Grateful.

I'm having a really bad day, but I don't want to talk about it. It's so easy to get bogged down with how bad things are and completely ignore the good things in my life. So, I decided to make a list of 10 good things in my life and all the ways I am grateful.

1. My wife. I feel happy/lucky/blessed to have someone who supports me through everything. Things have been rough over the past few weeks and she always steps up in more ways than I could ask. I especially appreciate all the shopping she does as I still don't have the stamina for a trip to the grocery store.

2. My mother's condition is treatable and follow up appointments yielded lots of favorable results. Once again, I don't have consent to disclose her condition, but I can say that my whole family is breathing a sigh of relief. The issue isn't resolved, but we have more answers and she has an excellent prognosis.

3. My sister. I talk to my sister a few times a week and it's a necessary mood booster. We also have very similar beliefs and morals, so if something is bothering one of us, it's easy to rant and release frustration.

4. My friends, especially Sophia, Susan, and Jamie. I think I've mentioned before that it's hard for me to ask for help and I like to do things for myself. Unfortunately, no matter how much I want to be the self-sufficient control freak, I am now facing challenges that require assistance and I'm grateful to have people around me that can help me when I need it. I appreciate all the help and support whether it was providing rides, company, information, reassurance, or advice.

5. My cane/crutches. Most of my problems lately have involved mobility and I'm grateful that I have my cane and crutches. Without them, I wouldn't be able to get around the apartment.

6. Betaseron co-pay assistance program. I'm back on the injections (boo!), but recently received confirmation that I have a $0 co-pay each month. Previously, I paid $50/month, so this is incredible.

7. Decaf coffee, peppermint tea, and baked potatoes. All three have made me exceedingly happy today.

8. Sleeping aids and techniques. Never underestimate the power of a full night of sleep.

9. Critical reading material. I mostly read online articles and love anything that challenges racist, sexist, ableist, sizest, homophobic, transphobic, and xenophobic aspects of society. I especially love having Facebook friends that link me to articles that keep my mind alive (though, I wouldn't mind not having things to read).

10. Health Insurance. I'm not sure what my life would be like if we didn't have health coverage. The coverage isn't perfect and I still pay a rather healthy amount out of pocket, but it's a huge relief to be able to go for care when I need it and not worry about footing the whole bill. We were uninsured growing up, so I know how detrimental the fear of medical bills can be on any family. I can't imagine going through all this without coverage.

1 down 2 to go

The Solumedrol infusion went very smoothly. The nurse, Carol, was super sweet, informative, and thorough. I felt so comforted with her. My friend Sophia chaperoned the whole event and keep me laughing and talking. Carol was also really open and inclusive with her, which is rare but made us both happy. Carol also suggested I bring the same friend each time so that she can help track changes and reactions, and Sophia was more than happy to oblige. I was there for about two hours if we include registration and all the orientation stuff, but the time flew by. Since my veins were being really wonky, I asked her to leave the hookup in my arm, so tomorrow whe just needs to hook up the bag.

Unfortunately, I haven't had any symptom relief yet. That's a little frustrating, but expected. I do have the weird bitter metalllic taste that is common with taking steroids, but it's not too bad. Most food covers it and I've been sucking on Werther's in the interim. The nurse also suggested that this would make me want to eat and that is definitely happening, despite my post-meal nausea. I'm hoping to just head to bed soon, so I don't spend the whole evening munching. Surprisingly, I don't have excessive amounts of energy and am quite exhausted. That just another reason why the bed is calling my name. (It's also why this whole post is poorly formatted and more me just running off the details than explaining the day.)

Oh, we did my fifth injection today and instead of me doing it on my belly, Nilaja did it in the back of my left arm. I've gotten really good and fast at it, so the whole injection process is painless (literally and figuratively).

There is one strange thing that I need to keep track of, I'm running a fever. It's low-grade, but I had it this morning and also before my injection. I'll stay on top of that and contact my doctors if it doesn't go away, but I'm not worrying about it yet.

Overall a good day

I'm currently experiences a very scary symptom. For over a week now, I've had pain behind my eyes. Dr. Friedberg said that it was a common MS symptom and nothing to panic about. Then I wake up yesterday and my eyes felt weird. They kept watering and felt like they were covered in a thick layer of goo. My vision wasn't compromised, they just felt weird. Then in the afternoon, while we shopped for household items at Target, I started having weird feelings. It wasn't anything in particular, I just felt odd. As we're heading to the checkout lane, I saw a flash and then a black void appeared in my right eye. It's still here. I can see through the eye, but there is a black line from the upper inside corner to the lower outer corner. This scares me because the feelings I had yesterday and today are the same as when I loss vision in my left eye (which has gotten better, but never returned). I'm trying not to panic, but if my vision hasn't improved by tomorrow morning, I will start making emergency appointments with whoever can see me.

Despite all this craziness, I'm having a really good day. I woke up really early this morning to finish cleaning our apartment, then got all snazzied up to meet my BFF for coffee. I didn't drink any coffee (I'm allergic, not to caffeine), but it was really good to see her and catch up. Unfortunately, I couldn't stay long because I had to meet with the Betanurse today at 1 pm. We do have plands for the near future to see "UP" and I can't wait!

Speaking of the Betanurse, she arrived right on time and was gone in less than 30 minutes. There really wasn't much for her to do because Betaplus send a very detailed video with the training kit and after watching that, I knew how to do it. Although there is some hassle when it comes to mixing the medicine, the actually shot was easy-peasy. I didn't even feel the needle go in and I didn't have to use the autoinjector. I guess all the bragging about having the "thinnest needle in MS treatment" is worth it. I don't have anxiety about future injections.

Now let's just keep our fingers crossed that it doesn't make me sick.

Free For All Fridays: Questions Answered

Good Morning Lovelies! I've had an exhausting but fantastic weekend. Before I regale you all the fantastic details, I should answer the questions from Friday. There were two questions from one anonymous commenter: Do you feel isolated or like people treat you differently? Do you have the energy to see friends anymore?

Yes. Yes. And yes! My thoughts are pretty scattered on how to answer this one. I've always been a loner and I like to keep my social circle small. I'm also a homebody and value time alone. I've always had a mix of concentrated social interaction with a few days to clear my head alone. For example, in college I had classes and a job in the Admissions Office during the week, and on the weekend, I stayed home. On rare occasions I would go to social events, but I typically liked to spend my weekends alone or with a friend or two. This trend remained after college and having a job where I worked 3-4 days a week was perfect. Even though the work was hard and the hours were long, I had time to satisfy my need to be alone and even spend time with friends.

So, I never expected to feel this alone and isolated when I stopped working. I never knew how much I needed to interact with people on a daily basis. Even just getting out to go to a restaurant or sit in a movie theater helps, but for a while there, I was too sick to do that. There is nothing worse than spending day after day with only a few hours of human contact. This trend has made me feel lonelier and more isolated than ever before.

Regarding part two of your first question, people definitely treat me differently and I have become different. I'm not as self-succient and strong as I used to be. I often need help and I think that's difficult for people to see. Not that they aren't willing to help, but it's hard to be around someone who's sick. Whether it's a chronic illness or something acute like a surgery, we treat people who are ill (or not completely healthy) differently. We don't want to make things worse or even see someone we love in pain. It can be hard to control emotions and reactions when we see our friends hurting and some may decide to just stay away. I understand that. As much as I need and want to be around people I don't want to put anyone in a situation that'll make them feel uncomfortable or stressed. I also can't promise that I'm going to be any fun or that my symptoms will remain in check for the whole visit.

But I do want to see/chat/hang out with friends. It really helps my mood and even small interactions go a long way. I don't always have a lot of energy to go out, but people are welcome to come visit. We could watch a movie, do some crafts, or just sit and stare at each other. Hopefully, now that the Avonex is getting out of my system and I'm allowing myself to rest when I need to, I'll have more energy for outings. I'm also learning to plan my week in a way that anticipates fatigue and other symptoms. (I have a lot of plans this week and I'm hoping that my new system works.) And fingers crossed that the new medication (whatever we choose) just makes things even better.

If you, anon (or anyone else), want to hang out with me I have four requests: 1. We have to talk about something other than MS. 2. We have to make plans so I can rest and prepare. 3. If I ask for something or need something (like a restroom or help standing), please know that it's usually an urgent need. 4. Please don't treat me like I'm fragile. It's best for me to manage my own condition and if you try to do it for me, there will be friction. If you're OK with that, message me and we can plan a time to hang out.