Tag Archives: Lupus

Home Again!!

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It is is soo nice to be home and sleep in my own bed. Although I don’t know why but for some reason I kept thinking that today was Monday or Tuesday..not Wednesday. It is amazing how a change in your routine really makes it difficult. Tomorrow thought will be my last “full” day of work for this week YAY!! And the good news is that tomorrow will be a slow day. I can sleep in late and leave work early in the afternoon. So I can sleep in and take a nap!

My goal for tomorrow is to rest and work on getting my paper written…I have to add the preliminary themes. Then I will work on getting into a few more classes this summer to see what students might tell me using my same interview questions. I definitely want to encourage credibility and rigor within my study.

That said, I am home from my last class of this semester! YAY! I have to turn in my paper by next Wednesday (so I have a week) and then I have an awards banquet on Friday. Then to work on my first study some more, I want to get two conference proposals ready before the summer begins. Yes a busy few weeks but I am hoping to enjoy some down time too.

I’m off to rest…my body is in a major flare. Too much going on I guess! Hugs and spoons! :)

 

As I Lay Sneezing

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Sneezing…ugh I hate sneezing! Today the pollen/allergies have been sooooo bad. My nose was soo stopped up and now I am sneezing a lot! UGH! If  I am getting another cold I’m going to be REALLY mad. I know I have been around really sick people this week…please Lord don’t let me get sick!!!

Today was one of those days that I was sooo stressed. It seemed like everything that could go wrong did go wrong! It was truthfully one of those days where I wanted to crawl back into bed as soon as my eyes opened. My first thought today when I woke up was “gosh my elbows hurt” and no kidding you they did hurt. I could barely move my arms up and down and around. Trust me putting on my mascara was NOT fun! And I finally realized what was probably affecting me more than anything today….in a week from today I will mark five years since my daddy died. It does not seem like it has been five years…it feels like it was yesterday. I caught myself looking at his pictures this week and tears welling up in my eyes. Gosh Daddy you have missed so much….and it still seems so unfair. I find it hard to believe that five years ago I was beginning your very last week of life. You didn’t know me, you hurt so much…but I was there by your side. Watching and waiting…praying  that your pain would ease. It did….a week from today.

That said I’m making progress in my research YAY!!!! And I am enjoying it…pray with me (or think of me) I am working on a proposal and I really want it to go through. If it doesn’t oh well I have not lost anything that’s for sure. But it would be really cool!

And such awesome news…this time next week I am packing for SAN FRANCISCO!!! I have never been west…farther than Texas. I am flying into San Diego and on into San Fran. I am soooo freaking excited to fly and see the west coast. I cannot wait to do some sightseeing!!! YES I am counting down!! Rheumatoid Arthritis, Lupus, and Fibromyalgia you are not getting the best of me. I am going to enjoy myself in San Fran.

So yes as I lay SNEEZING I hope that you have a great night tonight..the weekend will be here before you know it!! Many spoons!!

 

Hang In There

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Wow what a week! The good news is that I am getting into a NEW research project but I am also trying to finish two projects and research on a third project.  YES STRESSFUL! But the good thing is that I am REALLY learning time management. Today I had to come home and take a five hour nap after my meetings because my body was sooo tired. And I have had a major Fibromyalgia flare since earlier this week. I hate how even my fingers throb with pain. The fatigue is bad and then it feels like every touch, even my clothes, bring stabbing pain.

I was reminded today of how great it will feel one day to be pain free! For me that means the day I move from this earth into a heavenly body (if science does not find a cure/treatment before then). That might sound sad but you know honestly it is so great to have faith. My faith keeps me going and I am holding onto that faith today as I remind myself….take a breath, organize, and keep focused.

I am so amazed by the opportunities in my life, the opportunity to share my story, the opportunity to develop myself academically, and the ability to develop into a more mature young woman. Do I wish I did not have Rheumatoid Arthritis and Lupus…combine with Fibro… HECK YES! But I  am happy that I am using those for good.

My goal is to finish this last (or maybe not) degree by May 2015. Will that take a lot, A LOT , or work…HECK YES! But do I think I can do it…I will do my very very very best! I will stay focused, I will not be strayed…I will give it my all!

So back to the books I go! Hang in there…focus, breath, sleep, rest, relax, and stay focused!  WE GOT THIS!!

 

Goodnight Sunday..Hello Monday!

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It is 11:57p.m. Sunday night is ending…and Monday is beginning. I woke up today finally feeling better….although I will for sure be taking Clariten tomorrow (and for a few weeks)

Have a great Monday, as it is 11:58 p.m. I hope that we focus our minds into thinking of some positives for tomorrow. Like hopefully tomorrow my nose won’t be stuffy. Hopefully tomorrow my Rheumatoid Arthritis, Lupus, and Fibromylagia will be in check and I won’t hurt so bad!

It is 11:59p.m. now think about things that you want to work on to make YOUR LIFE BETTER! I want to  be a bit more patient, I want to be more thoughtful of others, and I want to smile a lot more!

As Sunday winds down to a close, I hope this week is amazing.

Hi 12:00:00a.m. HAPPY MONDAY!!!

 

Whew!

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Whew!! Wow I just looked at my date book!! My calendar says the semester will be over in a few weeks HOLY CRAP!!! I have a major paper due in one class…and that will include a powerpoint presentation on May 1st. And then in my second class I have a small project due next week and then a final presentation on April 24th.  So I am almost done! Thank goodness I did a lot of work during Spring Break so I am able to go through the week a little less stressed YAY!!

Which this week  I was extremely thankful for that because I spent the whole week sick! I did make it to work on Wednesday and Thursday but then I stayed home on Friday. I thought on Wednesday I was on the mend but I woke up so much worse on Thursday. Booo!!! But by this afternoon I’m feeling a bit better and I was able to work on homework this afternoon. YAY!

I spent yesterday and today catching up on my shows on Hulu! YAY! And then maybe tonight I will have some Netflix fun! :-P Thank goodness for those two ways of watching T.V. I have not paid for cable in two years :) …thank you Hulu and Netflix!

My goal is to start taking Arava again on Monday. It has been rough this week not having it but I had hoped being off Arava would speed up my healing from my cold. Not sure I can say it did but at least I tried! I was able to stay on my Lyrica so thank goodness my Fibro did not flare! YAY! Praise God!

Now to just make it through the next few weeks! I cannot wait until the 26th I am heading to San Francisco. My first time to the west coast! :) I will spend three days there…landing in San Diego on my way :) Cannot wait!!

 

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! :)

 

Spring Break Is Over

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It seems like a misnomer ..since I really didn’t take a “break” but it was nice to at least be able to catch up on things and get some things taken care of over “Spring Break.” I was thinking today of what the next 8 weeks will hold….planner me! :P I will be in San Francisco….working on a major final research project…working on editing a research project I did hopefully for a journal….and keeping up with class/regular homework! And I think it suffices to say that April is probably one of my busiest months at my job! Many hats will be balanced…I am praying for strength, ability to balance, and for rest so that I will successfully and safely make it through this semester.

As I have mentioned many times on here…I struggle to balance. I get bursts of energy and end up doing too much ( ahhh you know!). But what I have to do is take my time, rest when I need to rest, take naps, and make sure I get adequate sleep. Despite that I also need to be confident in what I am doing, but above all stay focused on the path God has for me. I started a new Bible reading plan! I love it…it is one bible verse a day…and a short devotional. The best part is that it is on my Ipad/Iphone so I don’t have to be at home to do it! Reading the Bible brings me peace…and MANY days despite how hectic it is..I love I can find a moment to find some quietness in the storms that come in life.

I’m nervous, on Tuesday I will be going into the classroom requesting participants for my FIRST research study. Talk about being nervous!!!! Ahhh!! And then on Wednesday the 27th…I will be teaching a chapter for the FIRST time to my cohort! Wow! So yes a lot of firsts….and I’m nervous but you know I am also confident. I have been preparing, I have been reading, I have been editing my power point, and I will be practicing my powerpoint. God is good! He will sustain :)

My tip to myself tonight is ….Jo despite your Rheumatoid Arthritis, Lupus, and Fibromyalgia…you can be successful..you just have to balance and take care of yourself!

Until tomorrow :)

 

Passing Time

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I love sometimes just sitting, listening to music, and thinking about life. Sometimes it is good to think of where I have been, where I want to go, and the path to get there. You know when I was younger, I always said…I would go back and change a lot of things about life…but now that I have matured…I think those things have helped make me into the woman I am today. Granted the changes in my life have not always been met with a smile :P ..too many times the changes have been met with anger or usually tears.

I know when I first found out I have Rheumatoid Arthritis…I was so angry …and so upset at the same time. I was only 23 years old…planning life. It took a while (more like a few months) to finally be alright with this disease. It took time to get to where I wanted to see what good I could do with the illness instead of just focusing on the bad. It took awhile to get the courage to tell people, who constantly kept saying “I will pray for healing”, that I would pray instead to pray for me to be positive and use this for good.

Through my RA (and Lupus) journey, I have learned about strength, perseverance, and determination.  I have learned who my true friend are and I have learned how important it is to look at everyone as if they might too have things in life that no one else can see. I have grown up and for that I am thankful!

When Fibromyalgia joined the mix…I won’t lie I was even more unhappy thinking that wasn’t RA/Lupus enough? But you know again, I have seen so much more realizing that I (and many others) despite how great we look…might have serious pain. I realize that my Fibro fog is real…and there are things I have to do in order to be successful despite the fog.

So the passing time has shown me there are many things I am thankful for but I am most thankful for the growth I have seen in me.

 

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!