Bucket List (A Work Always In Progress)

1. Be fluent in French
2. Go to Europe, especially England, France, Greece, Ireland, Italy..
3. See my daughter graduate from college and be happy
4. Own a pair of REAL diamond stud earrings, upon which I will finally get my ears repierced
5. Become a person who is obsessed with exercising daily/be healthier/be skinnier
6. Find a cure for neuropathy
7. Be well enough to go out in the real world and earn a decent living
8. Get published
9. Live in New York City, or close to there
10. Fall in love, get married

(some of these may be fantasies rather than things I will really do)

The Perfect Male

He might look something like this

With a social conscious like this

A sense of humor like this

A sex drive like this

A voice like this

The Total Package like this

Or this...

Broken Heart Disease

Maybe it would be just be easier if he were dead, because then I might stop entertaining the idea that I could see him again. Maybe the dreams would stop. Maybe I wouldn't fantasize that he is thinking about me, even though he just married someone else.

In the dreams, we are never a couple. The dreams are always about my trying to get to him, to find him. And once I get close enough, he walks away. He's always close, but never close enough to be mine. She was actually in the last dream I had. They were together on a bus and I called out his name. Either he couldn't hear me, or he just pretended he couldn't, because he descended the stairs of the bus without even turning his head to acknowledge me. I think about our sex in my waking hours, but in dreamland, it's always about the rejection. I think about our kisses, and how I am sure God made our mouths so they would fit together like two puzzle pieces, and no one else's mouth would fit his but mine.

I know so much of this is from my idle mind. It's so much easier to think about him than to fall in love again.  He is a tough act to follow and it's just too much effort to look.

I Never Wanna Leave This Bed

I want to be normal! I want to go out to eat and to the movies and date and all that kind of stuff. Everything is such a fucking chore.

I am at a point where my pain is somewhat manageable, but I cannot seem to get out of the routine of being a sick person. My medicine makes me so sleepy, yet I still suffer from insomnia. It takes me hours to fall asleep, even if I am dead tired. I end up sleeping the day away and then I just waste time being useless. If I drink caffeine, I am a bit more productive, but caffeine triggers my anxiety and I can't tolerate a large amount. I have thought about trying 5 Hour Energy, but it will probably make me feel like I am having a heart attack. Five hours of productivity would be absolutely amazing, though.

My Mom stays so positive. She speaks in terms of "when they find a cure" and "when you're able to get off all of your medicine."  Some days are worse than others but I have difficulty seeing a future without pain. Then again, I heard a baby was cured of AIDS recently, so maybe there's hope for a cure for neuropathy. I suppose it's a good thing I at least want to get out and do some things now, whereas not so long ago I never wanted to leave the house. I need to turn thinking about it into actually doing something about it.

We are planning to move to a townhouse or an apartment in the near future. We really need to get our monthly nut down. We pay high rent, plus I have to pay someone to take care of the yard. Now that it's warming up, it's yard maintenance time again and I really want to be somewhere where that is taken care of.  It costs so much to move, paricularly since it's three women who need to hire muscle. We have a TON of stuff to get rid of before we can move to a smaller home. Maybe I should organize a yard sale. That would be a normal, productive thing to do, right?

I think it would do me good to get away for a week or two, to see something other than the inside of my house. Different scenery, different air, different bed. Especially the bed.

Pain Part 2: Ode To Methadone

Yes, I would have to say I really dug Methadone. I stayed on it for about ten years and led a relatively normal life, or at least I thought so at the time. I barely had any pain and I was able to work. I began seeing a pain specialist, and he also gave me Vicodin for breakthrough pain and Klonopin for anxiety and sleep. He gave me the highest milligrams before building my tolerance. I felt I was doing fine and rarely had to take the breakthrough pain.

A few years in, people started telling me I was slurring my speech. After talking to my brother on the phone, he would later tell my mother I sounded drunk and wasn't making any sense. I had noticed I wasn't as articulate as usual, and I would flub my words sometimes, but I didn't worry about it because I was feeling OK and would never consider not being on Methadone and going back to being in pain all the time. Nothing was worth that.

And then I fell in love. I met a grad student at UNCG who was 11 years younger than I. When we first met, he liked me, too, but I took care of that pretty fast. All he had to do was walk in the room and I would get chills all over my body, and we couldn't keep our hands off each other. I don't think I had ever had chemistry with someone as much as I did with him, at least not that I could remember. He was beautiful and tall and intelligent and even his text messages read like poetry without a single grammar mistake. I started to hound him about not seeing him enough. I called, emailed and texted him constantly. I did everything guys HATE, basically. He was never cruel to me but did tell me he couldn't give me what I wanted. I simply would not accept it and became totally obsessed with him.  I did the usual stalking stuff, driving by his house, begging him to see me. He wouldn't respond and it made me crazy so I resorted to outrageous things, just to get his attention, whether that attention was good or bad. Still, he was never cruel, just occasionally said "you need to stop this and move on" or just ignored me. I would apologize to him for my actions, then a few days later, do something even more outrageous than before. I couldn't figure out why I was acting this way. I started crying in the shower, and then crying all the time. I had been broken up with in the past by guys, and I was sad for a while then got passed it. Why was I doing this? I can't remember the exact sequence of events, but I told him I knew I wasn't acting normally and I was so sorry for everything I had done. We saw each other on and off for three years or so (until 2009) and even saw each other after all my craziness.  He eventually moved and I heard he got married a few months ago. Had I not acted so psycho, we could have probably remained friends, but now we have no contact.

During the Methadone years, my mother (with whom my daughter and I share a home) and I would get into knock down, drag out fights. At the time, I thought I was in the right and everything was her fault. I would scream and she would scream back, all while my daughter stood witness. It was horrible. I continued taking my medicine because it made me feel better, or so I thought, and had no idea my erratic behavior was being caused by Methadone.

I had moved back to North Carolina about 4 years after I started Methadone, but continued to see my same doctor in Virginia, as he was just over the state line and only a 45 minute drive. It is very difficult to get accepted into a pain clinic so I figured I should stay where I was. My doctor agreed I should stay with him.  After doing this for several years, driving and paying $100 per office visit because he did not take my insurance, I decided I should find a doctor in my town. This was early 2011. My doctor made a referral to another pain clinic, but I could not get an appointment for another six weeks. During that six week waiting period, I ran out of my medicines. I called my old doc and told him I was out and couldn't see the new doc for a few more weeks, and could he write me a prescription to tide me over?  I was told that I was no longer a patient there and that I wouldn't be able to get a prescription. Um, what? Well whose patient was I?

The events that followed were horrific. I cannot think of the words to describe what this did to me and what it did to my family. I had been cut off COLD TURKEY from Methadone, Vicodin, and Klonopin all at once.  I thought I was going to die. My body was spasming, my legs were jumping off the bed, I couldn't sleep or eat and I was experiencing bone crushing pain. My Mother ended up losing her job because she had to stay with me and she went over her FMLA days at work. I went to the hospital, called my primary doctor, had to call an ambulance  - NO ONE WOULD HELP ME. Even recalling this is making me upset. I will never forget it as long as I live. Finally, after two weeks or so going through this (I can't remember exactly how it lasted, but it felt like an eternity), it was time for my appointment with my new pain specialist. My Mom had to guide me to the car as I was too weak to walk. My head was down the whole way there and I was unable to speak. When we arrived, she had to get a wheelchair to get me up to the 3rd floor office via elevator. The first thing the doctor said was, "I don't prescribe Methadone so if that is what you are looking for, you may need to go somewhere else." We were told that Methadone can cause heart trouble, changes in behavior, and it would soon be taken off the market. A lot happened after that, like my deciding I never wanted to be on narcotics again, so the new doc tried Lyrica, Neurontin, and a bunch of other stuff that I had been on previously that did nothing for me. I couldn't take the pain anymore and after trying several different opiates, I settled on the one that worked the best and didn't have an effect on my personality.

I have not been the same since that incident. Nothing takes away pain like Methadone, but I will never go on it again. My sister-in-law, and others, have remarked how much more lucid I am, and that the old me is back. I don't fight with my mom anymore (not much, anyway) and I'm a nicer, calmer person. I still have pain, but I would rather have pain than be a raging lunatic. My current medicine makes me tired, and I have a lot of work to do on my legs to make them stronger because I have stayed in bed so much. I wish I would have been "the old me" when I met my grad school lover, but I suppose everything happens for a reason. I don't know what that reason is yet, but hopefully it will be revealed to me. For now, I need to try to rejoin the human race, for mine and my daughter's sake. It ain't easy.

Mandy Sellars

I have been getting major panic attacks when I know I have to be somewhere the next day. Pretty much the only places I go these days is to doctors' appointments, but knowing I can't sleep as late as I need to ('need' not  'want') makes me nuts.  Once I get to sleep, I'm good, but falling asleep can take hours, or not happen at all. My meds keep me sleepy, and I think I would sleep 24 hours per day without the aid of caffeine and someone waking me up. When you feel like crap all of the time, you start to become the master of avoidance and escape. More and more, I just want to stay in my room, watching movies. Even though the pain is a little worse when I am being still, movies take me to a place I would much rather be. I am the Queen of Cancelation regarding doctors - the dentist, my general doc, etc. but I make sure I get to the one who gives me my pain medicine. Sometimes I recollect who I used to be and I cannot even imagine getting up every day and being somewhere at the same time each day and staying a required number of hours (work, school..) I think about when I actually used to get things done, from going out and washing my car to socializing. Those things were never a big deal but now they are major outings that I choose to skip. I try to make myself believe there will be a cure and I can work again and get married and be normal. I wish for being normal a lot. I watched a documentary recently about a woman in the U.K. who has "giant legs." She is this tiny woman whose legs are absolutely huge and won't stop growing. But she drives a hand controlled car, lives alone, and insists on doing everything herself. She really inspires me. I wrote her and told her so.

Pain, Part 1

It's really scary when something starts happening to your body, something strange and painful, and you don't know what's going on. We all try to diagnose ourselves and Google our symptoms and hope whatever is happening will just "go away." About 13 years ago, I began to experience something that never went away.

After my husband and I split up, I went back to college to finish my BA in English. I had a toddler and it was  rough, but I had put aside my education years prior and was really determined to finish. When I was 30, a year away from graduating, I started to get painful sensations in my feet. The pain came and went, and I put up with it, thinking it was from not wearing good shoes while walking around campus so much. The pain was especially bad at night and it kept me awake. I would put several pairs of socks on, massage them, etc. but got no relief. I can't remember how long I put up with this before I finally went to a podiatrist. The first thing the doctor asked me was, "do you have Diabetes?" I said no, and that I had regular check-ups every year and had been checked for Diabetes multiple times. I don't think he even looked at my feet, but instead just did a test for Diabetes. The next day the office called me and told me I had Diabetes. Yes, I was told I had Diabetes over the phone! I was told to control it with diet and when my sugar was under control, my feet would get better, and I did not need to go on medication.  I was confused because I had my sugar checked that year and I was fine. When I was pregnant, I was told by one doctor I had Gestational Diabetes (Diabetes that goes away after pregnancy) but another doctor told me I didn't have it, so I always made sure to keep a check on it after Lindsay was born. I went to an Internist and found out the link between Diabetes and foot pain. The condition is called Neuropathy and occurs when too much sugar is in the blood stream and damages the peripheral nerves. Years later I would discover that Diabetes was not the cause of my Neuropathy.

So, the game plan was to control my Diabetes.  I did this, but my pain kept getting worse. It felt like a hoard of Lilliputians were stabbing my feet with tiny daggers, twisting and turning, relentlessly pursuing the worst possible pain imaginable. I was so miserable. At night, when the pain was at its worst, I would go into my Mom's room, lay next to her in the fetal position, and cry. I would pound my feet on the bed, trying to make the pain stop. Nothing worked. I was referred to a Neurologist, who did a Nerve Conduction Test. All this basically did was confirm that I had Neuropathy, and it was a nightmare. The procedure involves inserting needles into my nerves and sending pulse waves through them to see how my nerves reacted. This was VERY painful. My diagnosis was confirmed and I also learned I had Carpal Tunnel Syndrome, another type of Neuropathy unrelated to the Peripheral Neuropathy. I was put on a drug called Neurontin, which did nothing. I was put on Lyrica. Nothing. They also tried several anti-depressants which are supposed to help, but did not.

Things are a bit fuzzy when I try to remember how long that went on. After I graduated, I began writing for a newspaper and my child was in Elementary School by that time. This was around 2001. The pain had started to move up my legs, and I would sit at my desk at work, not knowing how I would get through the day. One of the reporters  at the paper also had Neuropathy, and we would talk about it, but his wasn't as bad as mine even though he was a raging Diabetic on insulin.

I had moved to another state by this time and began seeing a new Neurologist. After she had tried all of the aforementioned non-narcotic remedies without success, she suggested I try Methadone. At that time, all I knew about Methadone was from the Sid Vicious bio I had read, and that it was used to treat heroin addicts. I was a little scared, but I was also desperate to try anything at this point.

To Be Continued....