I Survived!

Today, at 10 PM EST, I take my very last dose of Ribavirin and finish my treatment for Hepatitis C. They say time flies when you are having fun. I can now state, from experience, that the opposite is also true; time crawls when you are not having the least bit of fun. 

This has been the longest almost year of my life. I have gained weight, lost weight and gained it back again. I have broken out in several rashes and had the worst acne of my life. I have woken up in the middle of the night soaking wet from sweating and freezing. I have been beyond tired; I have felt hung-over despite my total lack of drinking. I have been in pain. My hair has fallen out. I have had several attacks of all encompassing rage, and I have lost most of my motivation to do anything even remotely fun. In short, this year has just been a bucket of fun.

But I survived. It is over. My weight will stabilize, my skin will calm down, the fevers will stop, my energy will return, the aches and pains will lessen, my happy, fun personality will make a comeback, I will care again and my hair will grow back. In short, I will be the person I have always been. A person I recognize.

The diagnosis of this disease was a tough thing to swallow. I spent about three months crying; feeling tainted and convinced that I was going to die. I have my husband to thank for getting me through it, and for not letting me feel too bad for myself. He has a way of making me laugh even when I don't want to, which is annoying when I am mad at him, but pretty awesome when I am a crying mess. 

People have told me this entire time how strong I have been; but the truth is, I never would have made it through this without the family and friends who took me to doctor's appointments, gave me my shots, cleaned my house, hugged me, took care of me, made me laugh, loved me long-distance, supported and encouraged me.

The key to surviving treatment for Hepatitis C is not in the vitamins you take, or how much water you drink, or even how much rest you get. The key is to surround yourself with good people who will be there for you through every hard day and then celebrate with you when it ends.

Also, you'll need Super Grover. Everything is easier with a cuddly blue monster on your side.

Perks of Triple Therapy

As of Friday, August 02, I have 8 more weeks of treatment to go. My Dad calls it a drop in the bucket, and I suppose he is right compared to what I have already been through. However, if he were in my shoes, I am sure the prospect of 8 more injections of what is essentially poison, wouldn’t exactly thrill him. I am still testing negative, and at this point, my chances of being cured are very good.

Now that I am in the home stretch, I have had time to reflect on my treatment as a whole. I have realized that despite all the terrible side effects, treatment wasn’t all bad. In fact, there have actually been a few perks. Since most bloggers who talk about the side effects of triple therapy tend to focus on the negative (and as a result, scare the crap out of those who are starting treatment), I thought I would take the opposite approach and talk about the perks to being on triple therapy.

For the first 12 weeks, you have to eat the kind of foods most adults avoid; and you don’t have to feel guilty about it because you are actually helping your body by eating them. These foods include, but are not limited to: Bagels with an obscene amount of cream cheese, ice cream, chocolate, French fries, deluxe burgers, cheesecake, chocolate, and my personal favorite, cheese.

For the next part of treatment you get to experience weight loss, without trying. Once your 12 week gorge fest is over with, you will have gained a fair amount of weight. But fear not my friends, for that weight, and then some, is going to fall right off. It is going to disappear even if you attend a graduation party and gorge yourself on brownies. Because of this, you are going to need new pants; which, conveniently, is part of the next perk. (Men might not see this as much of a perk, sorry fellas.)

Losing weight and needing new pants means one thing: SHOPPING! Just like the first perk, gorging yourself on yummy food, you cannot feel guilty about this one either. After all, one can’t exactly go around with their pants falling down, unless they are a fifteen year old boy, and even that is not advisable.

Your hair will fall out. I know, at first this seems like a negative, but one day you will notice that it is not just the hair on your head falling out; your body hair is going too. Goodbye shaving, hello smooth skin.

Lastly, you have a built in excuse to take a nap, whenever the mood strikes. If someone has the nerve to question you, give them a full on guilt trip. Sleep is important when fighting a virus, ask Grandma.

So here I am, model thin, my legs smooth as a newborn’s bottom, having made it through almost every terrible side effect that this treatment can throw at me. I hope to be one of the last to receive triple therapy as there are new, less difficult, treatments on the horizon. But if you, or someone you know, are embarking on this journey, know that the end will come and nothing is ever as bad as you imagined it to be.

10 Exasperating Disability Problems

1. Someone tells you a location is “accessible.” But then adds, “There is just one small step to get in.”
2. Finding out that you can indeed get in the “accessible” bathroom; you just can’t close the door.
3. There is only one seat next to the wheelchair space at the movie theater; because obviously people who use wheelchairs have aides, not friends and family.
4. You wait ten minutes to order a coffee/drink, because the barista/bartender can’t see you over the counter. They apparently can’t hear you either.
5. You get referred to as “she/he” even though you are sitting right there. (I.e.: Is she ordering anything?)
6. “Can you have sex?” and “How do you go to the bathroom?” are deemed appropriate conversation starters.
7. You go shopping, but you can’t try on anything because either a. someone thinks the accessible changing room is for anyone who has a lot to try on and “needs” the extra space, or b. the store employees use the accessible changing room as storage for all the clothes they have not put back on the shelves yet.
8. Other people actually trip over you, because they have their face in their cell phone. Watching where you are going is so 1997.
9. Finding cute dress shoes is more difficult than finding whiskey on a Sunday in a dry county.
10. Despite the fact that it is 2013, and segregation is illegal, you still get told that the accessible entrance is around the back.

New Year, New Opportunities

My 30^th year was one full of challenges; challenges that, at times, I felt that I would never be able to overcome. It felt like I was walking uphill through sand and no matter how much I struggled, I could not get my feet underneath me. I would get a few feet, and then the sand would shift and I would tumble head over foot back to the bottom. I wanted to give up a hundred times, but I knew that I couldn’t do that. Giving up is not something I know how to do.

Fortunately, storms do not last forever and seasons change. My 31^st year is turning out to be a season of new opportunities. Some of those old challenges are not over; but the slope isn’t as steep and my feet are finally finding purchase. I am starting two new jobs this month; the first as an Administrative Assistant, the second as a blogger for Unlimters, an online marketplace for people with disabilities. I will be writing about the products and services I use in order to live an “unlimited” life. You can check out my posts and the posts from other bloggers here.

However, the most exciting thing I have going right now is I am working on finally getting my driver’s license! While driving has always been a possibility for me, it has also been one of my biggest challenges. I have been working towards getting my license, on and off, for the past 15 years. I have worked with a number of agencies, only to stop over and over again because I couldn’t get enough funding to pay for the number of practice hours I needed.

Then I realized I didn’t need the agency. I’m an adult, my disability does not impair my ability to drive; it only requires a few adaptions. So I bought some portable hand controls and my husband installed them in the car. A friend helped me obtain the rest of the adaptions I needed and on my birthday, I went to the Secretary of State to have my permit renewed.

I have driven four times since getting my permit; three times with my husband and once with my Mother-in-Law. It has not been easy. Today, I drove to the grocery store and home again. I could tell my husband was nervous, and that frazzled me some. I wanted to be perfect for him, I wasn’t. I made the mistakes of any new driver. I had trouble staying in the center of the lane, I took a few turns a little sharp and I had a hard time maintaining my speed. I was so focused on doing it right, making him proud of me, making sure that he believed I could do it, that my brain was going a hundred miles an hour. After I pulled into our driveway and turned off the car, I burst into tears.

I wanted driving to be easy. I wanted to be good at it right away. But driving is hard and I am like any other new driver. Both Tom and my Mother-in-Law said I was better than they expected me to be, and they both are sure that with practice I will get better. Tom says one day it will just click and driving will be natural. I wanted that day to be today, but it wasn’t. I don’t think it will be tomorrow either.

When I set a goal, I tend to sprint toward the finish line, my quilting is a perfect example of this; but I have to accept that accomplishing this goal is going to be a marathon. It is going to take time. But I am determined that this will be the year I finally get my license. It is going to be one of the most triumphant moments of my life; and it will be worth every tear, every mistake and every year I spent getting there.

Cripple Swing Dancing

One of the first things I posted in this blog was about dancing. I have also mentioned that for the most part I do not “feel” disabled. However, dancing is the one thing that always makes me feel different than my peers. Growing up I dreaded dances; I spent most of them against the wall, watching everyone else have fun and feeling sorry for myself. If I tried to join in, I would inevitably fall over or do something else embarrassing. I remember in eighth grade my best friend tried to get her guy friend to dance with me and he refused, right in front of me. I felt like leper.

In college, I discovered that there was a way for me dance, unique to using my wheelchair. My friend Derrick and I were the third and fourth wheels during “Roomie Date Night,” and although we were not romantically involved, Derrick was a great date. We were in an arcade and the song “Black Betty” came on. Everyone started dancing and I prepared myself to just watch as usual, but Derrick had other plans. He grabbed my arms and swung me around with my chair. It was a little clumsy, but it was amazing. I was finally dancing, it didn’t look awkward, people were clapping for us and I felt one hundred percent included. That night Cripple Swing Dancing was born.

After that night, I got really good at Cripple Swing Dancing. Even though Derrick had discovered my skills; it was my best friend Charles who took it to a new level. It became our bar trick, something that people looked forward to seeing. We even performed on stage during my senior year body building exposition.

I don’t see Charles much anymore, but whenever we have the opportunity, we break out the old skills. Recently we danced at our friend Stephanie’s wedding and someone took a video. It is a bit dark but I am sharing it anyway, for all you wallflowers who think you can only sit and watch.

Surviving Unemployment

My season of unemployment will soon be coming to an end. On Tuesday, I was offered a part time position at a company which is known for their job security and internal advancement opportunities. I am not going to share where it is until I know what their policies are, but I am very excited. I am just waiting for them to send me a contract and I should start on July 15^th.

This has definitely been an interesting experience, and if I am being completely honest, I do have mixed feelings about it ending. After all, there are some perks to being unemployed. Namely, the sleeping in, plus the time you have to spend with all those hobbies, interests, people and pets that tend to be at least slightly neglected when you get sucked into the daily grind. On the other hand, being stuck in the house every day, and turning in application after application without seeing any results can get a person down after a while. I am definitely ready to get out in public again and am looking forward to meeting new people and learning new skills.

I know there are many people out there still struggling through unemployment, so I thought I would share some of the things that I learned during my experience.

•   Be prepared, filing for unemployment is a pain in the ass. Everyone told me that it would be easy; I was that one lucky person to have issues with both the phone number and the website. It took me a week to apply. Try to stay calm, don’t freak out and throw your phone against a wall. You may regret it.

• When sending in resumes, take the time to write individual cover letters for each job even if you are not asked for one. Use the items listed in the qualifications section of the job posting to create the body of the letter. This will take a lot more time (which you have plenty of now), but it will increase your chances of getting an interview sooner.

• Even on the rainiest, most depressing day of your experience, get up and get dressed. Getting ready for the day, even if you are not going anywhere, really helps you get motivated to do something; whether it’s searching for a job, doing the laundry or walking the dog. Staying in your jammies encourages you to lounge and nap all day, which can lead to feeling more depressed and hopeless.

• Find a project. Something to keep you busy that isn’t related to trying to finding a job. This will also help you stay motivated and busy during your time off. It is also a fun outlet for when you get job search burnout. You will get job search burnout.

•  Open yourself up to new experiences. Apply for jobs you would love to have, not just the ones you know you can do. Yes, you do need some experience, but in an interview an excited candidate will get more points than the one that is just there because they need the job. Everyone needs a job, get a new shtick.

So that’s my advice for surviving unemployment. I had some big plans when I first started this adventure, not one of them has been seen through to the end. What I have learned most from my experience though, is that you cannot let your job get in the way of your other goals or ambitions. I am determined to keep making headway on all those wonderful plans I had in April.

Unemployment: Making it Work

Unemployment is a weird little monster. Some days are good, you apply for jobs, you clean the house, and you work on projects. Other days are not so good; those are the days when you feel useless. When you don’t want to do anything but sleep and you are sure that you are never going to work again. For me the bad days are even harder. For me, on the bad days, it is not just the stress of the bills that still need to be paid, or the loneliness of the days spent by myself. For me, each day that I am unemployed it feels like a threat to my Independence, a threat to everything I have worked so hard to overcome.

Independence is a capital letter word in my vocabulary; growing up it was the most important thing, and to some degree still is. It was the reason for everything; for the hours of physical and occupational therapy, for the almost countless surgeries, for the IEP’s and the other three letter acronyms in my life (MRS, AFO, SSI, CIL). Independence meant that I had made it, that I had shrugged off every doubt, every low expectation and I had made it. I had survived, I had overcome, and I had beaten my disability.

Now on the bad days, I feel like that independence is slipping away. I know it has only been a month, but I am starting to worry about what I will do if I don’t find another job; if my unemployment runs out and I find myself depending on Tom for everything.  I depend on Tom for a lot already, he is my main source of transportation, but I have always had my own money. I have always paid my own bills and been able to buy the things I needed or wanted without having to ask someone else for it. 

I am also starting to feel trapped. I cannot drive, I live too far to access public transportation and my interaction with others is now limited to the ladies in my weekly quilting class, Taden, the cats and my husband who has been working as much overtime as possible to make up for my lack of income. On the bad days, I feel lonely, friendless and pathetic.

In order to keep the bad days at bay, I am trying to stay busy. I drag myself out of bed even if sleeping all day seems much more appealing. I have my coffee. (I am quickly becoming an addict, something I never managed to do while I was working in the traditional sense.) I spend the morning writing and looking for jobs. I am currently working on a Children’s book as well as a narcissistic, non-fiction novel based on this blog, both of which I intend to e-publish. In the afternoons I focus on my other creative endeavors. I have set up a website where I can sell my photography, and I am working on new quilts along with setting up an etsy site to (hopefully) sell them.

Of course there is still that little voice in my head telling me no one will buy any of my work and that all this time will have been wasted; but I took a crutch to her teeth last week, that voice is mostly garbled now.

I have no idea if any of this will amount to something, but it keeps me in control of my situation, it keeps the fear and isolation at bay. Plus, if this does work out, what better way for me to define Independence than by making a living on my own terms, my own talents?

If you are interested in checking out my photography please click here. If you can’t buy, leave a comment. I would love to hear your feedback.