Tag Archives: Yes (band)

by

You ask….WHY?

Have you ever asked WHY? Why did today have to suck…not that my day sucked but I did spend all my energy getting ready this morning for church and guess what… I had a flat tire on the way to service! Seriously…and I had gotten up at 7:30 a.m. (after being up until almost 2a.m.) only to make if halfway to service when the flat happened. Then I proceeded to spend the rest of the morning in a NTB waiting room as the tire was fixed. Def. not the morning I had expected….so part of me was like why?

One MAJOR why I have had in my life is ….why God…why did I get the card that said “Rheumatoid Arthritis” and then another card “Borderline Lupus” and then yet another card “Fibromyalgia” and so on…the list continues! You know when I first got dx’d at 23 years old…I was like WTF (excuse the french!). In my mind I was thinking ok…run some more tests (like you have been doing) and find a different answer (forge it…I don’t care)! So yes that day I wondered WHY!!

But then fast forward almost a year..I’m sitting in a hospital bed…I had been there for over a week..I was angry and frustrated. I was made because I wanted to get my nails done (yes I am strange!) And then I realized…you know what..seriously asking WHY is ok…mostly for me it is letting out my anger..but  I need to do something with my WHY!

So I did something with my WHY! I started working on a blog! It wasn’t a blog that shared tons of cool information (only occasionally!!). Instead it became a blog of life…living with Rheumatoid Arthritis/Lupus and Fibromyalgia. I wanted the world to know the good, the bad, the crappy, the great and the ACCOMPLISHMENTS that CAN happen despite the WHY that we say due to our disease.

And wow…since my DX so much has happened! I finished a Master’s degree (never thought that would happen!). I successfully flew to Rwanda, Africa! I saw Africa…with my own eyes…walked on African ground…a dream come true (and yes I want to go back AGAIN!).  I applied and was accepted to an EdD program (WOW! on the first try!!). And I have managed (so far..knock on wood) to go to class and pass the classes! AMAZING!! And wow God blessed me even more by being named a Barbara Jackson Scholar! WOW!!! DOUBLE WOW!!

And next week I will be going to present at my first conference! WOW! Yes I am nervous but I am excited! Yes I’m picturing the moment where I get up there and choke! I’m picturing all the people staring at me as I start walking up to present! But you know what…I’m going to practice and I am going to be confident. I can do this, I will do this..despite asking my WHY I will finish these classes I have begun! I have to finish..not just for me…but for others with this same journey!

I asked WHY this past Tuesday! I spent so much time the rest of last week and this weekend..just thinking. So many thoughts went through my head and I will tell you the moments of that day will be forever in my brain. I asked WHY a lot last week….I am still asking WHY! I am still anxious ( I guess you would call it that) about going to work tomorrow. The campus doesn’t feel the same…one day though I hope it does….but the key is to keep moving forward. To keep pushing for that peace we once felt on the campus. The key is to acknowledge what we lost (we lost our safety, we lost our peace) and to realize that most of all we have each other. That this journey of healing does not have to be just US! We can ask WHY but we still have to say ….I will get up tomorrow and I will move forward!

So yes as you can see I have asked WHY MANY MANY MANY times in my life…I look back over the years of my RA/Lupus/ Fibro journey and go wow…how life has changed. How much I have grown up! So much has happened…so much has changed…I’m growing up…I’m growing older..my journey is bloosoming…one day at a time!

I encourage you…ask WHY! cry WHY! scream WHY! But most importantly….focus yourself despite the WHY!

We will be successful…we won’t let RA/Lupus/Fibro win! Yes we suffer, yes the fibro fog is so bad we cannot figure out how to turn our car on some days (myself include)…but you know what…we can laugh about those moments (maybe not at that moment but in time). And we can lean on each other to get through our tough days! :)

So to the world out there…here is a future doctor…I cannot wait to see how I can change the world…even though I am asking WHY!

 

 

by

End of a Year

It is pouring rain outside and for the United States (East Coast) 2013 is less than 50 minutes away. Here in the Central states we will soon follow an hour after that….wow yes 2013 is knocking at the door! What a year 2012 has been! I cannot help but think about all the things that this year has brought!

Some of the major blessings of this year include:

* I finished my first YEAR of my Ed.D with a 4.0GPA! That to me is unbelievable, completing a doctorate is hard enough for a “normally healthy” individual much less a person who fights RA/Lupus/Fibro and for this whole year was off treatment! That to me is a miracle!

* I found some of my closest friends this year and I have used my unlimited text messages :P Whether my friends are in PA or right down the road, I have found some precious gems. Their sincerity and genuineness has been a God send this year, I am so thankful this year!

*This time last year I was wrought with heart ache and sorrow of having experienced one of the deepest hurts I have felt in life. I made choices then that I knew would impact my life greatly. But I made a choice to do what I knew was right not what I knew sounded better. I learned that I valued integrity above money, above friends, above a job…I guess above everything. A blessing through that major trial last year (while I did not know it then) was  that now I realize how much I grew! I realize that I am stronger now, more mature now and if faced with the same painful decision, I would do it again. Why? Because I saw, that God blesses through the storms and that God has a plan. I might not (and probably won’t) know why or how…but things will work out

* I passed through another year of living with my RA and I am still here today fighting just as hard as last year! That to me is a blessings. Yes there were many times this year where I was so hurt and felt alone. I was tired of people’s failing to check in, people failing to have words to say to me so they said nothing at all. I was hurt many times this year by people seeming to be uncaring or thoughtless. But then now that I think about it….I grew so much in my knowledge of myself and this disease. You know what (and this can just be me) but to “win” with this disease we have to know ourselves and how we function with this disease…alone and with people. The journey of knowing how we function with Rheumatoid Arthritis/Lupus/Fibromylagia alone is painful, scary and depressing but when we can know that…we learn how much we value the FEW (yes the FEW) people who WANT to walk that journey with us.

* I celebrated a 3rd year of marriage! We made it three years! :) My husband and I faced this dx not even 6 months after our marriage….imagine being a newlywed and hearing the news. The news that your body will be wracked with pain, crippling pain. That it WILL NOT be cured, that it WILL BE life-altering. That yes there is medicine but (and those of you on it the meds know) the medicine is horrible for you, causing a limitless amount of side effects and damage to major organs/skin/etc. I know if I was outside looking in and I read one pamphlet about my medicine and I did not have to take it….gosh I would read the paper and go HECK NO! But me..my choice is I take it and suffer the side effects or do not take it and suffer even more excruciating pain…what a choice right!

There have been MANY more positives but those are some that come to mind right away. Yet with positives are hardships too….

*Disconnected is the word that come to mind. I am a doctoral student and when I am in semester….life has one focus…STUDYING/RESEARCHING! I feel so disconnected from friends who get very tired of my cancelling or never going to anything. I get tired of little to no sleep and little to no rest. But I keep telling myself despite this SACRIFICE to my life, my marriage, and friends…this will be worth it!

*Insincerity! I have grown so very very very tired of the insincere people that I gross paths with on a regular basis. I have grown so tired this year of people who have to ask the same hurtful questions every time I see them – “how are you feeling???”, or “you look great today are you feeling better.” The answer DOES NOT CHANGE, I am always in pain…it does not help me to have you ask me about it every time you see me! I have grown so painfully tired of people who feign concern but NEVER check on how I am doing. People who when you talk to them seem so concerned but yet cannot find time in their busy busy day to text/email/tweet/facebook/etc. to see how I am doing. I know you might not know what to say, or grow tired of hearing the same answer (then don’t ask). If you don’t care about me that’s fine, if you don’t know what to say that is fine….but come out to my face and say it. I have grown VERY tired of insincere people.

—–I will say though that I have realize how hard it is to care about and for someone who is chronically/painfully ill. It takes a lot of patience and work on both parties part. I get that and I hope it does not sound mean to say what I have said. I do not mean it in a mean way…but sometimes I think we hesitate to say things and we wish later I had…I guess 2013 is my year to say things! :)

* I have grown tired of my pain! I have grown tired of every day waking up in pain from the moment my eyes open until the moment my eyes close. The constant pain when I try to open a coke bottle, sit down, drive, get dressed, put makeup on etc. Everything shows me how old my body feels and how much pain I have in life. The pain is tiring!

—–That said I have learned the true help to me writing it has been to journal about this life of pain. It helps me to share that yes I have ups and downs but still I am getting things done in life. I am still achieving my dreams!

 

As you can see there has been much that has gone in this year of 2012! Good, bad, positive and negative. It has been a memorable year…and I am thankful for all things I have experienced. I look forward to 2013 with many positive thoughts!

 

I look forward to hopefully finding a connection at my church, to completing a second year in my doctoral program (my almost last year of coursework), and  to growing with my cohort through this year. I am excited to see where I can serve, the people I will meet, the new friends I will make and the old friends that will become even more like my family. I look forward to hopefully seeing research come one step closer to a cure for our invisible illness! I look forward to hopefully getting adjusted to my Arava and Lyrica so that I am not so exhausted and sick….or that I can at least get stuff done despite being exhausted and sick!

So much more but I will end here for tonight! To all I wish a Happy New Year, a wonderful and blessed 2013! May we all make positive changes this year and through our journeys touch the life of someone else!

Goodbye 2012 and Hello 2013!