Tag Archives: fibromylagia

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! :)

 

First Day of SPRING BREAK!!

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First day of Spring Break!! YAY! Of course my first day had to be one when I was sick to my stomach all day and curled up on the couch from pain! Really?? Well not that day I would have wanted but at least I got to stay at home and catch up on some shows…including Dallas (just hit Netflix!!). SCORE! So I have a whole schedule of homework planed! Although today was my ONE day to do ZERO homework! It feels great!

Tomorrow I have some reading to do, a powerpoint to work on, and then a paper to edit. My IRB‘s were approved so that means after Spring Break I can start working on my project! YAY! I’m excited…nervous..scared..but thrilled to be getting to this point in my research. I also will be presenting a chapter to the class on the 27th! WOW! Another ahhh moment but again working on my confidence and of course making sure I’m ready.

I have realized how Rheumatoid Arthritis impacts my eyes….my eyes are soo dry (officially Chronic Dry Eye —-I think Sjogrens). I wake up every morning and my eyes feel like sandpaper. I’m walking around with drops all the time and I have noticed that my vision is changing :( . Isn’t that sad! It is just another note to people who go “oh that is just arthritis.” Rheumatoid Arthritis is NOT just ARTHRITIS! It is so so so so much more!

My Fibromylagia decided to not be my friend today either! Don’t you love waking up in the morning and your hands/feet/legs have such pain!! Ahhh oh pain please leave! I think somedays that is my thought from the moment I wake up until the moment I go to bed!

But you know it is encouraging that despite pain ….people are accomplishing so much. I have met such inspirational people….people whose stories are so incredible. Maybe one day I can start sharing their stories….I will say those of us with RA/Fibro/and ever other invisible disease….we have strength! We fight hard!

 

 

Oh Time you fly by me

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Time just flies….at least that is how it feels to me! I’m working on so many different projects and for some reason I am sitting here just thinking…wow time flies! But you know one of the best thing someone ever told me was that time is going to fly by regardless of what you are doing….so why not let time fly by and you complete a doctorate degree in the process. It sounded….so cool at the time…now I’m realizing yes it is cool but it is also…..very tiring!

I was up until 2a.m. this morning…waiting for sleep to come…and partially because I took a late late nap. For some reason yesterday I got home and my stomach hurt so bad (nausea ..thanks Arava) and I just needed sleep. I got about 3 hours or so and then I managed to get up and work on some papers. I am sooo happy that today I am off work!! YAY!! It was a surprising day off…and one I am taking full advantage of! I slept in until about 8:00a.m., took a shower, got ready for the day and now I’m working on editing my homework. But yet time seems to still be going by me soo fast!

While I was getting ready this morning I could not help but think about how slow I go now with my  Rheumatoid Arthritis. My hands do not work as well as they used to and I just do not have the same energy level. I was thinking back to when I was a kid and I could run around and do things. I would pay major money to wake up with energy. Most days I wake up and I feel as empty on my energy level as when I went to bed! Ugh…thanks RA and Fibromylagia! Ya’ll are soooo not fun!

So if time feels like it is running by you…know you are not alone! :) I hope that this week…despite how fast it seems like time is flying by …that we stop and appreciate the good things. The good people that encourage us….the friends that stop and check on us…and the encouragement we receive by the many on our social media sites! I know I’m thankful for the people that check on me…that encourage me…and that stay connected to me.

 

 

 

 

Another day in bed paradise!!!!

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Yes another day in bed paradise! It was pouring rain outside so that made it nice to sleep….at least I did not have to drive in icky weather! :P (trying to see the positive right!). This morning I still had a low grade fever, my sore throat is better, but I’m a little concerned with how my chest is feeling. It seems like the cough might be getting worse? Not sure, could be paranoia…but I’ll be safe just in case and am staying home. Tomorrow would have been my last work day so I sadly missed a full  week! :( It stinks but one I need to rest and heal and two I hate going into work sick. No one else should catch any one of the three things I’m carrying THAT’S FOR SURE!

I’ve found some very interesting things about the flu virus! Check out my facebook page (www.facebook.com/stlraf) for the links. Seems like the flu is going on like wildfire! Hmmm that’s good to know! Also found some other good things about RA and working. One thing I’m looking forward to finding is additional information on having fibromyalgia and RA. I know a lot of us don’t have just one or the other…we have them combined and then some. I know my Fibro, for the first time today…was NOT flaring! I take that as a sign that my body is healing. My goal is to be back on Lyrica as scheduled today and then Arava maybe sometime next week. I’m going to see how I do this weekend and then test the waters. I want to get my body over the sickness but I don’t want my immune system to perk itself up too much…such a line to straddle! :P

Food is still not seeming appealing. I’m sure with the flu/sore throat/strep/cough you know that food tastes different etc. I tried applesauce last night and it tasted gross. I had a salad but it didn’t settle in my stomach. I checked the scales and since Saturday I’ve lost about 6 pounds! Not surprised I haven’t eaten more nor been too hungry. But hopefully I can find something yummy and greasy to eat! :)

I’m getting excited my goals for this weekend since I will be feeling better (YES I WILL BE) – going to re-dye (yes self-dye) my hair with my Black John Frieda foam (http://www.target.com/p/john-frieda-precision-foam-colour/-/A-13944196?ref=tgt_adv_XSG10001&AFID=Google_PLA_df&LNM=%7C13944196&CPNG=Health+Beauty&kpid=13944196&LID=PA&ci_src=17588969&ci_sku=13944196), and then I want to get my nails done at my favorite salon. If I can get those two things done I’ll be sooo excited for Monday. You know starting the week out all cute and refreshed. I would also like to re-stock on some makeup at my favorite store, Sephora. We will see though how my energy holds up!

Tomorrow, my goal is to hopefully be able to start reading ahead. My classes have not been uploaded so I have not yet seen my syllabi BOO!! But I figure it cannot hurt to start reading ahead. I already know which project I want to work in on my qual class so that’s good. I’m going to keep working on my quant study to see how I can combine the two. So no progress lost! I have two books to read, I figure if I can get a chapter or two read now maybe I can stay about a week ahead. That always helps me during the semester! And hoping tomorrow my classes will post :)

Off to rest some more, thanks for keeping up with me :)

Adjusting!

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I will have to say the word adjusting does not cover the first week being back on Arava! If you are on it or have been on it you probably know what I mean! The nausea, the bathroom issues and the major exhaustion! I also think my Lyrica is making me slightly dizzy although that is improving! I would pay money for my stomach to feel better! Gosh it does not (and has not) felt good since Tuesday!

Although my hubby and I had to go to his company’s Christmas party and it was one of those…if you did not eat anything..people would wonder. So I managed to eat a bit there…although maybe this is just me but I have tended to get cravings. I can go all day with out being hungry and then I’m like gosh I some ______ (red doritos etc.). Yes I am weird!

So you might be wondering…why complain if for about a year all you have asked for is meds!!! Yes this is true! I am 165% thankful for my medicine. I guess I am true to the saying “never happy, if you have curly hair you want straight…if you have straight you want curly.” Essentially yes I want my treatment SO BAD…mostly because I know that despite the bathroom issues/the nausea/the hair loss..it is WORTH it! I had some initial reports from my labs come back…my CRP one year after medicine is 25!!! Two years of treatment it was 3! So yes worth it!

BUT the medicine does suck!!! Anyone on it can tell you it sucks but it the trade me make! I know people who do not go on it, or go on it and realize hey no way man. You cannot fault them….either choice is a painful/tough decision…one where no matter the decision there will be pain!

And my last thought of the day was remember to look people in the eyes. Remember to LOOK at people! Maybe the person next to you is going through a similar journey! Maybe they just want someone to understand. I know I am ‘excited” (not really but yes I am) to find another squeaker/spoonie! Why?? Because we understand each other! That is soooo valuable!

Two more days and I am on vacation!! And then…a trip :) YAY!