Days flying by!!

Wow the time flies by…I just realized that the end of 2014 is about a month away! WOW! It feels like 2014 has flown by! There have been MANY MANY MANY life lessons in 2014. I have finished my last year in my doctoral program, I have passed comprehensive exams, I have defended my dissertation proposal, and by the conclusion of 2014 I will have an entire draft of my dissertation done! WOW!

Not only that but I have found a new rheumy (twice), and I have started self-injections of Enbrel. I hoped to put off biologic medicines but it was not to be. I have also gone through Imuran and moved back to Methotrexate! Amazing what a year can do for RA/Lupus (Rupus as my rheumy says).

And I have also am now experiencing what might be another effect of the Rupus….cervical/overian problems. I have had an abnormal pap (first abnormal one in 10 years), have completed two ultrasounds, and am now waiting on a bunch of labs. What the future might be on this I have no idea. I know that it feels as if one more part of my body is sick and not working. And it is very frustrating, not only as a nearly 30 year old woman but also as someone who hoped a family might be in the future now that my years of education is over. It has definitely been a new challenge that I can has been part of 2014.

I am also happy because 2014 brought travel to various cities in the United States, including the beautiful cold state of Alaska! 🙂 There is nothing I enjoy more than travel, I enjoyed being able to see some amazing cities this year. I hope that travel continues to be part of my future!

And the last addition of 2014 that I can think of at the moment is the transition from student to professional. Instead of planning my next year of coursework, I am planning my next career, or my next city! Yes that part I would say is one of the most challenging (next to health). It has been 11 years of being a student, it is hard to think of where I will work, what city might I have to move to in order to get a job! If we move for me to get a job, what will my hubby do? Where would be a good place to live? Would I be willing to settle for a job just to have a higher paying job? Would I move for that job (that might be ok but not THE job) simply to have a job….but again what about my family? These questions and more are only some of the thoughts that have settled in my brain over the past few months as the reality that school is ending (YAY!) and life post school is beginning. I’m excited to see what will happen, I pray that I will be strong. I pray that my faith will hold me! I trust that my faith will keep me strong in all the things I have experienced in 2014 and all the things that are coming in 2015!

Catching Up

I’ve been meaning to play catch up here but my cold that grew into a sinus infection/double ear infection ahs slowed me down. Thankfully I was able to see my dr. before the Thanksgiving break..but the meds are slow in working. I’ve missed Enbrel last week and will be missing it again this week. You don’t realize how much you are helped until you don’t have your medicine! Two weeks with no meds has been rough.

I had hoped the medicine would be working by now, and while my ears don’t hurt as much….I’m still no where close to where I want to be. Lots of sleeping, watching TV, and resting for me. I’ve been slowed down in my writing, although I do have all my analysis done which is a positive! Now I’m just working on writing up the results, and then will work on the discussion.

I’m not 100% sure but I don’t’ think the final chapter will be even 10 pages. It is a different chapter 5, than most traditional dissertations. That is because Chapter 2,3, and 4 have been self-contained studies of their own. So it is not as if I have not written discussion/future research. I have done that for each study so this final chapter will be more concluding thoughts etc.

So yes, hoping to feel better so I can write more 🙂 Hope everyone had a great Thanksgiving!

Brr it is cold outside

I tell myself my favorite time of the year is when it is right between fall and winter. The weather is cool (not too hot) but also not too warm (nothing like the dog days of Houston Texas right..). Today was a cold day, I think we were in the 50’s but I caught myself enjoying it. Am I preparing mentally/physically to hopefully be in New England one day? Today, as I was walking back to my car I realized wow…how things have changed. My first few years in this country, I HATED the cold weather. Likely in part due to the fact it took a few years to get a good winter wardrobe, learn how to layer, and see the awesomeness of boots/scarfs! 🙂 Today, I realized maybe to some extend I have become acculturated…I like the cool weather :)…progress.

I had a great appointment with my rheumy. She and I talked about my progress on Enbrel, she agreed that long-term Imuran is not a great choice. She admitted it is not a drug she likes to prescribe, that is something I have heard before. The side-effects of Imuran can be really rough, so she did move me back to Methotrexate. Back to the oral chemo I was on when I first started. However, she is confident that the Enbrel/MTX combo will be good for me. On one hand I am not looking forward to MTX hang over days, it is going to make Friday’s the most dreaded day of the week! I will come home from work, take my Enbrel and my MTX!! Although likely, I will take half my dose on Friday night and half my dose Saturday morning. But I still remember the nausua, the stomach cramps, the exhaustion, and so on. But you know, since this is a long term (i.e., chronic disease) I need to be smart about the medication. While being on chemo long term is definitely not what I planned, if it is the worst of two medications then I have to think about the better choice.

I also have contacted the Arthritis Foundation of Houston. I have been searching for a hobby, I am hoping that I can plug in somewhere, a place or activity that can put me in a position to advocate for more awareness of Rheumatoid Arthritis, Lupus, and Fibromyalgia. It is 2014 but these diseases are still NOT known. People can be so clueless and if I can be instrumental in bringing awareness I want to do so. So we shall see what happens in the months to come.

Off to work on my results for Study 3 🙂

Improvements

I received a notice from WordPress….my blog has been going since 2011…wow seems like forever ago. They let me know with a pretty email and a small award :). When I started blogging, I started to find a way to think out loud (or on paper) and to find others who like me experienced pain that no one can see. I was unsure when I started how it would make me feel or if it would help me. My background in Counseling, I figured that journaling was a technique that I appreciated..so blogging was similar. Except of course, that words would be out there for others to read, instead of locked up in the privacy and safety of where ever I would keep my journal.

I have loved this opportunity and I have enjoyed sharing my life with those who read this blog. I have traveled the world, graduated with a master’s degree, started a doctorate, and now that doctorate work is winding down. So much has gone on these past years, I started with Plaquinel..and have moved on to Enbrel/Imuran combo. I had points where I could barely walk/dress myself and then days I could travel to Alaska. In a way it is cool to have a place that I can go back and read what life was like over these past two years. It is a place where I can see my highs and my lows.

Tomorrow, I see my rheumy for my second visit. This rheumatologist is my third rheaumatologist. She is re-running labs and hopefully keeping me on Enbrel. While I had the burning sting of the shot, it makes me feel so much better! Pain is gain (oh so true!).

I am also working on limiting my caffeine (random yes!!). I have been a MAJOR caffeine addict these past few years in school. Having to stay up soooo late at night to work, I grew to depend heavily on caffeine. But now I’m working to drop so much caffeine..maybe two a day 🙂 A good goal at least. And I’m drinking more tea vs. soda too. You only have one life and I’m realizing the value of a healthy life. I walked yesterday, not too long but close to 15-20 minutes. First time, I have walked in a while. I’m also thinking of going back to Yoga. I love the stretching and the relaxation..and now I don’t have the excuse that I have homework. Darn!

I am making progress on my dissertation. My IRB was approved two days after I defended my dissertation proposal. I have written the results section for Study 1, and I drafted the results for Study 2 this week. I am hoping to draft the results/discussion for Study 3 this week. And then next week I will work on my conclusion chapter. Then I will be working on edits..which will likely take a while. My goal was to set myself up for a final defense date either in January or February. I have to apply for graduation in Feb. (yes the date is on my calendar so I don’t forget). It is exciting that I am almost 95% sure I will walk in May. I know things can happen with research (Geez, I’ve seen my share) but I’mm praying that all will go smoothly.

But then with the termination of classes and being dissertation only comes the student loans!! Argh! I sent FedLoan my application for Income-Based repayment. While I had hoped the standard would be fine, at my current job it won’t be. Granted, I am working hard to get a new job (a doctorate-paying job)…it is not a fast process. I love where I work but I know that I need to move up professionally too. And that new job will hopefully make it easier to go back to standard repayment. The less years I pay back student loans the better!

Yes life is changing! But again, I’m happy that maybe for some one out there..reading how life is with Rheumatoid Arthritis, Lupus, and Fibromyalgia…helps. I know it isn’t an easy life but my one goal was to share to those in my boat…that life doesn’t end when you live life with these diseases. It feels like it will end, but it certainly doesn’t have to. Until tomorrow friends 🙂

Those days!

Have you had those days where you feel frustrated that you have an autoimmune disease that does what it wants when it wants? Sometimes I find myself angry at how little control I have over my RA, Lupus, and Fibromyalgia. While I still get things done, I have all but realized setting appointments/dates/plans are just almost impossible. Why? Because it all depends how I wake up in the morning!!! Frustrating yes?

Some mornings, I can get out of bed and get to things. Other mornings I wake up and realize..I can hardly move much less get dressed, put on make up, etc. The pain or the fatigue are mind numbing so I sit in bed for a few more minutes. All the while mentally seeing a clock countdown the hours before work. I know every second I’m in bed is one less second I have to actually push myself to walk out the door.

Exhausted I wake up, get off the bed, and start my day. I grit my teeth in pain as I open drawers, pull clothes off the hanger, and try to clear my brain fog. And yes I grow frustrated by how I always hope, maybe tomorrow it will be just a bit different.

Don’t get my wrong, the Enbrel has helped…where I used to have to come home and take a 5hr nap…I can now home and rest (sometimes nap) before I get to moving. I’m just not sure Enbrel and Imuran are doing enough. I see my rheumy on Monday, I hope to ask her about going back to MTX…it wasn’t enough back when but maybe combined with Enbrel it will be enough.

Am i grateful I can move today…yes I am…I know others who cannot or even today are in the hospital. So yes I am….but I am still tired and frustrated! But I am going to try and start my day over refocusing on what I did get done this week/today versus letting myself get frustrated by what I didn’t get done.

Positivity…trying to be positive 🙂

Finally updating

It has a crazy week!!! Last week we had a major sick Bruce and this week was crazy with all things. Monday, Bruce and I spent all day at a speciality vet (internal medicine), and it looks like after running a bunch of tests….Bruce’s Crohns (sp?) was all but confirmed. Bruce was switched to a hypoallergenic dog food and a low dose metronidazole to help keep the symptoms on his Crohns at bay. Most of last week Bruce was lethargic but over this weekend he is acting more like his normal self.

On Tuesday I was off work, I had planned to take the day off to do any last minute things for my proposal defense. It was a good and much needed day to rest. I read through my entire proposal one last time and then I made sure to get to bed early. Boy was it hard to sleep I was so nervous. But I did get some sleep.

I woke up and got ready. Hubby was coming too and we made sure to get some awesome morning medicine (I.e., Starbucks)!!! we made it to campus in good time and I had about an hour to make sure my room was ready and that I had no technical difficulties. I only almost fell once!

As it got closer to noon I was so nervous! But I was able to start one time and I gave about a 20 minute presentation. Then my committee and audience ( about 5 students and then my hubby) asked questions. When I went I was expecting to make changes so I had taken Thursday off. But when I talked with my committee they had decided to accept my proposal as it was with no changes! Yay! I came home and rested and vegged in front of the TV.

I worked Thursday and Friday, making sure my IRB was submitted and Reference checking. Then yesterday hubby and I went to our annual alma mater football game. We had fun sitting three rows from the 10 yard line. Got some awesome pictures of my mascot 🙂

My new goal is to have my results written and a final draft to my committee by dec 1. Would be great to have a final defense scheduled before Christmas! May graduation looks to be on schedule! Hurray!

This week it will be writing and keeping up with everything. I see my Rheumy next week, we are running a new lupus panel and RA panel. I’m interested to see how enbrel is working. I might also ask to go back to Mtx. I think I might like it better than my imuran. We shall see.

All in all, a great week! Xo

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