Not giving up, mourning my old self, and finding a new normal

I'm in mourning. For many years I've denied I was sick and now that there is no question that something is wrong with me, I have to start accepting the new me. The MS me.

Initially, I intended to live my life post-diagnosis, just as I'd lived pre-diagnosis. The major problem with doing that is that the last few months before receiving my diagnosis were not "normal." My last major relapse was the first Wednesday in December 2008. It marked the last time I worked a full week and the last time I would be able to ignore my symptoms. The hardest part about going to the ER that time was not knowing what to tell the doctor and what was normal. Many of the symptoms that I've experienced full-time since December, started many years ago. I remember having this leg pain in high school and again in college after taking a dance class (which lead me to an orthopedic surgeon, 13 months on crutches/cane, and knee surgery). I've had numbness in my hands since high school (tendonitis) and all throughout my time at Colby and now in California (carpal tunnel, arthritis). Even the left eye blindness isn't new, that happened in August 2005.

What is new, is my acceptance and acknowlegment that I'm sick. And that I'm not making this up. (Oh, and the bladder dysfunction, which sent me running back to my neuro's office in February, that's new.) The question then becomes, if my symptoms aren't new, why do I seem so much sicker now. Well, three reasons.

1. For the past 6+ years, I've sought medical help and each time been told that there's nothing wrong with me. Everyone thought I was a hypochondriac and it began to hurt my friendships and relationships. So instead of talking about it, I ignored it. Even when it got really bad that I couldn't hide it, I would resist medical treatment because I couldn't stand having people think I was making things up. Until I got really sick in front of Nilaja and she wouldn't let me ignore it. As much I wanted to accept that I was having another really bad atypical migraine, she didn't believe it and pushed me to follow-up with a neurologist. Since then, I've been more honest about my health than ever before. What I've endured every day for the past few years is shocking and mean seem impossible to anyone who doesn't have a chonic illness, but there are tons of people wiht my story. We endure because we have to, until someone tells us that we have to slow down if we don't want to be crippled. That's where I am.

2. There is no question in my mind that the Avonex was making me sicker. Not just emotionally, but also physically. I don't know the mechanisms that make it an effective treatment, but it did not agree with me. I need to wait for 5 weeks of medicine to get out of my system before before I can really gauge my progress. I would like to find a new one and hope that it doesn't make me sicker. I also have to remember that no matter what medication I take, they do not cure the disease or send you into remission. It's like being in a moving car with no park or reverse gear. All I can do is speed it up or slow it down. The disease modifying agents slow things down. The disease doesn't stop progressing, but if the medication works, I may be able to slow the progression down enough to avoid complete disability.

3. The third reason that I think I'm sicker now may be due to the natural progression of my disease. This seems unlikely if you think of the disease beginning in March 2009. Especially if you believe I was healthy in February. Or even if you think of me being healthy in November, my current levels are pretty shocking. But I think of my disease in a broader scope. I count all of my major episodes- Hospital visits Dec 08, Jan 07, Dec 05, Jul 04, Oct 03; vision loss Aug 05- along with the doctor visits for numbness, tingling, muscle pain and weakness, and there's evidence of the disease from at least 1999-2000. So when I think about the disease in these terms, it's not so surprising that I'm where I am or that some of my symptoms are advanced.

But this doesn't mean that I'm going to sit back and let the disease take over. Not at all! I'm still fighting just as hard as before, but I've decided on a new goal. I can't keep fighting to get back to the normal I had before any symptoms showed up. That normal disappeared over 6 years ago, and it's hard to realize that I will never see that again. What I need to do now is find my new normal. Figure out what my very best is and work to maintain that, because no matter how hard I try I will always fail at reaching the old normal. I don't like failing, it makes me depressed, so I am making new goals for myself and will stop allowing the depression to be a weight on my shoulders.

Now I just need to learn how to fully manage my symptoms...

Decision Made

I just spent the last 20 minutes crying myself to sleep. It didn't work. That was the last straw. I can't take anymore suicidal thoughts. I can't take anymore flu-like symptoms. I can't stand the insomnia and constantly feeling sick to my stomach. There has to be something better than this.

Two months ago I was so happy, but now I don't have the energy to do anything. I'm not myself anymore. I used to put on makeup everyday, even if I didn't plan to leave the house. Now there are days when I don't even shower because I'm too depressed and I think, "Who cares?!" I can't take it anymore.

I did my final dose of Avonex last week. I can't put that stuff in my body anymore. I just can't. I would rather be in a wheel chair than feel the way I do now. There is no reason for me to feel the way I do and it has to stop.

I know I'm rambling, but I just reached my breaking point. I want my old self back. NOW.

4 down, countless to go

Today was a big day!

I just completed my 4th injection. It went smoothly. I think I finally have the process down and can just do it without hesitation. YAY! I've learned that if I ice the injection site before injecting and I let the syringe sit out for at least 45 minutes, I don't even feel it.

I also received my second shipment of syringes and didn't give it a second thought. I'm hoping this means smooth sailing from now on.

Obviously, I made it to work today. Initially, I thought leaving the house was a bad idea, but I'm glad I went. When I woke up, my feet were completely numb and even after 30 minutes of laying in bed there were no changes. By 6 am I knew I had to get up, so I forced myself up. I made it to the end of the bed before falling to the floor, this is a victory. I had to slide on my butt down the stairs again, I can't wait until Sunday when we move. My feet were better in time for my shower and I dragged myself to work.

After just a few minutes there, my eyes started getting blurry and my head was spinning. I wanted to go home. I'm sure the anxiety surrounding having the talk with my employer wasn't helping things at all. I was pleasantly surprised when she arrived and was very supportive. We've been a team for over 2 1/2 years and I've been afraid to disappoint her. So, it pained me to leave my letter of resignation for her and then wake up this morning still feeling like shit and not quite sure how long I could continue. In my letter, I offered to continue working through April doing 8 hours each day (I currently work 2-9.5 hour days and a 6 hour day) and work one 8-hour day each week in May. I was so stressed about making it through that and was not at all expecting her to suggest I work even less hours. I was shocked and grateful. Now I'm going to work 7:30-lunch (about 1:30) on Monday and Wednesday. This seems much more manageable, allows me time to teach her everything I know, and gives me time to rest.

I can't tell you how excited I am to rest. And to rest in a home without stairs or a bed too high for me to get into safely. YES YES YES!! The big move is on Sunday and it isn't coming a moment too soon. I never thought I would be this excited about moving, but the inaccessibility of this place has me too afraid to leave the couch. Oh and my Neuro can see me tomorrow so that we can file the paperwork. It will be so good to get that rolling so there isn't much of a lapse. Last thing I need is more money-worry.

This all just became so real.

Despite knowing I had MS since March 5 and expecting I had MS since February 26, I guess I still hadn't accepted the diagnosis. I say this because I just signed for the first set of injections. They were delivered to my office by UPS, as expected, and when he had me the box it felt like someone had just punched me in the gut. I stood there looking at the box in total shock. I really do have MS and I really do have to give myself weekly injections.

The box itself isn't very big, 8 or 9 inches high and wide, and less than a foot long. It's sealed with "Tamper Evident Tape" and has "Perishable Open Upon Receipt" printed in big red letters on the side. The box is cold to the touch. I opened it and inside is a white foam cooler that takes up the entire box. I pulled the lid off the cooler and inside, sitting on top of two ice packs, is four pre-filled syringes of Avonex. They are in light-shielding packaging, but the contents are clear.

I picked it up to transfer them to the office fridge and immediately, the tears started. I couldn't help it. The whole scenario was so foreign yet I could feel my mind and body registering that behavior. Creating a habit. I slid the package onto the top shelf of the refrigerator and looked at it like a kid watching a popcorn bag inflate in the microwave. I closed the door and returned to the my desk and shame washed over me. Although I've been very open and honest about everything going on, I sudden didn't want anyone to see the injections or know that I needed them. I grabbed a paper bag, tape, and a Sharpie from my desk and proceeded to conceal the medicine. I labeled it "DO NOT TOUCH" and sealed it with packing tape.

And now I'm here, sitting at my desk trying not to think about the secret in the fridge and trying not to cry. But I don't know why. I've been so happy and so ready to tackle this head on and now I'm afraid and ashamed. I'm not a stranger to tough diagnoses or long-term treatment, but there's something about giving myself injections or even needing to do it, that has triggered me. Hopefully, this will go away before I meet with the nurse to learn how to administer the medicine (should happen next week). The nurse doesn't need to see me breakdown.