I went for my 3 month appt with my rheumatologist. I was happy to see her especially because I have struggled with the Arava side effects. After a short discussion, she told she recommended seeing an additional specialist and she wanted me to stop taking Arava and move to Imuran.
I can say that appointment was not everything I wanted it to be. I walked away on two new things (Biotin 5000mg and Biotene mouthwash) and Imuran. I’ve taken two of my loading doses……def not good. I feel like I have mono hung over. I’m hoping this eases but one major positive is that I’m not I’m classes this week! Yes!
I laughed when the pharmacist was like….live in a bubble!!!! Hahahahahha I am like how??? But we are praying this new med helps! I’m seeing more doctors on Friday! Yay!! But a good thing, I’m highlighting my hair to help perk me up!
And since I’m bouncing everywhere tonight…Maybe it is just me but sometimes this journey feels sooo lonely! I texted someone after my doctors appointment and the response was “k.” Simple…nothing else…I guess I expected more from this person. It just further makes me sense that sometimes this painful life is lonely. So many people don’t get our journey. But yet we can still find those few and far between gems.
I found someone who I have actually never met. But she encourages me so much, we are on the same journey. I know this week she and I (within a day) started new meds. To be able to text someone and they get it….amazing!!
If you know someone who is on this RA/Lupus/ Fibromyalgia (or another invisible illness) be understanding, be supportive, be encouraging and above all listen. We desperately need people who understand and encourage us.
If you have an invisible illness (RA/Lupus/Fibromyalgia) be encouraged to share and connect. I always love meeting new people. Thank you for all who encourage me! You are truly awesome!
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
It is such a great feeling to say that SPRING 2013 is DONE!! The last paper has been submitted to my professor…final grades are to be posted by the 13th…and now I can come home tomorrow and say I”m done! My goal is to rest for a few days…to regain some of my energy and then back into the research I go. I have to prep a study for publication and conduct a few more statistical analysis. And then I am prepping this study to go on to round two. I also want to find some good quantitative studies for a secondary analysis project. So yes a lot of things to do but it is nice to do it on my schedule and not on a time table for class.
The summer holds a second round of statistics and an internship class. Both will keep me pretty busy but I hope that they both won’t be as hard as my first summer in the doctoral program. Boy was that rough! If I keep my nose in the books….I should be ok… I hope!!
I am proud to say I’ve finished this semester…despite the Rheumatoid Arthritis and Fibromyalgia. You know the days that are so hard to get up…the days that just getting dressed and brushing my hair…those days where just doing those small things is just unbearable. The lack of sleep…the studying…it is good to know that it is worth it. This time next year I will be finishing my VERY LAST class! YES my very last classes of more than 10 years of studying! WOOHOO!! That is a major plus…that is what keeps me going!
So tonight I am off to rest and relax…so very thankful that I managed to finish this round of classes! I did not do it alone… I did it through the love and support of my husband, my closest friends…and of course my Molly, Precious and Pepper! If you think because you have RA and Fibro that you cannot have a life…you are mistaken. It will not be the life you want…it will be a painful life…but if can be a life that you still accomplish your dreams. One slow step at a time! I encourage you to remain focused on something that gets you up in the morning! The days you feel so alone (because yes we ALL have them) seek out a friend (email me) and get through that dark hard day. We can still change the world! We will change the world despite our INVISIBLE ILLNESS!!
#spoonie, #squeaker, #fighter, #Icandothis! And much more! Tonight is to us…we all fought this road together…congrats to finishing this semester, these past few months, the past few years…lets see what the summer holds for us!
Almost to the finish line!! I sat in my last class of the semester on Wednesday…boy did it feel good to leave the campus and know I wouldn’t be back until June!! Now I have finished my first draft of my completed paper that I will be turning in on Wednesday. I have a few more corrections to make to it and then I will turn it in for a grade. AND THEN I will keep working on it…getting it ready to get it journal ready and ready to add more to it over the summer. I have already contacted people to do round #2. YAY!
I will also be working on my first study to get it journal ready. I have to redo some tables and cut/edit/add a few things. My goal is to have it ready for a conference proposal that unlocks in May and closes in July. I want to get that in!! AND THEN off to work on another proposal that is due in September. YES a busy few weeks before classes begin again.
But before then I will get this paper finished, and off to my professor. Then I will take a night or two to rest!! My hubby and I went to celebrate at Outback last night. It felt good given the hectic day(s)/weeks we have had this semester.
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!
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!!
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!!
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.
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! 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!!
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