Tuesday, March 31, 2009

On being fat and temporarily-abled

I’ve been mulling over something for quite a while and I think I’m finally ready to put it all down. I’ve been worried about writing this because I do not want to offend anyone and if my language is hurtful, please tell me. This is something that I’ve been struggling with and I hope to work through this without alienating anyone. I’ve been having a hard time with being fat and needing a cane.

As a fat woman and a self-proclaimed fat activist, I am extremely conscious of my surroundings and the stereotypes associated with being fat. A very dear virtual-friend coined the term “death-fat” for those of us that the medical field call “morbidly obese.” I love the term death-fat because it sums up all the worries and stress that are wrongly associated with people of size. By looking at an arbitrary correlation of height and weight, doctors are ready to diagnose millions of people with diseases like hypertension and diabetes. Interestingly, there are tons of studies that have proven that weight has nothing to do with hypertension or diabetes, a fact that most of us have at least anecdotal evidence to support. Take me for example, I am about 300 lbs and I don’t have either disease. Moreover, the extreme fat-bias spouted by many doctors is a major reason why my diagnosis took so long. No matter what the symptom- pain, vision loss, fatigue, dizziness, etc- doctors suggested that weight loss would solve all my problems. Yeah, I’m still wondering how much I need to lose in order to see again!

Back to my original point, being death-fat has made me particularly sensitive to how others view me and I’ve taken great pleasure in beating the stereotypes. It is important that I appear healthy, nimble, and strong. So, imagine my difficulty when I started needing a cane.

Now, let me be clear that I try hard to be a full supporter of people with different physical abilities and challenges. I don’t think twice about giving up my seat, making sure a venue is accessible, or (in college) advocating for a more accessible campus. Before my current situation, I would not have considered myself an ablest. But when I think about my feelings surrounding needing a cane, I realize that something within me feels shame for being fat and needing a cane. Yes, I have good reason for using it, but it is hard to accept that others may see the cane and think I use it because I am fat. I have become one of those fat-activist who gets caught up on health or appearing healthy, and I forget that ability is not always in our control and there is nothing wrong with having physical differences, regardless of size or shape. I am not happy about this.

How can I call myself a fat-activist and a supporter of people with disabilities, when I have such strong emotions against being a member of both clubs? I can honestly say that if I had one or the other I probably wouldn’t be writing this, but since I’m not losing 150+ lbs overnight and the MS isn’t going away, I have to deal with what’s going on. I have to ignore what others may think of me and take care of myself. And I am. I love my cane and am grateful that I have it.

But there’s still this internal nagging. I feel so ashamed for all the years that I reveled in being 300+ lbs and not having any restrictions. Every time I subconsciously ranked my self higher than another fat person because I could walk without trouble or I was healthy, I violated everything I believe in. I am sorry for that. It is wrong to judge people for their ability or size. And now I know better. I know that abilities are temporary and I am grateful for each day I get whether I can walk or not.

I can’t tell you how awful it felt when I recognized what was going on within me and I hope that anyone who I have discriminated against directly or indirectly will accept my humble apology. I am truly sorry.

I also want to add, that now that my symptoms are so heightened and I often get dizziness or my vision is blurry, I am grateful for the assistance that the cane provides.

Post nap rambling

Today was indeed a bad day. I learned the taking the bus when I'm exhausted and already feeling off is a baaaad idea. A very bad idea. By the time I reached my destination I was so nauseated. All the bouncing and jostling on the bus was no good for my brain. And made it to work OK, but the longer I sat there trying to work, the sicker I felt. Everything I needed to do required precision and accuracy, so I finally gave up and my wife happily brought me home. And now I'm on the couch again.

I'm starting to appreciate the couch. I spend too much time here to have so much hate for it. I'm learning to sleep here and it's easier to navigate than my wife's princess bed (which I sort of vault into) when the pain is bad. Unfortunately, the couch still isn't my favorite place to sit. It's too low and squishy, which makes standing tricky. Not too bad unless I'm rushing to the bathroom.

Speaking of bathroom, I had a close call last night. I was on the floor in the living room watching tv, when I got that strong urge. I started to do the dance and remembered that I can't wait, especially when I haven't taken a bladder pill. So I jumped up and ran to the bathroom. I just made it. Oh, I get there, do my business, and was startled to see that it was a weird neon yellow-ish green. I almost screamed and then realized it was probably the new vitamins I started. Ha!

I dont' think I talked about the vitamins yet. I take 4 of a multivitamin, 3 of a vitamin D, a tbsp of Fish Oils, and a sublingual B12. Plus, I'm still doing sublingual iron drops every other day. That's all in addition to the little blue bladder pills and my weekly injections. Did I remember to write earlier that my injection site from last week still hurts? It does and I don't know why. I don't know if it's normal or not, but it isn't bruised or rashed. It doesn't really bother me unless I poke it. WHICH I'M TRYING TO STOP DOING, THANK YOU VERY MUCH. Sorry about the caps, I just know everyone is yelling for me to stop poking it. I mean, I keep telling myself to stop poking it, but if I don't poke it then I can't check to see if it's sore or not.

And now I shall eat dinner.

Jumbled thoughts in the AM

I need to go to the office today, but before I do that there are a few things that I want to say. I'm sorry about the bullet point list, but I should really be taking a shower, I'm scatter-brained this morning, and I'm racing my laptop battery.
  • I know that people are reading, thank you. Feel free to comment, I will respond.
  • I know there were concerns about our survival if I go on disability. STOP WORRYING. MS has not made me irresponsible and selfish. Nope, it has actually made me more aware of how my actions affects those around me and my wife's opinion/emotions/worries are honored. Plus, I like working and being successful.
  • I continue to have intermittent bouts of blurry vision. The scariest so far was yesterday after lunch. It was the first time it happened outside the house or at work. I had just finished lunch with my wife and was heading back to work when everything went blurry. I didn't want to scare her, so I nonchalantly headed back to work alone. But I was scared. I didn't even have my cane. Luckily, I know that route and there were lots of people out crossing the street so I didn't have to worry about cars. That time it was out for at least 30 minutes.
  • Dr. Friedberg's office called yesterday to tell me that I have Vitamin D Deficiency. I was not surprised. It is pretty common among those with MS and from my research, a lot of people believe that Vitamin D Deficiency makes you more susceptible to MS. It does not cause MS and taking in more D doesn't cure MS, but it may help manage symptoms. We'll see.
  • Today is not a good day. I worked a full day yesterday, we were up late, and I fell this morning (lost my balance coming down those dang stairs, I was using my cane). I am exhausted, headachey, sore, and spaghetti-legged. Taking the bus to work should be lots of fun.
OK, I think there was more that I wanted to write, but I'm so scatterbrained that this took me almost an hour and now I need to get moving so I can get to work. More later.

Saturday, March 28, 2009

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.

Update: Depression, Suicide, Happiness

It’s been a long time since I’ve updated, and I’m sorry to leave everyone hanging. The past two weeks have been pretty hard for me, and every time I remembered to update I found myself too tired/dizzy/light-headed/achey to sit down and write. And even though I am currently exhausted and in pain, I think 2 weeks is too long to go without an update.

So, let’s see. In the last two weeks, I have been suicidal and depressed, started my Avonex injections, attended my first MS social group, felt incredibly happy, and started contemplating going on disability. Yes, it’s been two LONG weeks.

It’s hard to say when the MS-related depression started, because I have been somewhat depressed my whole life. I know that once the extreme leg pain started, pretending to be happy became harder and harder. Nothing is more depressing than be in so much pain that you can’t see straight and there’s nothing you can do about it. It was so bad that I would take melatonin each night and cry myself to sleep. In addition, the pain and stiffness in my legs got so intense that I couldn’t care for myself. I have always been very self-sufficient and suddenly I was a 24-year old woman who couldn’t even shower without assistance. On the days when I was home alone, I would sit on the couch weeping until my partner came home.

This is when the suicidal thoughts came in. Not just because of the pain, but because I felt that I was not living the life I’ve always wanted to live. I’ve never wanted to be stagnant or needy and all of a sudden, that’s what I was. All I could think was, “What kind of life is this?” I’ve fought so hard to get a good education, find a good job (that I’m really good at), find my soul mate, and find happiness, and now it’s all changed. Because of MS, I can’t enjoy my life. And I sat on my corner of the couch, drenching the arm with my tears, when Oprah came on. It was the episode with Montel Williams. No lie! I dried my eyes and started watching his tearful confessions. He is very open about his struggle with MS, depression, and suicidal thoughts. I looked at him describing the exact situations that I experienced and thought, “If he can do it, I can.”

It was as if an old light bulb in the back of my head started to flicker on and I remembered all of the things I had to live for and the promise I made to myself. When I started college, I told myself that I would never try to take my own life again. And I mean it just as much as I did 7 years ago. That’s why I started this journal in the first place. I know it may seem cliché and silly to have a “best life” blog, but I need this space to sort out the bad and remind myself of the good. While the crying hasn’t stopped and the depression still comes and goes, I am generally happier. And I count that as a victory.

Moving on… I have started the Avonex. My first independent injection was Thursday, March 26. I hesitated a bit, but I did it. Phew! The injection site is a little sensitive, but I didn’t have any major flu-like symptoms like I did the first time. I am counting this as a victory and I look forward to doing this every Thursday from now on.

Last Saturday, I attended the East Bay Lesbians with MS group. (There are groups for everything!) It was actually a lot of fun. I’m not usually a social person, but I had a good time talking with the ladies and learning about their ways for coping and managing symptoms. I was the youngest there by 20 years (I’m used to it), but they were hilarious women who all have a huge grasp on life.

I’ve had a lot of moments of happiness in the last two weeks. Yep, intermingled with the suicidal thoughts has been happiness. Other than meeting other EBLs with MS, I also bought a new cane, got “married,” and found a new place to live (with a pool). Yay!! I will post pictures of my new cane when I get a chance and take some decent photos. I purchased it from fashionablecanes.com and I love it! I plan to order another one for our Big Ole Fancy Wedding in July.

I’m sorry I didn’t say anything when it happened, but my partner and I filed the Domestic Partnership Paperwork and were legally joined on March 17, 2009. YAY! I took her last name and have been busy doing all the official name change stuff. It’s super exciting for both of us. We’re still having our big celebration in July and will count that date as our wedding date.

My finally happy moment is finding a new place to live that doesn’t have stairs or neighbors who smoke. The place we chose also has 2 pools which will be great for exercise. They also have a gym and I can’t wait to use a stationary bike to keep my knees strong. Our apartment is on the first floor and even has a patio. This should be really great.

This has gotten really long, so I’m going to end it now and write a separate entry about working and going on disability. This is a very new development and I may need to ramble a bit on the subject.

Saturday, March 14, 2009

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.

My legs, vision, insomnia

I'm sorry I didn't finish writing on Thursday or post anything on Friday, but I've been in the bed since then. It's my legs. The pain started on March 6 and continues to intensify. Even when I'm resting, the pain is nearly unbearable. Plus, there's numbness in my toes, pins and needles running up and down my legs, burning joints, stiffness, and they feel heavy. Since yesterday I've been using my salvaged college cane (without the rainbow ribbon), and I finally ordered a more stylish one since I will need to leave the house soon. Our need to get out of this place has moved from "would be nice" to "has too happen ASAP," so I wrote a letter to our landlady and hopefully she'll have a little compassion and release us from our rental agreement without penalty. If we had the money we would just buy our way out, but we don't. We don't even have the money to pay for the treatment... ::sigh::

And I should also mention my newest symptom. Last night, my eyes continuously went in and out of focus. This isn't really new, as it was one of the reasons I made the urgent appointment with Dr. Friedberg, but it's happening more frequently and I'm having longer periods of blurry vision. It started last night around 8 pm, we were watching tv on the couch and suddenly everything was blurry. I closed my eyes to try to reset my vision, but it would quickly go out of focus again. I wouldn't agree to go to the hospital last night, but I will make an appointment with my doctors and figure out if I need to be concerned.

To top it all off, I can't sleep. I'm always so exhausted, but the best I can do is sit still. During the day I try to get some physical rest, but I can't lay here all night. I've been taking melatonin each night to get some sleep, but I hate taking any sleep stuff so many nights in a row. Mostly I think it's the pain not allowing me to fully relax, but since nothing is helping the pain and it doesn't seem to be reducing on it's own, I guess my only option is the melatonin.

Thursday, March 12, 2009

Today was probably worse than yesterday

I have quite a bit to say today, but I think I'm going to split it up into a few different posts so that things aren't too jumbled. Today sucked from morning to whatever time it is now. When our alarm went off and I opened my eyes, my first thought was "Oh my God the pain." My entire body hurt and it felt like my major joints were on fire. I wanted to scream and couldn't move. We laid there for another half hour before I forced myself up and into the shower. If I didn't have so much going on at work, I would have stayed in bed, but I forced myself there and tried not to scare my partner.

Of course, this meant keeping up with my new routine of driving to work. Bad idea because I nearly killed us. Yep, I was completely present and driving, then I get to an intersection and for a moment forgot where I was and what I was doing. Not only did I pull up too far, but I slowly started letting my foot up off the brake. Thankfully, my partner yelled my name in time to snap me back into reality. Yikes.

Once I got to work, the pain changed. Not only did I have the throbbing in my legs and the burning joints, I also had pins and needles running up and down my legs. Well, have. Constantly. And it's making me more depressed than I've been in a very long time. It's just hard to be happy-go-lucky when you want to rip your own legs off. Oh, and I walked a bit today and the brain rattling thing started up.

My only hope is that the medicine (whenever it gets started) will ease these symptoms so I can keep working. If this keeps going I may need to take time off, though I am in no way ready to do that.

Wednesday, March 11, 2009

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.

Today is Not a Good Day

I'd planned to ease my way into symptom talk and not just spring it on people. I hoped that I could tell you about the good things and the "Aha" moments, before dumping all the depressing things in your lap. But today is not a good day and I can't pass up this opportunity to document how hard this disease can be.

It started last night around 9:30 pm. I was sitting on the couch watching American Idol when I felt a sharp pain in my left hand. It was so shocking that I audibly gasped and immediately felt a dull ache in my right jaw. I didn't have any other pain or fatigue just my hand and jaw, but I still panicked. I couldn't help it. Whenever these sudden pains start, they are just a warning of more to come. And there's nothing I can do about it. I starting to think this is why depression is such a major symptom of MS. You have a good day and then suddenly you are attacked by pain and fatigue, and if you're lucky it will only last a few hours or be cured by resting and cooling off. But I've already learned that once the pain hits it may not go away for days.

Which is where I am now, my left hand hurts so much I want to cut it off and my jaw pain is radiating into my head and making me nauseated. I'm tired and have chills. The usual neurological weirdness (leg pain, dizziness, brain rattling, vibration, numbness, and tingling) is on high. I should have stayed in bed today. But I didn't. I'm at work sitting at my desk. Accepting the pain and fatigue and making myself rest is my biggest hurdle. I keep telling myself that I need to go to work or I need to clean the house and I'll sleep on the weekend. However, once the weekend arrives, there's something else that I need to do or see or fix or watch. I never rest. It makes me feel lazy, though I expect that's common among people who spent their childhood trying to prove their worth. (That's a huge topic that I'll leave for the future.) So, I just push through it and I pay big time.

Thinking back on what I now know were flare-ups, they always occurred after times when I pushed myself. I would work so hard and wake up the next morning and not be able to dress myself. This is the lesson I need to learn. I can honestly and clearly acknowledge that I don't want to be paralyzed or permanently disabled in anyway, which means I need to stop suppressing my need for rest. I need to commit to it and allow myself to heal. I will do it. That is my promise to myself.

Oh wow, I just had an AHA moment. I was thinking about all my problems over the years and started thinking about my sudden and mysterious left eye vision loss. And I remembered the circumstances surrounding that event. It was a sudden loss, but I was also deeply involved in a major, life-changing project and at the same time, I needed to change my residence. I'd just move all of my things into my new place when it happened.

I need to rest.

Tuesday, March 10, 2009

Diagnosis: The real day one

I was diagnosed only 5 days ago. Thursday, March 5, 2009-3:02 pm. I had my MRI the previous morning, and was anxious to find out what was really going on.

I promised my partner that I would wait until Friday to call my doctor, but I couldn't wait. When I called his office a few hours after having the MRI and they said my results would be ready the next day, Thursday, I knew I had to call. So after meeting her for lunch and settling into the car to wait for her to finish working, I had to make that call. I tried to listen to music or read a book, but I couldn't focus on anything but hearing my doctor tell me I had Multiple Sclerosis. So, after sitting there for 20 minutes, I called Dr. Friedberg's office. Emily answered and as soon as I gave her my name, her voice dropped. She put me on hold while she got my file, and I closed my eyes and fought back the tears. I'd pictured this moment in my head and I'd done all the research possible, so there was no reason to be nervous or scared. When Dr. Friedberg answered, I cheerfully greeted him and waited for the news. He was obviously nervous about giving that type of information over the phone, and opted to read the radiologist report to me. By the tenth five-syllable word, I interrupted and asked what he was trying to tell me. "Multiple Sclerosis," he said. And all I could do was exhale.

After a few moments of silence, he asked if I was alright and I told him that I was fine and was expecting the diagnosis. Between my weird symptoms and my google-taught reading of the MRI, I knew my answer. Though I would not say those two words until he said it first. We set up a follow-up appointment for the next day, I thanked him, and we ended our call. Feelings of relief and remorse washed over me. For the first time I had an answer. I'd suffered countless mystery illnesses all diagnosed as stress, anxiety, fatigue, or my favorite, "obesity-related." Yep, when I lost vision in my left eye, all I had to do was lose weight and take a nap and my vision would return. I'm still waiting for that to happen.

At the same time, all my dreams of the future started fading away. Would I even have the strength to be a career woman, mother, and domestic diva? Is it fair to my fiance to spring this on her less than 150 days before our wedding? This scared me. So, I called her and she came out to the car to sit with me for a bit. She was not afraid or stunned or apprehensive. She told me to get my crying out and then we need to make plans to live our best life possible. Wow. There was no time to hide under the covers or recoil from my daily life. I need to take this diagnosis as a jumpstart to life.

That's how I ended up here. For years I've wanted to start a blog about my life, but never felt there was anything to write about. Now there is. This blog will not just be about MS, it will be about my life. The good, the bad, and the hot mess ugly. It will be a way for me to talk about how this diagnosis is a wake up call for me to stop putting life off for tomorrow, because tomorrow I may not be able to walk, make homemade pie crust, crochet, or type out all the things I have floating in my head. I feel more alive today than I have in the entire 24+ years I've been alive. I hope you enjoy my journey.