How is your weekend going?? Mine week was crazy! Monday night I was at a dissertation workshop….it was stressful…scary but also very interesting. I find it much easier to do something when I know ahead a time. Yes I am a planner!!! Then Tuesday I was nervously trying to prepare for my presentation on Wednesday. Wednesday morning, I was very nervous but remembered that I had been preparing this presentation for over a month. I was as ready as I could be to teach on my chapter. Class went well and once I felt comfortable up in front of the class things went smoothly. I really wanted my cohort to have a better understanding of ethnic identity and acculturation. It is something many of us need to know about. So then Thursday flew by because it was one of those crazy days at work. I worked late into the night in my office, Molly doing her bests to stay occupied. She was a little bored of my study life
Friday I rested a lot, probably more than I should have but it had been such a busy week. I did get out and enjoy a hockey game, sadly we lost, but it was still a lot of fun. Today though my plan is to write, write, write….I want to get a lot done! Great goal right! I have realize that we can plan, plan, plan but sometimes (many times) things do not work that way in life.
I was also wonderfully surprised last night by being notified I was admitted to doctoral candidacy. I almost cried…last year was soooo rough. I thought when I started working on my doctorate that I was prepared. That I could totally handle the study load…but you know (and you can read those blogs) last year was tough. Probably the toughest thing I had ever done. But now I realize it was worth it. It was worth the pain, the tears, the sleepless nights. Why?? Because I am one step closer to being done. One step closer to saying that I successfully finished a doctorate program WHILE at the same time living with Rheumatoid Arthritis, Lupus, and Fibromyalgia. I’m still amazed I have kept going….but you know I also realize my strength, confidence, and determination comes first from my faith and second from my dad. I want to make my dad proud, I know he won’t see me graduate but I hope that he would still in some way be proud of my accomplishments. First and foremost my faith though has kept me going, I do not think I could face my day to day journey with out my faith.
Living in pain, daily torturous pain….is so hard. Goodness it gets soooo sooo sooo old! And I think the hardest part is people do not get because they cannot see it. I think my constant prayer is that more people open their eyes to see my invisible pain. It would help that is for sure!! But off I go to do more homework Enjoy a wonderful Easter weekend.
I was sad to learn that Dr. Jackson died on Thursday afternoon, we were her last cohort selected during her life. Such an honor to carry on her legacy through the generations to come. I learned A LOT at this conference, and I am still learning! I am learning how tough this life is going to be with RA/Lupus/Fibro….I was amazed at how much energy a conference takes!!! Seriously so much pain and now sickness!
This choice of career is rewarding, amazing, but wow gosh….someone said they would rather do a residency (MD) that go for the PhD/EdD! While I do not know how true that is (and I doubt we can compare) I was shocked!
It is so tough living with an invisible disease, from the side effects of the drugs, to the fatigue, exhaustion, pain and frustration of limitations…it is like WOW! We have a different life! Our new normal…is tough but I am THANKFUL that for today…I can still do what I love.
Honestly, I have more than many I know! I can still walk, and go to work! I can still go to class and work in my research. I treasure those blessings because one day I might not be able to do that, and so I def. treasure these days!
I am THANKFUL for what I do have despite my RA/Lupus and Fibro! Thankful for the Affordable Care Act that is giving me hope of insurance (cards should be here any day!). I cannot wait for 12/01! Making appointments SOON!
Here is a link to learn more about Dr. Jackson (http://www.ucea.org/home/2012/11/19/honoring-the-memory-of-barbara-l-jackson.html)
Since Thursday I have been struggling with a fever, sinus headache, cold, and sore throat. It is like wow…my body just said “HEY YOU ARE DOING TOOOO MUCH…..TIME TO SLEEP!” Granted I was not happy..this was the week that I had a speaking engagement tonight (was), I have to present my finding on my research to my class via a meeting on Wednesday and then Thursday I fly to Denver! I’m like REALLY THIS WEEK!!! REALLY!!!!
But you know the more I think about it the more I realize ….balance is key! I wasn’t too balanced the last month or so….living, breathing, sleeping statistics…and my research. And my body was like UMMMM yah this is not working for me! You would thing since I have had RA/Fibro/Lupus now for about three years I would KNOW how to balance….but I am still learning…still have not gotten there YET!
Maybe because like many people (or I would think like many people) who have these invisible diseases….we deny it. We say we know what our bodies can handle but then we have one good day! And by one GOOD day…we can actually get up with a little less pain, we can actually do our laundry AND fold our laundry! We can take a shower AND put on our make up! We can go to work for a few hours AND come home and not need a nap! Things like that make OUR days but then we sometimes forget and tend to push on with out a break ….at least I do (did).
The last few weeks I have been pushing on with out my normal nap in the afternoon! Yes I have been on a scheduled nap for a while now…I would go to work…come home, take a nap and THEN do some homework. Which I did ok with for awhile but then I had “SO MUCH TO DO” that I would not take a nap…and just push myself to stay up and do my homework. By the time I did lay down for a nap I was exhausted…beyond my “normal.”
Which that gets me to “my normal” what does that mean??? For me I define my normal as being able to get out of bed, get ready for work, go to work for a few hours a day and get my homework done. Granted this is all done with pain, exhaustion, and fibro fog. So def. not the “normal” that non-fibro/RA people feel. I miss my energy more than anything else…the fatigue/pure exhaustion makes me feel like I have non stop mono and then some! So when I say I about 75% of my “normal” that means a lot to my already exhausted and pain filled body! I am hoping by tomorrow I am up to 90% of my “normal.” Even though it irritates me to have to say “my normal” but honestly I tell myself…acceptance will help me get through this journey easier.
My counseling background screams in my head——acceptance is part of grieving. I have to accept and move on on…but at the same time denial is part of grieving too. Will I ever “get over” my RA/Fibro dx???? I think probably one day….maybe…. Will I still struggle with denial of it….NO DOUBT. Will I struggle to balance….probably but my hope is I get better at it as I mature!
In the US we are going through a month of thankfulness! I am thankful that I live in a country now where I can get treatment. I am thankful that I am able to share my feelings about living with this disease. One of the main reasons I started my blog was to get out what I was feeling….Lord knows keeping all of this inside…ouch! And then I also wanted people to know wow we can live…it is a different life from the “normal” people but we can still live. And we can connect and we can share our lives! To know someone else out there KNOWS too …wow for me that is golden!
So I am thankful I can share my life and know I am not alone!
I am thankful today for my 75% of my “normal” and I hope that tomorrow I can be closer to 100% of my normal! I am looking forward to Thursday! I cannot wait to share pictures of Denver, my FIRST doctoral student conference and meeting with my fellow Barbara Jackson Scholars! The good Lord has blessed me and I cannot wait to see what will happen!
I still struggle to call my RA/Fibro a blessing…maybe one day! But for today…I am thankful I took yesterday and today to rest and let my cup re-fill! Balance… I hope to learn to do it better!