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.

Long overdue, but I'm back

It’s been a long time since I’ve written here. I’m sorry for that, it’s just that life has gotten hectic for me. Between being ill, exhausted, anxious, and trying to re-focus on wedding planning, I didn’t have the energy to write a proper entry. But now things are starting to level out and I hope that I'll be able to write more regularly again.

Health – I’m feeling a lot better, but I’m still extremely tired. I’m pretty sure I had a flare-up last week, which started on Tuesday evening with burning pain in my legs, pain behind both eyes, and dizziness. That continued into Wednesday, and by Wednesday evening my legs were burning so badly that all I could do was cry. My eyes also went blurry and by the end of the evening, I couldn’t make out my own fingers in front of my face. It was scary, but temporary. I got a last minute appointment with Dr. Friedberg last Friday and he confirmed that everything I was experiencing was MS-related. He told me to try to take the gabapentin more often to reduce the pain and REST. I’m still having a problem resting. I’m always so tired that I start to mistake it with laziness and end up pushing myself to keep going when I should try to take a nap. ::sigh:: One day I will learn to rest.

Medicine - Another good thing about seeing Dr. F was that we decided on my next injection therapy. Although I wanted to stay away from the interferons because they all list depression as a side effect, he strongly urged me to try Betaseron. We looked at the research and side effects and I finally agreed. He reassured me that if it doesn’t agree with me, I can change. So, I signed the paperwork and he sent off the information. I can say that the Betaplus people are incredibly fast because my start up kit and first month of injections arrived yesterday. I also spoke with my Betanurse today and she’s set to do the injection training on Sunday afternoon. Unfortunately, they don’t do the free first month, but the rep automatically entered me in their financial assistance program, so I’ll pay $50 a month. I think I can manage that.

Money – I’ve been incredibly money stressed over the past month. Because of the disability check timing, I made it through the whole month on only 3-days worth of payments. You can probably imagine what’s been going through my head with rent coming up and no check every time the mail comes. Luckily, one arrived today and we went directly to the bank. Phew, I’ll be able to sleep tonight.

Friends – I am happy to report that I’ve been seeing friends more often lately. Yay! It has really helped my mood and has meant more days in street clothes. Thanks to my friends I learned to crochet hats, visited a corset shop in the city, and reconnected with an old friend. I’m looking forward to more of this. Next time I need to spread it out some so that there is more time to rest between visits.

Fatigue – I’m so tired folks. More tired that I could ever imagine. And it just hits me without warning. I’ll wake up feeling well, get dressed and ready to go, then suddenly I feel like I just took a double dose of sleeping pills. Or, I wake up and I’m too tired to get dressed. I never realized how much energy it takes to shower, do my hair, or even brush my teeth. I’m at the point where it takes me like 2 hours to get dressed because I have to sit down the whole time. It makes me sad. Oh, and despite being completely exhausted, I still have insomnia.

Housing – I like the new apartment. It’s small enough for me to clean, there’s room for a garden, there’s a fitness center so I can stay in shape, and there are pools (even though I haven’t been in them). I don’t like that they are remodeling the apartment directly above us. I hate that they didn’t tell us that it was going to happen. I was so angry when I realized what was going on. From 8-5 everyday, there are random periods of loud construction noise. Usually, this noise starts up at 8, stops for a few hours, and then goes from 1-5 (when I try to lay back down to nap). This means no daytime napping. ::sigh::

Wedding – Last weekend we met with the florist at our venue. The appointment went well and she sounds like she’s right on track with what we want. We’ve started getting response cards and gifts already, so the weight of the upcoming event is starting to weigh on us. We have less than two months left and time is moving extremely quickly. I hoping to start working on the favors/place cards soon. Today we took Nilaja’s dress in for alterations and we’ll pick it up in a few weeks. My dress doesn’t actually need any alterations, but we will need to take it in to be bustled. I’m really excited!

I'm sure I'm missing something. Please feel free to comment here if you have questions or want more information. I'm not going to post a Free For All Friday post today, but may start that up again next week.