Wow. I had adjusted to the fact that I now have to take Orencia and actually even got excited because of the great reviews. Being able to bend at the knees? What?!?! Having my fingers, wrists, and ankles shrink back to normal size? Shut the front door!
Then, life decided to kick me in the teeth. The CT of my lungs came back. Guess who has interstitial lung disease? You want to know when it started? I can tell you exactly when. I was in the freaking hospital, telling all of the doctors who came in to check — the resident, the interns, the rheumatologist, the gastroenterologist, the med students, and the nurses — that I had shortness of breath. I told them at follow-up appointments that my lung capacity still wasn’t back to normal. The response? Are you doing those breathing exercises we talked about?
If they had just listened to me and taken me seriously, they would’ve ordered that CT scan and the disease wouldn’t have progressed as much as it had because we could’ve taken steps together to help stop the progression. If they had freaking spent the money to get the Orencia for me, we could’ve stopped a lot of the deformation of my joints. But no. It’s all about money for them.
Thank God for One Medical Group, Stanford, and Aetna. They seem to take my health and quality of life seriously.
Yesterday, I thought I was mentally prepared to go in for my follow-up visit with the latest rheumatologist. Apparently I was not. I knew that she would be prescribing meds for me but it still floored me. I am now supposed to be on Plaquenil for the lupus and Orencia for the arthritis, etc. I stayed calm-ish in the appointment but on the drive home I began sobbing.
I decided to not go into work today because I was unsure if I could concentrate. I hate, hate, hate medicine. I really don’t want to take this medicine but it’s not getting better. I’m a lot better than I was a couple of years ago but I’m still not functioning very well. Exercising is so freaking hard with the pain which then results in me giving up.
I’m trying to look on the bright side. Once the orencia gets approved through my insurance, which can take a while, I’ll start taking the meds and then will hopefully be able to exercise a lot more. The doctor warned me that it may take a bit to go into effect and told me other things about the medicine that resulted in me being sad as well, but I just have to keep moving forward. I have to believe this is for the best.
Well, I got nudged by my cousin today and realized that I haven’t updated this oh-so-fascinating blog since Christmas. So, here goes.
Things have been a bit hectic. I have class every weekend this month except for the last one. They’re very light topics: child abuse assessment, spousal abuse assessment, and death and dying. See? Light! Lord. This weekend was the Death and Dying intensive. It’s interesting to see how I get affected emotionally but don’t realize it until it comes out somatically. For me, it was a major headache and a pretty high fever today. I drugged it up in order to get through class b/c I refuse to take it again. LOL I slept through lunch while the rest of the class went out. I didn’t know I had actually fallen asleep until my friend came to wake me up.
What else? Oh! I’m on the hunt for internships. I’ve had one interview so far and am scheduled for a group interview with a different place on February 22. Tomorrow there’s an open house at yet another place. It’s pretty insane. I just hope to find the best place for me. I really wish I could do an internship at my job but it doesn’t look feasible at this point.
On a different note, I’m seeing a new rheumatologist. I actually have some hope this time b/c she seemed to run a lot of tests that my previous specialists didn’t do, including one specialized blood test that involves heating up the file. They seriously took over 20 vials of blood. I stopped counting after 15 but I know there were more than 5 left. I have difficult veins but the phlebotomist got me in one stick!! That was exciting. Now it’s just a waiting game. I’d really like to feel better.
Merry Christmas, Everyone! I’m one lucky gal and had December 24-26 off. I was meant to go into work tomorrow but we’re still overstaffed due to the second office being way behind schedule.
Family from England and Texas are currently here for dinner and I’m entertaining the teenagers by playing movies. They watched Cloverfield and part of V For Vendetta before dinner and are now watching the rest.
The pain was kind of bad this morning due to wearing my new arch supports for an extended period of time. They’re for my dress shoes. I’m not sure if they’re really working; I might need to get custom ones made. I’d rather not, though, because the podiatrist I saw actually sent these to me for free which was quite nice.
I ordered a large quantity of Tibetan Baicao Tea and it tastes different from the last batch, which is weird, but it still works, and that’s all that matters. I’m also planning to try some other natural remedies which will hopefully help. I’m supposed to start seeing a new rheumatologist soon. I don’t have much hope because they’ve never been able to help before due to the complications with the other diseases I have (which make up my official diagnosis of Mixed Connective Tissue Disease). We’ll see what happens.
This latest case I’ve been dealing with is quite complicated and is not only taking up a massive amount of my time at work but is also draining me emotionally. It has me questioning my ability to be a successful MFT.
I very much need to work on my boundaries (not letting others cross them and take advantage so easily) and I also need to work on not taking on other’s issues. Yes, I’m here to listen, but no, I’m not your punching bag. I am not the person you get to yell at for everything. No, everything is not in my power. There are external forces to consider. I understand you are stressed, but I am doing everything I can. I cannot do anything more.
Oh, female hormones, how you slay me. Once a month, you make me get all weepy & ridiculous. This past Thursday, you induced a panic attack. I was able to hide it during my class until one of my classmates said something that normally would’ve rolled off my back, but this time pissed me off because of the mood I was in. I gave her the mother of all death stares and it was really hard to stop.
I was also panicking because I am running low on Tibetan Baicao Tea and was having trouble finding it. I finally found a merchant and will hopefully be receiving it next week.
It was recently my birthday. All my coworkers signed a card for me and gave me a piece of cake. Last night I had a vegging out night with some of my friends and tomorrow night I will be having my family birthday dinner. I’m glad next week is Thanksgiving because it means it’s a much shorter week.
The pain has been more difficult to bear with lately and I think it’s the weather. I’m just in the mood where I’m tired of fighting and kind of want to give up. I won’t, but I really want to.
I realized yesterday that starting today, I’m in week 6 of my classes. This means that I’m over halfway done with the quarter which also means that my papers and presentations are coming up. I have a paper due on Tuesday, a project and paper due week 7, another project week 9, and then 4 papers due week 10. Ack!
I’ve gotten so lazy on the weekends. I had planned to work on both the presentation and papers yesterday but that didn’t happen. Also, since I realized that I only start work at 12 tomorrow as I have an influencer event in the evening, I’m having a hard time getting started on my paper today — the one that’s due Tuesday. I just have to get my butt in gear. It’s not that long of a paper. I already got the book out of my car (since I’m at my friend’s apartment).
It’ll be nice when this quarter is over because then I can figure out what projects at work I’m passionate about and which projects I want to pass on to other people. I figured out that most people at work have 1 or even NO projects, while I have 2 big ones that take up a lot of time and 4 smaller, but still pretty big, projects. I’m going to stop being a brand ambassador because I feel obligated to go to these events, and honestly, I don’t have time. I need to spend more time reading for school and finishing my work. I need to learn to say no.
I need to pay more attention in school. Last year, I was always so on top of what needed to be done. Now, I find myself scrambling the beginning of each day to see if I forgot to do some homework. I spend my weekends relaxing and doing fun activities with friends, which is a definite must, but I also need to put in some effort to finish my work!
We’re almost at the end of week 4 which means week 5 is next which equals HALFWAY THROUGH THE QUARTER!! I’m loving my classes this quarter and I’m glad to be back with my school cohort. I’m glad we’re all on the same page, too, about having time together outside of school but not TOO much time. I can only commit to one event a weekend, and even that can be a bit much. I see them 3x a week already! haha
Arthritis has been flaring a lot more these days because of the weather, but I’m determined to stay positive. I’ll just keep drinking my tea and make a concerted effort to get up and move a lot more at work. Sitting still for too long is not good for anyone, much less for someone with joint issues.
