Tag Archives: Hope

An US Day :)

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Matt and I decided we would take an US day and drive up to the George Bush Presidential Library. I had always wanted to go and decided that despite the drive we would make a day of it. I really enjoyed myself even though it was exhausting. I figured I could sit at home feeling gross and in pain or I could sit in the car and then walk around for a little bit. I was glad I went even though (AS USUAL) I am paying for it today :(

Imuran and I are not friends yet. Def. exhausted beyond exhausted and just feeling rotten. I’m still on a loading dose, the full dose will start within another week. Right before I go into my statistics two class YAY!! NOT!!!

Here are some pictures of our day :)

 

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Getting there

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I am thankful to say that I am getting over my cold. Two days of rest has done wonders, that and Tylenol Cold and Flu!!! I am hoping to be back at work tomorrow and thank goodness I only have one class!!!! That means tomorrow night I will be able to get home earlier, YAY!!! So another perk. I hope to get off work about the same time, and then I will be able to rest some before class. I cannot believe the semester is going to be over soon, just a few more weeks and the term will be over. I just keep repeating to myself, finish strong! This time of the semester is the most stressful for me because final projects are due. But I’m reminding myself that I have to focus, and just take it one step at a time.

For my personality, I will say I have grown into the idea of setting myself up time to do things. In that, I am planning ahead and working hard to stay ahead. That way if I need a night to sleep I have it. Or if I need a weekend to decompress I can take that weekend with out stressing out the next week. I will say this bought of a cold has been the easiest one (knock on wood) this semester. I think I can attribute a lot of that to having learned and immediately I took time to rest.

I’m a hard learner but I will say eventually I get things. But today I made use of my day at home. I woke up and completed three transcriptions of my interview. Now I am ready for the data analysis stage!! YAY!! I’m excited!!

Now off to prep for a meeting and then to an early bed. Thank you for checking in on me :)

 

Ahhh cold!!!

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You know the week when you have lots of stuff to do…yup that is the week you wake up SICK!! Yesterday I started sneezing and coughing…in the back of my mind I was thinking “AHHH NO MORE COLDS!!” I started taking my allergy medicine hoping and praying that was it…part of me thinking it would not help. But I did try the allergy medicine only to wake up today feeling totally totally rotten. My head is all stuffed up, nose is runny, sore throat and overall feeling just rotten.

Not the day I had planned, not the week I had planned. I know I for one HOPE this passes soon. But at the same time I am proud. I have learned over the past few years…when sick STAY HOME AND REST! It is SOOOO hard for me to do this….seriously if I can move I will go to work. But I made myself stay home and I stayed in bed. I will say I have no doubt it helped.

I have said it many times….living with Rheumatoid Arthritis, Lupus, and Fibromyalgia….IS TOUGH! And inevitably you get sick. BUT to better handle my sickness…I decided I had to stay home and rest. I did not like it..my bank account did not like it…but one or two days at home in bed…might save me $1500 in ER fees. I hate to tell myself that but I know my reality, MY NORMAL means I have to rest, and stay away from the world when I am sick.

But at least I was able to tutor statistics tonight, I have been working on some homework. And I hope to get some sleep and wake up much better tomorrow! Balance, focus on yourself, give yourself time to rest and slowly work on accepting the new you! The new normal you! I know I had my new normal sometimes…I feel as if I am barely doing anything….BUT IT IS MY NEW NORMAL!

Hang in there…have a great week! :)

 

Back up …Again

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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!

 

Do You Ever Dream????

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Do you ever dream??? I’m up because my nausea is bad (thank you Arava!) and I cannot sleep! It is almost 1am and my eyes are still watching tv and my mind is wandering! The random thought popped into my head….do you dream?

I dream…..I dream of the day I will walk across a stage…the same stage that marked the end of my college journey.. That same stage where my Dad watched me finish college will also be the same stage where I will make the end of my educational career! Wow! Yes I dream of that moment!! That moment…that dream…keeps me going despite the pain, the nausea and the fatigue!

I dream…of running around, as if I had energy and was normal!” Weird right??? I mean I know in my head and my heart that these pains I will probably have for my life….but part of me goes…maybe tomorrow I will wake up and my dream will come true!! Dreaming sometimes it feels sooooo good! Especially tonight when my body hurts sooooo bad! My fingers, arms, knees, ankles…whole body hurt! I had a bad flare last night and I’m still recovering. :(

I dream…of changing the world! I dream….of seeing the world ( China, Africa (again!), more of Europe, and south east Asia)! As you can tell I dream of travel!

I dream that the words I say today will help someone else out somewhere! You can dream! Dreams keep me going! Dreams keep me positive!

If I didn’t have my faith and my dreams…..I don’t know where I would be, or what I would be doing…hmmm

Dreams….dreams help make good despite bad! Dreams help me be positive versus negative! Dreams bring hope! That hope helps me say that despite my RA/ Lupus and Fibro…I will one day change the world!

You ask….WHY?

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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!

 

 

Thinking….yes still thinking

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I woke up today and spent a lot of time quietly thinking…while trying to do my homework! I am still amazed at how much my body hurts. You would think with steroids now for three days I would have a little less pain….yet that is not the case!! :( But at least being for the most part home bound by the pain etc. I am getting homework done…albeit not as fast as I would like.

My Molly got her first bath today at the groomers! She did lovely and she looks beautifully clean :P I posted a picture of her on my Facebook page :) And she got a cute little dress. I will post a picture of her when she sits down :P

Well it has almost been a week since the shooting…still so much more to process! But it is a process to processing….confusing right…but true! Sooo more thinking and more processing…and hopefully soon I can say it has all been processed. Although I’m thinking it will take a lot longer than I would like :(

Thank you all for your hugs and support! That means the world to me! :)

 

Pain Today…Gone Tomorrow

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Pain was horrible today…yet again I realized how hard it is to do things when your body feels run over. For a good portion of the morning I had brain fog…I struggled to keep awake. Not only that but I was working at home today so I was battling curling back up in my bed! Well good news the bed did not win but I am exhausted!! What is still keeping me up??? Yes you know it….PAIN! Then I was so tired and body hurt so much that I really did not get too much of my homework done. I updated my FB page’s cover (and that did take awhile) and then I just relaxed watching a good show on Netflix. I gave today all I could give, and that to me makes a good day.

I thought today…what would a day of no pain feel like…it has been so long since I have had one of those. My typical day consists of pain from the moment my eyes open until my eyes close. Granted the intensity of pain varies from an annoying ache that does not go away (this is in my hands, knees, hips, back, ankles, toes and fingers. And a little in my shoulder and elbows) to a stabbing pain that prevents me from moving. I picture a day when I can wake up in “remission” so that when I get up I am like I was before….normal. Where I can go and go and go and not get exhausted after putting on my makeup or getting dressed.

I realize now (don’t they say hindsight is 20/20) how selfishly I took for granted simply moving. I took for granted a pain free day and I wish I had not.  I have so much more on my to do list that needs to get done!!! I need to go to the Asian continent and see my list of things, I have to go back to Africa to see more things and I have to travel Europe more!! I cannot have pain every day right….and then….I wake up and realize I was just picturing a day….that my life IS PAIN every day!

The pain varies from my RA and my Fibromyalgia. Although on a typical day both are hard at work making sure their unwanted invitation to my life is not forgotten!!! Who ever sent the invitation to these diseases….we must have words! I know now I would NEVER invite them to my life….these diseases don’t get the hint to LEAVE! :)

One positive..although it might seem like a small positive…is that I am adjusting ok to the Arava and Lyrica. Are the side effects gone…no by NO means! I am up for liver labs in March…I’m interested to see those tests. I am also hoping to have lowered my CRP and ANA. The meds are NOT great for my body, in fact they are horrible for my body…but they help…in their cruel way the meds help. So I am thankful tonight I have them….not too long ago I did not have them.  And I know right now there are many who NEED them but still do not have them. Keep those people in your thought tonight. Say a prayer or send a positive thought that those people’s Fibromyalgia and/or RA is eased tonight!

See ya’ll later!

Hang in there

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I don’t know …maybe it is just me but this week is going to be a tough one! Major final on Wednesday and then a final paper due on Friday! AHHH!! Yes screaming at the top of my lungs…if it would solve anything lol! BUT one good thing…I made it to service today! I loved the message, very encouraging. I realize the most important thing in life staying close to the Heavenly Father. For me, my faith has become a critically important aspect to living! That said, I have realized over the past few weeks I have let spending time in prayer and reading God’s word slip. I’m sure I am not alone…we get crazy busy and those things tend to slide but you know….I hate to say it….when I am stressed or in trouble…that is when I cry out to the Lord. The truth is though…he is not a vending machine that I can go put money in and get a caffeine drink to keep me awake whenever I need it. Sometimes I think I am guilty of doing that…running to him when I need something and not dwelling or keeping that relationship close when things are fine and dandy. So that was my conviction of today, keeping my faith as a priority not as something I do whenever I have time…honestly I doubt I would ever have the time if I did not make the time!

Another positive for today!!! I finished the ROUGH ROUGH ROUGH draft of my paper!! It has been peer-reviewed twice today..it is on hold until tomorrow afternoon and then I will work on editing it a bit more. This paper counts for a lot so I want a REALLY good paper! And I also was able to be on my study group this afternoon! We spent two whole hours on statistical terms etc. Whew! Talk about a brain fry! But that is ok, just a few more days and this term is over! Def. know I will need MAJOR prayer over the summer…I take advanced statistics over a 10 week summer term!! OMG!! Ok well I have a few months before that reality comes so pray for me!

I’m off to cover 6 chapters of statistics, more or less refreshing myself on things I know! I’m taking a deep breath, breathing in and out, trusting if my God, knowing that I will do my best and the rest is in God’s mighty hands! I’m praying my FIBRO fog doesn’t hit me until Friday night (pray with me on that), I’m praying that my RA pain especially in my knees, hips, ankles and hands is held at bay until Friday night (wow a whole week…..praying!!!). God has an awesome plan for my life, he has an awesome plan for me in this doctoral program….whether this class is my first B in a LONG time, my first C in a long time or by God’s grace my FIRST A in a doc stats course EVER….HIS HANDS/HIS PLAN! And I will give God the glory for He is good.

So off to study…I will keep you posted on one TOUGH week of this semester!

Also if you could send positive thoughts for my cough and cold are STILL hanging in there! Praise God my insurance kicks in Sunday!! WOOHOO!! :)

 

 

Barbara Jackson Memory

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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)

Love!