here I will be working on another event. And by the time that event happens, there will be another event in October…and yes before I know it….the year will be over! Hard to believe time travels by so quickly. Some days I yearn for being a kid when it felt like the year NEVER ended! 🙂

I’m off to write, relax, conserve my spoons, and enjoy a day at home!

XOXO 🙂

Three Small Words

“hang in there” These three words for some mean nothing major yet for others….it is what we need to hear to make it through the day! Today ideas brutally reminded of now much pain I feel when the weather turns rainy! Major mind-numbing pain that would not end. To the point of a major pounding headache. Days like tonight I realize I could push myself to write…but then I wonder….would that writing be worth anything? I realize nope! High chance I would have to redo! So instead of pushing myself….I rest. I do small things like brain storm updates for my resume and think of cool things to do online. Such as learning Snapchat! Haha! I read an entire Maire Claire!! Things to relax my brain do help me count my blessing through the torture…yet I do wish it was someone else living this painful life. Until I realize…..all I have learned! I wouldn’t be the person I am today…had I not faced the journey of the last 5 years! This journey has made me who I am today, for better and for worse. I have grown up….I have felt unimaginable pain….I have dealt with countless frustrating months battling for treatment/good doctors.

But I have learned to advocate for myself! I read a great story in the July issues of Maire Claire. There was a woman who had experienced a tragedy, she said that you don’t bring to heal until you talk about it. Holding your pain inside doesn’t bringing thr peace and healing we long for. I know I held my “secret” inside for months. I didn’t want people to look at me differently! I didn’t want to be “that girl”! It wasn’t until I spent 2 weeks in the hospital that I realized I couldn’t do this journey alone. The medicine, the autoimmune suppression…all of it….I needed support. So I started seeking out people who could (selfishly) help me cope! That is how this blog started.

And as I have grown up, I have realized too often I am afraid of being seen differently! And I realize if I don’t speak out…..the world will never know that yes we do struggle, yes we do hurt, yes we are miserable physically (and sometimes emotionally)! BUT despite all of that….WE LIVE!

In the dedication of my dissertation there will be a paragraph dedicated to the fighters I have talked to, to the fighters who read this page or my Facebook, and to the fighters I might never know were touched in some way by my stories. I will dedicate my dissertation to you, passing the baton to the next chronically ill academic!

Our illnesses don’t end us! Our dreams and goals don’t have to stop! I am determined to advocate not only for myself but to anyone who will listen! I want people to know that my life with Rheumatoid Arthritis, Lupus, and Fibro is tough! Yes painful, miserable many days, draining, etc. But above all of that I want to encourage others to live! And make those who don’t know our diseases to become a bit more aware!

Hugs and spoons! 🙂
The chronically ill academic 🙂

Spoons

I have to share this awesome site. You hear so many of us talk about our “spoons” and many wonder what that means.  I think this author (http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/) did an excellent job trying to share visually how our lives is and what we feel on a daily basis. While we don’t have “real” spoons, we do all feel that there is only so much our precious energy levels can handle. I know I for one don’t wake up with energy, I wake up with pain. I wake up almost 2 hours before I need to walk out the door because it takes so long to get moving, get dressed, do my hair and make up. It can take several hours before I feel awake and ready…but remember most of that time…I’m at work putting on a smile, answering the phone, etc.

Too often we have to put a smile on our face, and a put on an academy award winning performance.  You really don’t know what fatigue is until you experience it…it is beyond regular tired, it is beyond flu-aching and tired, and it feels as if you have run miles with out stopping. It makes it working, living, having a family, etc. so hard! But you know there are hundreds of us who fight this very battle every day.

And for those of us who struggle with this disease, your reading the “Spoon Theory” helps us know that you want to try and understand a bit about what we face every day. For people looking outside in….it might seem as if we are lazy, unpredictable, undependable, and many more words. I know I feel that way….I hate making appointments because 9/10 times I might not be able to make that appointment. I struggle to make evening events on days that  I have been working, making it difficult to go on dinner dates (even with my own husband) or bible studies at church. Even making it to Life group or service on Sunday is tough because I really don’t know until the morning of whether or not I will actually be able to make it. Some days (most days) I push and push to have that “normal” life, one day maybe that normal life will happen (it is great to dream right!)

Off to plan my schedule (maybe for once it will turn out that way!)…SPOONS!

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 🙂