Feeling Better

First, thank you for all the emails and Facebook messages. Your kind words were a big help in raising my mood. I promise I will respond to them all, just give me a little time. I was under a pretty dark cloud until Saturday afternoon, but it wasn't anything a bus ride and my favorite surroundings couldn't fix. By Saturday afternoon I was back to my old self. I am also happy to report that after several weeks of not having the energy or drive to do anything around the apartment, I finally got ALL my cleaning done today. That's right, I got all the dishes washed and put away, I vacuumed, I cleaned behind the toilet, and even did some spot removal on our carpeting. It feels so good to be able to clean. I don't know if I've told you all, but cleaning is one of my favorite hobbies. I would rank it right after singing but before cooking (I am so weird). So, it feels good to spend a day listening to podcasts and scrubbing our apartment.

All that cleaning also got me thinking. To be honest, I didn't think about anything new, I just figured out a possible partial solution to a complex problem. Money. Let me tell you, having a chronic illness and trying to maintain some level of wellness is an expensive endeavor. Be it maintenance care (like monthly prescriptions or follow up doctor visits), to acute care (like ER visits or hospital stays), to supplemental items (like vitamins or quality-of-life items), even with decent medical coverage, the costs of trying to be as healthy and happy as possible can quickly become unaffordable. I'm at that point. Well, I was never in a position where I could afford to be sick, but the costs of trying to be as healthy as I can be have surpassed the resources. Between the hospital bills, all the new prescriptions, the influx of doctor visits and prescribed physical therapy, plus all my household bills, the well has run dry.

While, I can't stop treating my illness or seeing my doctors (well, I can but I'm not going to), I have decided to eliminate as much extra stuff as possible. This includes all vitamins and supplements and sleeping aids. I am also going to try to cut down on my use of bladder control pads, which may mean more neurosis, but they are crazy expensive (even the store brand) and if I only use them when I go out, I can stretch that cost over several months. I am also going to speak with my doctors and see if I can see them every 6-8 weeks instead of every 4 weeks. And I decided that for now, I'm not going to do the physical therapy for my shoulder. I know it's important to maintain my non-MS-related health, but PT isn't feasible right now. I'm sure between my network of friends and my awesome Google-fu, I'll figure out ways to help my shoulder. And if not, I can focus on my shoulder after we figure out my stomach issues.

Speaking of stomach issues, I need to call the gastro and find out what's going on with the emptying study and if they saw anything on the ultrasound. I don't know how much longer I can deal with all the nausea. The Prilosec is not helping.

Oh, I also have two new symptoms to report. First, I'm starting to have significant numbness and tingling on my face. It's such a weird feeling and very different from the numbness I feel in my hands and feet. It's only on the right side of my face mostly around my upper lip and usually happens in the morning. Though, it's tingling right now just to spite me.

The second symptom is very distinct memory loss. I've had small moments of forgetfulness for a few months, but recently acknowledged that there are recent events that are completely gone. I'm having a bit of a hard time with this because my memory was once one of my best traits. Now there are lists upon lists upon lists and I still forget. I'm sorry about all the birthdays I keep missing. :-( But it's not all bad. Now that I realize I'm losing some things, I'm spending more time tracing memories and exploring the things I do remember. For example, a song will come on the radio and it'll feel oddly familiar. So, I'll think about it and maybe remember that it's something I heard in college. Instead of leaving it there, I'll try to remember where I was or who I was with, and the next thing I know all the emotions and laughter of the original event are back. (Hey guys, remember "Run by Collective Soul?") I love this. I am such a sentimental-nostalgic-emotional creature and these personal little moments are the best. And by some miracle, these memories are usually really happy and remind me just how much I am loved and love the people that I call family and friends. (I know I'm a loser and don't keep in touch, but I still love you.)

OK, enough sentimentality for tonight. Time for bed. By the way, I'm still looking for part time or gentle full time work. If you have any leads, please email me. Thanks.

I Love My Wife

OK, I know that's an obvious sentence for most couples, but I don't think it gets said enough. Let me say it again, I LOVE MY WIFE. I realized just how much I loved her during a conversation with my big sister and little brother last night. The conversation turned to my upcoming wedding and my sister mentioned that another family member visited our wedding website, saw that I'm marrying a woman, and changed their mind about attending. Their homophobia isn't new or surprising, but it still shocks me that they can't get over themselves long enough to support me on the happiest day of my life. I realized last night, that despite all of the pain, inability to work, and even the bladder troubles, being with Nilaja has made me happier than I have ever been in my entire life. I don't think I ever thank her enough for everything she does and has done for me. Everyone likes to say how strong I am, but I would probably be balled up in a closet somewhere if she wasn't here taking care of me.

Honestly, I would not have my diagnosis if it wasn't for her. My last ER visit was in December. Nilaja took me to the hospital and sat there with me the whole time. When they diagnosed it as a migraine and sent me home, she was not impressed. Actually, it was the 6 days of suffering that convinced her that I was not suffering from a migraine. I, on the other hand, was not concerned because this wasn't my first atypical migraine or mysterious pain. Despite all of my reasoning and trying to explain my history to Nilaja, she continued to press me to have a follow-up with a neurologist. By February, I conceded and made an appointment, just to make her happy. I am so thankful that never let up and convinced me to pursue things further.

And now that we have it figured out, she continues to be there for me in every way possible. On most days I wake up and my legs are too weak or shaky for me to stand and she holds me up until I am able to walk. In the evening when I'm tired and weak, she makes sure I eat and get to bed. When my eyes get blurry and I can't see my hand in front of my face, she leads me wherever I need to go. Most importantly, when I'm in so much pain that my clothes hurt my skin, she makes me laugh and forget about the pain.

I guess I shouldn't be so surprised, she's always been an amazing woman. I always thought relationships crumble in crisis. Especially a relationship so new as ours. I received my diagnosis 4 days before our first anniversary. I half expected her to start pulling away as she learned what was happening with me, but her response was the exact opposite. We already had our wedding date scheduled for July 19, but she wanted to go ahead with the paperwork and not wait until July. When I started having trouble with the stairs in our apartment, she found us a new place to live and she even purchases a new bed for us when I started having trouble getting in and out of her princess bed. She did not hesitate to step up and take care of me, and even when I'm frustrated and unable to communicate, she remains patient and loving. I couldn't ask for more.

I hope everyone has the opportunity to find someone as wonderful as my wife. Or half as wonderful as my wife, because she is truly one in a million.