Tag Archives: peace

One word!

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One word comes to mind….PAIN!!!! My body has been wracked with major flares these past few weeks….these last few days have been the worst. Just touching my skin brings shear pain :( not sure if all the pushing this semester finally caught up to me…or just the weather etc. On top of that my allergies/sinuses have been acting up…yes not fun!!!!

That said it did mange to drag myself out of bed for some major appointments this weekend. I went to Ulta and had a keratin treatment put in. My hair is falling out so bad (thanks Arava), I started taking folic acid. But I was told an intense keratin treatment might help. Why not try??? So I did. Then I sat and watched my hubby test for his blue belt in Kuk Sool Won! I was not going to miss a test. The chairs were soooo painful…my hips were killing me…but I made it through. To reward myself I changed up my nail color (pics soon)!

Then I went home and slept….yet I woke up feeling exhausted. Have you had mono before?? That is how I felt (I have chronic mono…maybe it was acting up again). I am getting a lot of blood work this week….eeekk the vampire people again! Praying my veins hold up!!!! Thanks to Arava my veins are brittle and tend to blow often!

Hugs and spoons as I close! Don’t give up on your dreams…focus through the searing torturous pain! I wish I knew why we had to suffer…I don’t! But stick through it and we can still make a life for ourselves! Your #spoonie #squeaker friend :)

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!

Going with the flow….

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I stopped today to reflect where the river of life has taken me….sadly….no I did not end up fulfilling all my childhood dreams…at least not yet! I am not even close to being what I thought I wanted to be when I grew up and I will probably not end up in a career that I ever thought I would…at least I won’t if I stay on this track. Part of me says that is cool…I started on point A and now as the river of life twists and turns I have seen, grown and changed.

Despite the changes my body has gone through living with RA/Fibro…I am still so happy that I am doing things. Even though the things I am doing…hehehe are not what I ever though I would be doing. Like tonight (and many other nights this semester) I spent hours reading a journal (on psychometric properties involved in a RG study) and then I studied statistics! Wow if someone had told me when I was little that this is what I would be doing at this point in my life….hah I would have rolled my eyes and laughed! But that doesn’t mean that just because I am not where I thought I would be….that I have “failed.” In fact I have gained. I have two degrees down…never thought I would do that….and I’m working on a terminal degree (totally never saw that happening).  I have traveled around the world…never thought I ever would! I’ve seen Africa, India and Europe with my own eyes! Amazing! I would not trade those experiences for the world.

I guess that point to my rambling brain tonight is just because you are not where you thought you would be in life….doesn’t mean you have not experienced some pretty amazing things. Life is a river that twists and turns but wow if we see life as something that we can always learn from and change with….what doors will open for us! I cannot wait to see what the rest of this semester brings, what being in a doctoral program for a few years does for my life, or even where I will end up in a few years after I am done! That is a whole new world to me and I cannot wait to experience the twists and turns!

Sadly I know the twists and turns will come at great cost, great painful cost to my body. But I fight with my brain every day and make it work, I make myself get out of bed, and I make myself think even when thinking is so hard.  Why? Because I (and you) have a purpose here, we are supposed to be somebody and do something, and I refuse to be stopped because I feel so downright crappy. Yes some weekends/days I spend all day in bed….but the next day I am up and pushing forward! Life is a marathon race…you just have to keep pushing forward, day after day and you just have to go with the flow! Don’t let your pain stop you…keep doing something for yourself and then for those around you!

Taking It Step by Step

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The world was not built in a day..at least that is what I was told growing up! LOL! I could be wrong but I do know for a fact a PHD/EDD is not earned in a year…unless you are so incredibly brilliant that I could not even imagine having a conversation with you. Although maybe if that brilliant person suffered with as much pain and fatigue as we do with our illness…maybe that person would need more than a year too!

The point I am trying to make to myself tonight is that as much as I want to be Dr. J already…I need understand (and make my mind understand) that I need to enjoy the process (albeit the stressful process). Part of my life for a while will be the late nights/early mornings (yes it is 3:40a.m. right now). I will come to a routine of going through articles, reading, reading, reading and more reading and writing and more writing. That is going to just be my normal and when I think about it….I probably would do myself a favor and just sit down, buckle up and enjoy the ride! But you know sometimes even though we know that…our minds get impatient. I know mind sure did tonight!

However, after taking a nap I was able to re-group and read my second chapter of statistics. I was able to draft my letter of recommendation request, draft a statement of interest, and draft a research proposal topic. Whew! Tomorrow I have to read, read, and begin to draft test questions. I thought I would dislike being grown..and to some extent I do, but then again I am learning new things I will never forget to do. I am creating new file cabinets in my brain, new things are coming to my mind and I cannot wait to see what I will end up doing with all this new thinking.

Part of me wishes someone really smart would be going through this same journey although I hope their journey is one that leads to a cure for hundreds/thousands of people suffering so bad tonight! I hope that maybe this person who is out there somewhere, really starts making headlines. I hope that one day I do not have to suffer so much, I would love to wake up with energy and with zero zip nada pain! I would be so happy! I think I would jump for joy and run around the block!

That day might come in my lifetime, it might not but at least it makes me happy to think about it! :) Tonight/this morning though I will also let my mind wander to the happy day..the first day of becoming Dr. J. The first day of a new job where I use what I have learned and the first day toward a journey of using my reputation, my integrity, my character for the good of the students that I hope to serve. Never box in your dreams, let yourself have the length of the sky as the only limits to your passions and your dreams. Do not be hampered by your pain, your stress, your struggles, your hopeless. Trust me it is so easy, there are days I wonder why I am doing this? Wonder why I bother getting out of bed because I’m bound to hurt as much or more within minutes of getting up. But I keep going, you keep going and one day….hey you never know what people will say about what we have done. We, people who suffer with an invisible illness…we can change the world, we can change ourselves…we can be someone who does something remarkable.

Too many things…Too Little Time

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Do you ever feel overwhelmed? Or that sometimes you spend all the time focused on your pain! It is hard to not get frustrated and angry but for me…I have really felt overwhelmed the past week or so! I am getting down to my last class week of the semester. I have a major paper due and a HUGE (beyond huge) final.

Every part of me wants to spend every moment doing nothing but studying but you can only do so much studying! So I am trying to balance everything..add on my RA pain, Fibro fog and the side effects of the medication…and it is a mess!

But amazingly I am still hanging in there! I don’t know how I do it…but still hanging in there! Yes I’ve been quiet on here..mostly because this past week I have felt so exhausted. My energy has been zapped but I find that whenever I go days with out blogging….I start feeling restless. Just being able to share my feelings/thoughts/frustrations…is so helpful!

So this morning…yet again at 1:30a.m. I am still up ..but I’m positive! I’m hopeful that I will do well ( self-talk here) and I’m hopeful and positive that I am in school for a reason. Earlier this week I got majorly stressed about finding a full time job, car etc. and then I had to stop myself. I was so anxious I could tell I was heading down the wrong road! Everything will work out! I know it will and until I get a full time job and my own car…things will go as they have….which is fine! :)

Don’t worry about things you cannot change and do not stress! You are not alone in your battle and only do in a day what you can do :)

Have you ever

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Have you ever sat in service and it seems like the message is meant especially for you? Today my pastor spent some time in the gospel of Matthew, chapter 6 and 11. He spent the message time bringing attention to how we should not spend our time worrying. Instead we should rest in the peace that our God is ever-present. I listened and  I could not help but think of all the things that have been “worrying” me – my presentations, my MAJOR class paper, my insurance, our finances since I lost my full time job, etc. etc. The list never ends…but as I listened to my pastor, I could not help but realize…I could spend day in and out worrying about these things…the truth is that won’t change them.

My presentations will be made whether I am ready or not …so I need to do everything I can do to get ready and then leave it up to the Lord. Same for my major paper…and my insurance…my worrying won’t fix it. Instead (probably the same for many) the more I worry…the worse I feel!

So my new mindset for the week…pray more..and worry less!!! And hopefully maybe hurt less! :)

Sunday night yet again

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Yet again it is Sunday night! I was able to rest some today which was incredibly nice, I am more thankful every day for having spent Spring Break working on homework! To not be stressed out because of homework is amazing! I am ahead and that is awesome! I did some drafts of projects due in a few weeks and then I was able to work on one of three power points. I have put in place some personal deadlines which hopefully will help me stay ahead!

While going through some pictures tonight, I was yet again caught on my Africa pictures! What an amazing country! I went and looked at the power point I made to share my journey through genocide memorials! No words can describe what it is like to stand next to mass grave sites or see what I saw in Rwanda. Definitely a growing experience.

Here are some videos that I included on my power point…very thought provoking!

http://www.youtube.com/watch?v=4G2ddKchOao

http://www.youtube.com/watch?v=mK0W4jx2OZY

Psyching Yourself Up

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Yes! Some days we have to “psych” ourselves up for whatever that day brings. Today I literally fell out of bed, feeling very down and frustrated. I had to sleep yesterday which meant that I did not study like I wanted to; therefore, I am not ahead as much as I wanted to be. You know that feeling that will let you be angry at the world just because…well because you woke up on the wrong side of the bed.

I managed to stick a smile on my face, went  to my morning shift and then on break went to the library. While at the library I started to mentally kick myself because I have not been making the 100/100 grades. Ok yes I have been making “A” grades they have been say 91/100; 95/100; 94/100. Either way you cut it.. 100/100 or 90/100 it is still an “A.” So why am I making a big deal about it? I wish I knew other than my OCD push to be “perfect.” Yes we cannot be perfect although goodness know we TRY!

In the end, my conclusion is that I have an “A”, instead of spending energy worrying about why I did not get a 100/100, I need to instead worry about how I am going to keep the “A.” Focus on the IMPORTANT things that you CAN CHANGE. The bolded words are for me! I need to remind myself of this over and over and over again through out the day…what about you???

Psycho yourself up to have the right attitude for the day! I know I needed a major attitude change this morning and thankfully now that I see that light….I’m off to work! :)

Hope! There is always HOPE!

Week one…WOW

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Even in the few months since my MA was finished, I had totally forgotten how completely exhausted you feel when you are in classes!

I have so much on my to do list, it makes my brain hurt lol! Which that honestly is probably not a bad thing because that means you are bein challenged with time management skills! Honestly I think that is the most critical part of the masters or doctoral degrees, you learn to be a strict keeper of time.

I loved my classes! I love my instructors, they are challenging and I am hopeful I can meet their standard. I will say even in the first week of class, I love the learning, the challenge and the incredible sense of awe about even being in a program.

I do not like the lack of sleep, the intense pain my whole body is in due to the stress and lack of meds, the intense fibro fatigue that is so tempting to give into or the frustration of having to give things up! Good news is that any sacrifice will hopefully be worth it!

I was sitting today thinking of what it will feel like in my second or third year of this program? What will it feel like to walk across the stage? What will it feel like to be Dr.? I like how one of my instructors put it, we are gate keepers to the program! I cannot wait to see others follow into my footsteps!

The biggest challenge is my disease! I am sure a “normal” person is challenged too but when you are battling intense pain, intense fatigue and everything else you cannot help but feel like it is an up hill battle.

But I have hope that I will win! I may not feel like it every day but I am thankful for my friends, my family and everyone else that pushes me to succeed!