Tag Archives: United States

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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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!

 

First Step

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I took my first steps in research today!! I went into the classroom (I was a little nervous I won’t lie) and requested participants for my study. I remember thinking as I was walking over to the classroom…breath, think, pause, don’t talk too fast or to slow, make sure to look around! Yup! All these thoughts were going through my head! And it did not help I was going on short breaks from work so I needless to say I was running all over today! It was a bit insane. However, now that I did it (and THANKFULLY I did get some participants) I am excited!

Moving forward part of my mind keeps thinking of all the “what ifs” that might happen but then again that is part of learning how to research too. At this point I believe research is a process…a process that runs smoother after you have some experience in doing it. As for me, this is my first research project involving human subjects…it will be an interesting ride!!!

However, I know that no matter what happens with my research, I have to balance conducting research against doing my normal/regular homework, balance working at my job, and of course my home life.  It makes me even more aware of the fact that I must be careful and rest! My note to self today is to rest! I think I will actually write that word in big letters above my desk! So that when I stop and look up, I remember that it is critical with my RA/Lupus and Fibro to REST! :)

 

 

 

Rainy DAY!!!

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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!

 

Catch my breath!!

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Do you ever feel as if everything is going crazy around you?? That’s how I felt this week! I left for San Antonio on Wednesday! We (three of us from my cohort) drove together and had a fun time getting to know each other a bit better than we are afforded during our six hours in class.  We arrived there in good time and checked into the Menger Hotel (http://www.mengerhotel.com/). This hotel is very historic and located right next to the Alamo!

My cohort buddy and I immediately got ready to present and then went to find the room we would be using! I practiced a few times as did she…but I will say the waiting for the time to come….that was nerve wracking. I was doing fine until the time came..then my stomach hurt because I was soo nervous..it did not help that the room was filling up either! I think  I counted some 20+ people in the audience! Goodness! But thankfully I was successful in presenting my study and I a few asked questions after the presentation was over.

The night was MUCH better after the presentation was OVER!! My cohort mates ended up on the Riverwalk getting some food and enjoying some fun times. We were up bright and early for a continental breakfast at 8a.m. the next morning (EWW!!!) and then it was conference presentations until noon! Then a lunch at the hotel and back to presentations until 5:00p.m. Then another night on the Riverwalk! Friday morning again I was up early for a leadership meeting, my peers elected me to be their representative to this organization, and then the cohort meet for one more conference presentation. We got on the road shortly before noon and I was home by 2:00p.m.

What a whirlwind of a week!! My body was soooo tired from the travel, then the presentation, and then working to keep up with the rest of my cohort! We had a lot of fun but I paid for it. Yesterday I was soooo tired, I just wanted to sleep!

This morning I woke up early again! My hubby was testing for his yellow belt so we had to be up and at KSW school by 9:30a.m.! He spent about 3 hours testing, and broke his first board in this martial arts form! Then we ran errands before I had to come home for a nap! Now I’m back into the homework…..

So yes I want to catch my breath….sit on an island and have a pina colada…LOL! RIGHT!! :P

Rheumatoid Arthritis and Fibromyalgia don’t let me catch my breath! Homework doesn’t seem to let me catch my breath! BUT overall I’m still making strides so for that I am happy!! Fatigue seems never ending…but I’m fighting back! One step at a time..one breath at a time!

 

It is worth it…RIGHT?

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I have been asking myself this question tonight…in fact many times over the past few days. I had thought (NOT SURE WHY!) that my second year in this program might be easier. I failed to think about the fact that more is required….I am expected to not just be a reader of research to be begin the transition of contributing to research myself. I hate to say I have complained about the process…but it is not the process that has really caused me to wonder “is it worth it!?” In fact, in all honesty I love the projects…the digging for researcher to support a theory or the preparing of an IRB proposal. None of that makes me wonder why I am doing it..why if it is worth it! Why? Because I see gaps I want to fill…I see journals I want to publish in! But you know what is even more exciting is I am contributing even next week as I share my proposed idea. And as I am working on my pilot study I can hope and get excited about my project. I cannot believe things are taking off like they are for me in school.

What makes me wonder why..or if it is worth it…is not the academic side but the physical side of it. I have recognized this week (as last year I lived in pain but did not have to balance the side effects of the meds..thanks to no insurance) that being on treatment while doing school is probably one of the hardest things I have done. I am balancing learning new things, working different or even longer hours and then coming home at night and completing my homework…all the while balancing the meds/the side effects. This is what makes me wonder…is it worth it??? Is the pain and the nausea I feel worth it?? Trust me this week as several nights (like tonight) I have been up sooo late working so things are done. Making myself type words because my hands are sooo stiff I know when I stop moving them they will not work. The pain in my arms feels as if they are broken…probably from all the typing today. The pain is what makes me wonder is this all going to be worth it. The fatigue is what makes me wonder if it is worth it.

One day this week the Fibromyalgia brain fog was sooo bad I remember sitting and wondering…was it worth it? Why not just stay home and sleep! I know crazy right??? But in all honesty I do have a family to care for, I do support my mother and I have a husband to care for…those things (and the bills of course) keep me pushing myself to work. The mental image of walking across the same stage I walked back in 2007..except this time I will be done with school after more than a 10 year journey and my dad won’t be in the audience on the floor.

I keep telling myself despite the Rheumatoid Arthritis, despite the Fibromyalgia and everything else…it is worth it!!!!  Despite the swollen wrists, and little sleep..the outcomes will be worth it! : )

Let see if my self-talk continues through tomorrow! :)

Careful What You Ask For!

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So yesterday after a VERY stressful week….I was thinking…wow I just need to rest! I was soooooo looking forward to a nap! I was sooo tired!! So I get home and I start digging into the homework I have for this week. Plus in my mind I’m trying to prepare for the presentation I will be giving next week. Plus I was digging for research…so yes needless to say I had a lot going on in my mind. Molly starts to whine as if she needs to go potty….and so I picked up her lease and took her out the back door. And before I stepped out the door the thought crossed my mind…should I get my cell phone? And I was like…umm no because it is just stepping outside the back door and then back inside. And mind you I was checking off how many minutes I would be out there before I could come inside and start back to work on my research.

As soon as the back door closes I heard a click! And I was like OH NO! SERIOUSLY!! Yes the back door was locked! I had no jacket, phone or keys! What at a mess!!! So I walked down the block until I saw someone standing in his yard and asked to borrow his phone. I called my husband and had to sit outside and wait for him to get there.

The moral of the story…be careful what you ask for!! LOL! I had just been thinking earlier yesterday how little time I spend OUTSIDE! And how nice it would be to do NOTHING OUTSIDE but instead I had research to do! OR so I thought right!

So I did get my time outside! And I did get to do so with out a book in my hand!!!! Careful what you ask for right!!

Since yesterday I have been up furiously typing away on a report that is due by tonight to my professor! I have done a couple of run throughs to the presentation that I am going to be doing. I am hoping that I do a good job and that I learn some improvement through each presentation I give. I love the idea of being a good speaker and I know that comes through practice. You do not get better at talking to a group of people about your research until you do it! So I am really looking forward to presenting and I hope that as I have with each practice…that  I do a good job!

This reminds me of why I took up debating in college! Because I realize the value of good public speaking. And I do enjoy speaking! :) I think on a scale of 1 to 10 that I do about a 6 or 7 with public speaking. I’m confident but when I first start out I am sometimes nervous and I talk fast! :P BAD!! I know!  So now that practice has taught me to limit the “ums” I hope practice will also limit my nervousness and fast talking at first. Typically after a few minutes in, I’m comfortable and things go smoother! But if I feel rushed I tend to lose my train of thought! So Lord willing this presentation will go well!

 

Off to do more research! Remember be careful what you ask for! :)

 

It did happen…

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I woke up this morning and I think my first thought was …wow yesterday did happen. It was surreal returning to campus this morning…the fog was heavy and as I drove by the school for my entrance it was hard to believe that just yesterday our campus was crawling with SWAT, HRT, canine units, FBI,  and many more law enforcement officials. The campus was so quiet today….staff/faculty and students were still in shock. I cannot help how tomorrow will feel because the T/TH students (those who come) will be the students who were for sure there on that day…yes that day! The day we won’t forget!

I’m reminded how insensitive the news can be…the reports have not necessarily been the most accurate. I was reminded how cruel people can be asking questions like “Did you see anything good”, “did you see a lot of blood”, “oh you are fine now”, “how was it hiding under a desk” and much more. I think even more painful to read are the text messages saying things are good and I must be ok! Ok….that would not be the word I would use today! I won’t be ok for awhile!

The comforting texts were the ones simply saying “I thought of you today” Those texts spoke volumes of comfort! So tonight…again I’m catching myself replaying for the 100th time the events of yesterday (not last year…not another lifetime…not someone elses’ story…my story). Yes again…we didn’t have the outcome other campuses have experienced, praise God for that…but we went through a traumatic experience no one should go through anywhere much less where you are going to school. You expect to be safe..you want to be safe on a college campus. It is so sad with that haven of safety has been torn down.

I will never forget the words that brought fear to us all…I will never forget the fear in students eyes, the panic they felt, and I hope that if nothing else we can grow through this and use it for good…..

So today…just processing…

 

End of a Year

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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!

Resting

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Sadly, I am sitting on my couch today where I have been since about 1:00p.m. I went to be about 9:30p.m. and couldn’t drag myself out of bed until about 11:00a.m. Although I should get a star  because I did manage to clean the bathroom before I realized I just did not have any energy today. That’s the thing that I miss the most…my “old” normal energy. The girl (yes still girl) that could get three hours of sleep and go almost all day long before feeling tired. That has been replaced by someone who takes about an hour to get up in the morning (that is just dressed/with makeup), and then another few hours to finally feel like my brain is awake! I’m much slower these days and thanks to med side effects I am doing even less.

Remember what I said about moving though, I did MOVE from my bed, through my house and then onto my couch :) . I am joined by my two precious kids (furry kids) who love to snuggle and sleep. Gosh I cannot look at them too long though before I want to sleep too! But Matt has class tonight and we get our final present of the year. I’m excited to share what that will be later tonight (or more than likely tomorrow).

I had a friend of mine tell me today….I don’t understand why you are taking…umm what are you taking again? It reminded me again of how hard it is for MANY people to attempt to put themselves in your shoes. And trust me I get it…why would I want to care about the world of RA/Lupus and Fibro if I was not living in it? Ummm I would not. I would not want to take the time to learn about the diseases, what they do, how to treat them, and the side effects…much less talk to people and really try and GET what their new “normal” lifestyle is like. Honestly once you get any of these diseases (and MANY more)…life changes! Life is NEVER the same again and life will NEVER be the same again. That fact alone is such a hard concept…throw in looking ok on the outside and wow…in many cases people do not know what to do!

Is it frustrating…yes very but I will say…the genuineness of a few people will make it all worth it. Find those few (and yes few) genuine people who are there for you. People who will listen, people who will pray with you, people who will be there when you need and not try to sell some new cure for you to try. People that will encourage you, people who will encourage your marriage (because a marriage with any illness is rough). People who will just be genuine supporters….gosh love on those people. Hold them close, cling to them. Those gems are few and far between!

Another of my NY resolutions….to be that genuine supporter to someone new. I know how much that person would make a difference in my life and in my family’s life. I pray that I can reach out there and touch someone in an incredible way this new year. Be that through this blog, my facebook page or through living in my new neighborhood.

Back to bed I go :)