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....

How To Deal

I have a talent for noticing things and offering silly commentary. I seem to do that a lot here, but I really would like to start writing about how it really feels to have chronic pain. I know I have mentioned it in passing, but I have never really written about the day to day struggle, at least not here.  I would like to talk to others who live with pain and learn how they deal with it. I will be 43 in a week, but I am pretty sure I already know what it feels like to be 80. The thing about always being in pain is that it's hard to focus on anything else. Pain one ups everything. Going to the grocery store and keeping your house clean are no longer priorities. I have now progressed to the stage where I don't want to get out of bed, and have trouble telling the difference between pain and depression. I don't eat because I'm hungry and I don't sleep because I'm tired; there is no rhyme or reason or schedule going on in my life. I'll get more specific starting with the next entry. Meanwhile, here is some information about my disease from Johns Hopkins.

Idiopathic Polyneuropathy

Idiopathic sensory-motor polyneuropathy is an illness where sensory and motor nerves of the peripheral nervous system are affected and no obvious underlying etiology is found. In many respects, the symptoms are very similar to diabetic polyneuropathy.

Symptoms

In idiopathic sensory-motor polyneuropathy, the patients may experience unusual sensations (paresthesias), numbness and pain in their hands and feet. In addition, there may be weakness of the muscles in the feet and hands. As the disease progresses, patients may experience balance problems and have difficulty walking on uneven surfaces or in the dark. In a small minority of the patients, the autonomic nervous system may also be involved and the patients may experience persistent nausea, vomiting, diarrhea, constipation, incontinence, sweating abnormalities or sexual dysfunction.

Diagnosis

Diagnosis of idiopathic sensory-motor polyneuropathy is based on history, clinical examination and supporting laboratory investigations. These include electromyography with nerve conduction studies, skin biopsies to evaluate cutaneous nerve innervation, and nerve and muscle biopsies for histopathological evaluation.

Treatment

Treatment of idiopathic sensory-motor polyneuropathy depends on controlling neuropathic pain, which can be treated with anti-seizure medications, antidepressants, or analgesics including opiate drugs. In severe painful conditions, patients may be referred to the Blaustein Chronic Pain Clinic for a multidisciplinary approach to pain management. Patients with balance problems often benefit from ‘gait’ training through physical therapy. Patients who have foot drop due to weakness in their ankles may benefit from orthotics.

Word Vomit

For as long as I can remember, I have had dreams that my teeth are falling out. It happens under different circumstances, but I am always left freaking out that someone will notice and I need to get to the dentist as soon as possible. I had this dream analyzed once, and was told it means I say things I shouldn't say, that words fly out of my mouth that I regret speaking. I bought into this explanation because I am the first to admit that I have a big mouth. Rarely do I think something and keep it to myself, unless it's super personal.

I am trying to figure out the difference between forming an opinion about a person and outright judging them. If I witness something I find distasteful, of course I am going come to a conclusion in my head as to whether I feel it is right or wrong. I am a very outspoken and opinionated individual and it's just ingrained in me to want to discuss ideas and think about life.

I suppose the thing I have the most difficulty "holding in" is my need to correct people's grammar. I do it to everyone, even people I don't know. I do it in social networking and in real life. It just comes out of my mouth and I have no control over it. My teenage daughter speaks well and has a wide vocabulary and pretty much my entire family is formally educated, so I didn't grow up hearing words being mispronounced or did I read poor spelling. Even before I decided to major in English and Education in college, I loved English class and learning the rules of grammar. Anyway, my love for the King's English has become somewhat of a curse. Facebook is my biggest nemesis. I am 'friends' with a couple of teenagers who are the kids of some of my friends, and if I didn't know better, I would think someone from a foreign country was writing their posts. The mother of two of these kids says "oh, they're just kids" (she probably would have spelled it 'their') and it doesn't matter because it's just Facebook. Why doesn't it matter? You either know how to speak and write correctly, or you don't, and being correct shouldn't be limited to school. Am I judging this Mom because I think she isn't teaching her kids proper grammar? Or is it just my opinion? Even worse, she lets her underage (17) son drink beer, chew tobacco and drive without a license, and she allowed her 13 year old daughter to get her nose pierced. This ENRAGES me. I know it is none of my business. I know that I am not perfect and I know there are things people think I could do differently with my daughter. (You wouldn't believe how many people are against home schooling!) But I just can't help myself! When the nose piercing incident happened, I said to my friend: "What is WRONG with you? What kind of image do you want your daughter to project?" I later apologized to her and explained I have a hard time keeping my mouth shut. She has known me since the 6th grade, so she knows this about me, but I could tell she was taken aback. I wouldn't have said anything had I not known the person long, but I suppose because we confide in each other often and were pretty close at one time, I felt I was within my 'rights' to express my opinion.

In retrospect, I realize I was judging her. The dictionary defines 'judge' as:

1.

a public officer authorized to hear and decide cases in a court of law; a magistrate charged with the administration of justice.

2.

a person appointed to decide in any competition, contest, or matter at issue; authorized arbiter: the judges of a beauty contest.

3.

a person qualified to pass a critical judgment: a good judge of horses.

4.

an administrative head of Israel in the period between the death of Joshua and the accession to the throne by Saul.

5.

(especially in rural areas) a county official with supervisory duties, often employed part-time or on an honorary basis.

Obviously, I am not a paid official,  or authorized administrative head. Does this mean I should never share my opinion as to what is right or wrong? There are opinions, and there are things that are down right factual. For example, letting your underage child drink alcohol and drive with no license is illegal, and it is not just my opinion that it shouldn't be done. On the other hand, I am aware it's my opinion that you shouldn't let a girl who has barely reached her teen years get her nose pierced. I guess what I am saying is, just because I think it, doesn't mean I have to verbalize it. This is something I really need to work on. It's just so hard, though, when you witness something you feel is morally reprehensible, to keep your mouth shut - at least it is for me.

I Voted For The Tall, Rich, Handsome Guy

I am more than a little upset about Obama being re-elected. I will proudly say I voted for Mitt Romney and although I kind of suspected Obama would win, Mr. Romney gave me hope that maybe it wouldn't  happen.

This is not about my simply siding with a particular party. I know and accept that people have different views on what our taxes should be spent on and there are social issues that people have every right to form their own opinions about, such as gay marriage, etc. I believe those issues should be left up to the States and the Federal government should stay out of it.  This is what makes America great - the right to form your own opinions and live where these opinions are shared. It is also a person's right to choose how much education he receives to assure he will be successful in life. We live in a free enterprise society (albeit perhaps not for much longer) and hard work and determination will make you successful. You shouldn't be 'punished'  because you are successful. Your own success should be celebrated how you and your family choose.  People can celebrate by living well and can share their success with those less fortunate, but it shouldn't be a requirement.

I won't say too much about the mess Obama has gotten this country into, because people are already aware of that. For some reason, they ignored all of that and sill voted for the guy. More than his obvious screw-ups. what scares me the most is how little we know about this guy. I am not someone who believes everything she reads, but there is enough evidence out there to suggest Obama is not who he says he is, and that he is not out to better this country. I think he would be better suited to be in the entertainment industry as an actor or maybe a singer. The guy wants to be a Rock Star. He wants to be in the public eye. He wants to live in a nice house. I don't think he has a clue what the hell he is doing and is flying by the seat of his pants. I am so embarrassed for our country when I see him dancing on the Ellen show and chatting up celebrities. He and his wife have no knowledge of protocol when it comes to meeting foreign leaders. He changes his mind on issues depending on what he thinks people want to hear. He was against gay marriage, then he said he was fine with it, and now that he has been re-elected he says it should be left up to the States.  I could go on and on with the specifics, but the bottom line is, I don't trust this man. I don't believe a word he says. I can't stand his voice. I hate the way he walks. Most of all, I am scared. It frightens me to think of the world my daughter will be living in. Things pop in my mind, like, lining up for gas and food rationing.

After the election, I told myself I wasn't going to watch the news anymore. I want to be ignorant. I don't want to know what this man is doing to us and I want to just stay in my little bubble with my family. I know this frame of mind won't last, though, because I am  the type of person who likes to stay informed.

I don't care what color Obama is. I am getting sick and tired of his race being brought up every time I take issue with him. I do believe his race enabled him to win his first term, but that is an observation, not a criticism. Mitt Romney would have been the best President since Ronald Reagan. I like Mitt so much as a person. I believe what he says. I trust him.  I like the things he has done with his life and the love he has for his wife and family. Speaking of which, Ann Romney is just about the classiest woman on the planet. I would have been so proud to have her be our First Lady. Michelle Obama just uses her position to take lavish vacations and bill expensive lingerie to the tax payers.  Mitt Romney cares about people and is so smart about business. I hope I get to meet him some day. It would be such an honor.

For Natalie

A few days ago I received a package in the mail from a friend I went to High School with. She lives in another state, but we keep in touch via Facebook and phone. She hasn't been around me since I developed Neuropathy, but I have told her about my pain and how it affects everything else in my life. The package contained hair products I have been wanting to try out, but couldn't justify spending $30 a bottle at this juncture in my life. I had casually mentioned wanting to try out this product (which, of course, is CRUELTY-FREE!!) to Natalie on the phone once, and she remembered and thought enough to make a care package for me and surprise me with it. It's not even my birthday!  I was so excited it was almost silly! To know you're being thought of, particularly when you're going through a rough time, well, there's no better feeling. If you know anything about chronic pain, you know it casts a dark shadow over even the simplest things. It is very difficult to stay positive and you sort of want to retreat into your own little cocoon and hide away. Knowing that someone is in my corner rooting for me is really liberating, particularly since I have several friends who have conveniently disappeared over the years as my activity level has diminished.

So, thank you, Natalie! Thank you for realizing that even though I can't go dancing anymore, even though my 'long walks on the beach' days are long gone, I still want to feel pretty. I'm still a girl. Thank you for remembering I am still a human being.