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.

Revenge

I know I haven't written about the wedding or all the fun I'm having, but I have to tell you that my body has started to revolt. I had complete body cooperation until 9:30 pm on Sunday. Actually, my body was better than it had ever been! I danced non-stop for over an hour without an inkling of pain, numbness, tingling, dizziness, or lightheaded-ness. Once I did start to feel icky, it came on slowly and coincided with the party winding down. It was unbelieveable that I lasted as long as I did. I actually expected to be in the wheelchair after the party and in bed all day Monday, but I woke up with all my vision and no problem with my legs at all.

My symptoms remained relatively nonexistent until last night. I started having a lot of left shoulder/arm pain and weird left foot pain, that didn't respond to any of the OTC pain relievers that I tried. And then I woke up unable to bear weight on my left foot. I don't think it's MS-related, but it could be. I have no idea, but despite today being pretty low-key (we went to the movies) my pain levels are rising. I've actually already done my nighttime "doping" (my medley of pain pills plus a sleeping pill, so this may get really incoherent soon), but am still in agony. I think it's time to call a doctor. Ugh! I really hate calling my PCP and I didn't want to spend this week doing anything medical, but I can't function with one side of my body sore and swollen.

Of course, the pain and the stress over the pain is starting to set off brain stuff. Useless.

And to top it all off, I got the summary of charges from the hospital today. I racked up nearly $68,000 in charges. I don't know what our portion of that will be (they haven't received information back from the insurance yet and we have decent coverage), but the thought of that has me completely freaked out. I'm trying to remain calm and ignore my inner voice which keeps saying, "no more visits to doctors, hospitals, medicine!" I hate that voice, it always pops up when the bills come in. This time I know it's ridiculous and I can't listen to it (even though it will make me more hesitant about future care). But it's there, it's stressing me out, and intensifying my guilt.

Reader Question

This morning I received an email from a reader. I was really torn with how to respond, but with Nilaja's help, I think I'm ready to respond. Here's what they wrote (I hope this is OK, name withheld):

Hi Chris,

Thank you for sharing your experiences with us. I've been reading for a while. I know you are not working and short on money and with the recent hospital stay I'm sure your worried about getting those bills in the mail. I was wondering if you would consider accepting donations from readers. You could put a donation box on the website and if people want to help with bills or send you gifts they can do it in a safe way. What do you think?

Well, my first reaction was thank you, but I can't. I've always had a hard time accepting help in any form and even though my income is small and fixed, I'll figure out a way to manage. But the truth is, I am hardly managing right now. In my entire adult life, I have never had this much worry over bills and with my disease still being so out of control, I'm not sure when things will change. My "I hope to be working by" date continues to be pushed back (it's not August anymore). I'm currently praying that the hospital bills come after the wedding so that the stress won't disrupt my day. (I am also trying to figure out how to pay for all the new prescriptions, equipment, and supplies that the doctors/specialists think I need.)

I am truly and completely humbled and grateful that anyone, even a stranger who knows me only through the words that I post here, would want to offer help. I wish I had more to offer in return, more to give you as a thank you. Just know that I feel blessed at even the thought and any donations will help relieve the burden and stress that paying for my care has caused. Thank you thank you thank you.

To Work or Not to Work

I currently work outside the home. I've had my current job, Office Manager for a Chiropractic Clinic, since late August 2006. To say I love it would be a lie, but I certainly don't hate it. It is part-time (Monday, Wednesday, and half-day Thursday), mentally challenging, and full of surprises, but I'm good at it and I make enough to pay my bills. Though the job is no walk in the park, I have mastered it. Basically, I sit at my desk, I answer the phone, I greet and take care of patients, I manage finances, I do a healthy amount of typing and keeping records, and I smile. That is grossly simplified, and trust me, it's not as easy as it sounds. There are definite days when I come home and want to pull my hair out, but I'm good at my job and can do it with chaotic ease.

Well, I could until the MS hit hard, now I can barely make it to lunch before my brain is done for the day. On a good day, all I have is fatigue and leg pain. But I haven't had a good day since last year. On most days, my head feels like it's being squeezed and my eyes go in and out of focus. My brain vibrates inside my head and my fingers don't hit the right keys unless I watch my right index finger hit each individual key. My memory will disappear and I'll have to look up information that I should know without second thought (like the office phone number). I have a hard time recalling words, forming sentences, and following verbal requests. And that's just what I can think of right now.

Needless to say, working successfully is practically impossible now. Even if I make it through the entire day, there is no guarantee that I completely all the tasks I laid out for myself or that I will be any good the next day. In fact, the symptoms have been so bad that I rarely make it through the whole day and usually head home early and spend the night trying to rest up.

This routine is getting harder on me. I am not bouncing back overnight and have been spending my days off feeling like I'd just worked a full shift. I can't take this for much longer and really just need a few weeks to rest and recuperate. Unfortunately, this isn't possible at my current job. Well, it isn't possible or practical for me to take a few weeks and still be paid, and I have to earn money.

So now what? Well, I'm thinking about going on disability. I didn't think this was in my near future, but I am losing my ability to work and I need to recuperate. If I take this option, I will be able to rest and also have some income to help pay rent and bills. This would kill our plans for getting out of debt, but may mean more possibilities for working in the future. There are programs out there that help people with disabilities find work at home jobs, so that could also be an option for supplementing income. Someone suggested hiring an attorney to help me sort through the mountains of paperwork, but I haven't started researching that yet.

What I do know is that I can't kept going the way I am for much longer. I will never feel better if I kept pushing myself past my limits and trying to work when my brain doesn't want to. We'll see what happens.

The cost of being sick

Let me first say that I feel blessed to have private health insurance that allowed me to go to see any doctor and have most tests done. I know that many Americans don't have that luxury and will have a much harder time receiving any treatment for that reason.

But I have to say, that I can't afford having MS. I have PPO coverage with Anthem (Blue Cross of California). I have a co pay of $35 (which isn't too bad), a deductible of $500, and I'm responsible for 30%-50% of everything else. Yes, it's better than nothing, but it's not affordable. Between MRIs, visits to the hospital, blood tests, and the monthly Avonex injections (not covered by my insurance and will cost $538.64/month) my portion of the cost greatly exceeds my monthly income. When I mention this to others, they always suggest that I apply for financial assistance or charity care, but many of those programs do not apply to someone with insurance or a person with my income or they don't have the money to take on another case.

Yes, I work hard and the small business that I work for compensates me well. But the business is part-time and my earnings reflect that. Plus, the sicker I get, the less time I am able to work, and the less money I bring home. My partner and I have discussed my other options, like taking time off to recuperate and applying for government assistance, but I'm not fully disabled yet and I want to continue to work and pull my weight as long as I can. My earning potential is still higher than what the government can offer and with the condition of our federal and state economy, it would be irresponsible and selfish to stop working now.

So, I'm frustrated. I want and need treatment and care, but I can't work and take care of my responsibilities and also afford to be sick. It just seems so unfair.