Tag Archives: fibro

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Rainy DAY!!!

It is one thing to lay in bed and listen to rain….it is another thing to have RA and Fibro + having to work while it is raining outside!! Today was a major milestone for me (well not specifically today but since last week actually!). I am back working full time hours for a while…and I am learning a quasi (mostly) new job! Today I learned that more gets done when effective communication is used and I learned that my body can work a full day but in the evening I am very tired!

As I rested briefly tonight I realized that I had flashbacks of completing my master’s degree program! I worked full time and studied full time! And yes it got done! Plus I was at the beginning of my RA/Lupus/Fibro treatment (dx in 2010). Those flashbacks were a tad painful – the lack of sleep, the never ending feeling of being exhausted, wanting to sleep all day, etc. etc. But I also had amazing memories…like knowing things were getting accomplished! And now even more importantly I am about a year and a half away from getting my coursework over!! I just have to keep focusing on that small goal! And then another year and hopefully the dissertation will be done!

It is all about small goals! This I have learned! First first small goal is to finish this semester! The second small goal is to get one or two conference presentations ready to go (meeting with prof at the end of the month!). And I have a few more goals but for now those are what I am focused on!

I’m hoping the pain in my fingers will stop soon! My thumbs hurt sooo bad! It is annoying, more than anything…constant pain gets really really annoying! And then the fatigue….right now I am sooo tired..but yet at the same time I know I have so much to do…I cannot really rest/take a nap! So I am going to get some stuff done tonight and then I will curl up for the night! One step at a time!

RA and Fibro do not have to win tonight…in fact I don’t think they will…but I do know they are dragging down to a much slower speed! That slow speed is what is annoying but hey at least things are getting done..speaking of..off to get more homework done I go!

 

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Barbara Jackson Memory

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!

 

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How Hard Is It?

Do you ever get angry sometimes  because it is so hard to quantify how hard it is to live life with an invisible disease? Or maybe it is just me..it seems that there is really no word that shares all that I feel – the pain, the fatigue, the inability to do things, and the all around living with pain 24/7 and 365 days of the year. Perhaps a word would not do any way because people who are not suffering like this may not be able to comprehend it until they actually feel it? Granted we know that will probably (and hopefully) not happen to them but it does bring an interesting pictures to our world.

We live in a world that I would say parallel’s the normal world. Our world is a world where we as invisible disease sufferers (spoonies/squeakers) see each other, understand each other, and speak words that we understand. As compared to the real world that parallels us…they do not understand our words or our pain…mostly because “you look fine?” ,”you do not look sick”, “where does it hurt”, “how can you wake up every day in pain?”, and many other thoughts!

For me, sometimes when I run into this “interference” I get discouraged, I feel alone, and I feel angry. After spending some time this morning reading in my Bible….I realized that I have to pick myself up off the ground when I get discouraged. I have to clean off the dirt on my pants and keep moving! The world may not understand, but I know out there…in MY world there are people who do get me. And I am blessed that in the paralleled universe.. there are a few people who try hard to understand too!

I know it is hard to move on, it is hard especially when over and over you have felt beat down because NO ONE UNDERSTANDS! It is something that makes me angry because it is as if..will we ever win this battle? Change….the one BIG word that most people cannot stand but CHANGE…we need CHANGE. The thing is though….change takes time….years, decades…etc. BUT what I find encouraging is that change can happen!!! We have seen it in our country  – for example, women on submarines (OMG!!) and the “dont ask, dont tell” changes. CHANGE CAN HAPPEN ONE VOICE AT A TIME!

Be that one voice! That is my encouragement today..I am one voice, you are one voice! Together we become a louder voice, and louder voice as more people join! We don’t have to be defined by our pain, we can use our pain to define the world and bring change! Is it hard to do? YES! But that is why we do not do it alone! :) Encourage someone today! Open your heart to touch someone else today!

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Modern Technology

Having RA and Fibro you sadly have to slow down! For me tonight that meant resting for two hours before I could jump back into studying! I hated waiting but all my studying (and anything else) will not work if I stress out my body! For me though, it is hard not to push myself …I have alway pushed but now I cannot.

And I have to take a break and know my limits! So tonight instead of driving to class….I skyped with a cohort member! I love the ability to sit in my living room and have a study group! :)

One thing I am praying for…please God on Wednesday ease my pain some! Today my knees, hands, hips and back were killing me :( pray that during my test I have some relief!!!

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Stress and Struggles

Life is so stressful! When you talk to a doctoral student, you can tell right away that they are passionate. They are putting all their energy into a grade, papers, projects, class projects etc. And the smallest things can bust a doctoral student’s confidence…when you do so well and then all of a sudden you have a bad (for us it would be a B) grade. That confidence is shattered, the confidence that you are doing well goes down the toilet. What is worse is that this time of the semester, that is what pushes you.  The grades over the semester have built confidence but sometimes you see the trees versus the forest.  The focus is on the one grade versus the impact of that one grade, for example what if that one bad grade is worth at most 1% of your final grade…versus like 30%. I would MUCH rather get at B on something worth 1% of a final grade versus 20%. Nevertheless, when that confidence is shattered..it stings, it hurts, it breaks your heart. If it was me….I would be crying and eating buckets of ice cream. The truth of the matter is….it may not have been me today but it will be me one day. In fact, probably more than one day..it will be become part of my journey.

That is the same mindset that we have to have in life. I live daily with pain…my legs today have felt broken. My ankles, knees and hips have felt like someone took a jackhammer and hit them multiple times. The exhaustion of my brain today have felt like I was going in slow motion. My hands, wrists, shoulders and fingers have struggled not only to open things, to feed myself but also to just find a comfortable resting spot. For people who have RA, they suffer…we suffer. Add in Fibromyalgia and we live in daily torture. And for MANY people the side effects of our medication make life (living) even harder.

For  days like today it is hard to see the trees, it is hard to go..well it is JUST today….because we know that tomorrow we will hurt too! BUT what can we do to live life with our RA, Fibro and many other invisible diseases??? We take one day at a time, focus on the forest and take on small painful step at  a time.

Realize what are your priorities, realize what you can likely do in a day and then the rest of the day thank God for it. Thank God for people who cross your path..smile at someone who does not even know you. Or pay it forward, do something out of the ordinary for you. Why? Because you are living for the forest, not the trees. You are living to impact the world…not just the small circle that surrounds you.

Try it and let me know how it goes, I know that personally I am working every day to look at the forest. Is it hard??? YES VERY! It is VERY VERY VERY hard to not think of yourself, your pain, your torture and all your other worries. BUT for me I know that there is someone else who has my worries in his hands (my GOD) and that I do not have to spend every day worrying about. Instead I will spend my day touching someone’s life! I want to leave a legacy hat says…”she cared for me,” “She smiled at me and talked to me and changed my life.”

Be the change you want to see in someone else!

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The hard days

For us spoonies or squeakers some days are so hard! So hard because our bodies are not just our friends! Today was a day for me…I am seriously struggled to get through today because I hurt so bad. And of course when you hurt so bad, it tends to drain your emotions! You feel lonely because NO ONE (but fellow squeakers/spoonies) understand!

You sometimes want to scream because for one moment, one short moment, you just do not want to hurt! You want to know what it feels like again to get out of bed and not hurt. To shower and not struggle to open bottles of shampoo! You want to know what it is like to wake up, go to work, go to dinner, shop and hang out with your friends WITHOUT the feelings of CONSTANT exhaustion!

You want to look in the mirror and not see the weight gain (thank you steroids), the acne (again thank you steroids) and the hair problems (loss/dry—thank you autoimmune suppressants). You want to feel NORMAL! You want to feel happy, care-free, PAIN FREE!

I know for me, my normal has become pain! Intense daily pain…many days it brings tears to my eyes…..because I am too young…we are all too young to live our lives like this! But you want to know the one thing that perked me up today….Today what perked me up was when I got to hold the hand of someone who is walking in the very last weeks (maybe even days) of her life here on this earth.

So despite my frustration, my anger, or my complete exhaustion…I am glad I pulled myself out of bed today to go visit her! Strange how when you go to give to someone else..you end up being blessed in the process!

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Conversations and Music

Today, I had an awesome conversation! It made me realize how long sometimes do we go with out a real conversation?? We are a society so full of text messages, phone calls, Skype, Facetime etc. We have lost the “art” of someone talking to you one on one! I don’t know why but it really made my day to have a good conversation with someone today! I hope I can have another conversation tomorrow, the next day and the next day!

Music! Do you ever use music as therapy??? I do … the nights I am suffering so bad I can barely thing I go to my music! Here are some songs that I like! :)

http://www.youtube.com/watch?v=8-vZlrBYLSU&feature=relmfu

http://www.youtube.com/watch?v=IocHzS2sRJ8&feature=relmfu

http://www.youtube.com/watch?v=4fqPcnuVPR8&feature=related

http://www.youtube.com/watch?v=R_zi4OxJpY0&feature=related

YES I do love Rascal Flatts :)

http://www.youtube.com/watch?v=dnvg0OtupuI (amazing video of Carrie Underwood singing “How Great Thou Art)

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Thankful

I’m thankful! Why? Thanks to the “crappy” meds my stomach/digestive system has been messed up and that makes it hard to know what to eat. It also makes it hard to find food that doesn’t make you sick later. This problem makes it extremely difficult to buy food because it will look good in the store and then you go and eat it and it doesn’t settle well with you. Then you end up paying for eating it later. My tastes have so changed since my first dose of autoimmune suppressants.

But I am thankful for my husband who at 10:00p.m. will go out and find something that will settle in my stomach. That is giving! And loving! And for that I am so grateful! My pain tonight has been so intense..everything is hurting/everything feels broken. The exhaustion is intense…and to be honest I have not gotten much done.

This makes me incredibly thankful that I had worked hard over Spring Break…if I do not get much done tonight or tomorrow…I will still be ahead! SOO THANKFUL!

So yes tonight I am thankful! I am thankful for those who encourage me, thankful for my hubby who gets me food and thankful for all that I have in my life.

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RA Link

I was sent this by an amazing friend (love her to death), it is a nice link to send to those who are struggling (as many do) to understand our disease. SOOOOO many people hear “arthritis” and their thinking caps click off! This hopefully will give a little more insight. I know I as on Methotrexate (oral chemo…sounds great right??) and then Arava (Leuflonimide? ..HARD STUFF) and had many many health complications because of it (liver, heart, eyes..etc.) BUT my pain was less!! What we do to help our pain???

http://health.msn.com/health-topics/pain-management/rheumatoid-arthritis/dmards-powerful-rheumatoid-arthritis-drugs-to-stop-or-slow-joint-damage

Check out this link and then read this short response from someone who has our disease. What she is going through MANY if NOT ALL of us have a risk for or have gone through this and worse!

“ I ended up with a huge abscess on stomach because my immune system is so weakened because of all the MEDS and had to have surgery have all the infection cut out and am left with a open wound that just has to heal naturally .  Had to stop all MEDS at first sign of infection because they are they reason I keep having issues being sick with something .  I won’t be able to go back on them until this is fully healed and even then I wish I had other options because I am so tired of getting deathly sick I have 3 kids ages 3, 6 , and 8 .  I try to keep distance when they act like they may be sick and explain why but they don’t understand . “
RA affects our bodies, our minds, our families! Please pass this on, please raise awareness so we do not have to suffer in silence!!