Always an Addict

I recently switched doctors. Although my children and I shared the same doctor for over 8 years, it had become impossible to get appointments in a reasonable amount of time. This doctor knew everything about my family, and had literally been caring for my son since he was born. When she switched offices, we had followed her. Leaving her wasn't a decision taken lightly.

 I've been seeing my new doctor for over half a year now. My family was extremely pleased with her. I've been battling some pretty nasty health issues of late. On my last visit I was told they wanted to take a urine sample to see if there was another cause for my lower back pain. When they sent me an email update that the visit summary was available, I jumped over to see if the lab results were back. They weren't, but the lab summary stated, "urine today due to pain". Fast forward a couple of weeks when I log back into my account to see if the labs had posted yet, since my doctors office had not called with the results. Imagine my surprise when I saw that a full drug panel had been done on me! 

Due to my chronic pain issues, I do have a prescription of Hydrocodone 325/5mg. I am prescribed enough for 2 pills a day. Every single month I have meds left over. 

At each doctors visit I take my bottle with me. It's a habit I picked up in 2001 when I was first diagnosed and had only 4 years clean time. Since I have always filled out my doc profiles legit and checked the little box beside the question that asked about previous drug abuse, doctors worry about someone with only a few years clean that have health issues which cause chronic pain. I didn't mind....... back then! 

Now, I rarely even have a prescription for pain medication. Through the years, I managed to find alternate ways to manage my pain. I'm proud of that. Narcotic pain relief isn't really relief at all. It dulls the pain, bringing it back with a vengeance when the meds wear off. This typically results in the patient taking the medication every 4-6 hours to keep that rebound pain away. It's a nasty cycle. It's no wonder people become addicted to prescription medications so easily. But I know this! 

I've spent over a decade of my life working with addicts. I'm aware of how the medications work and why it is literally a physically painful process to come off of them once addicted. 

If I were going to abuse prescription medications, wouldn't I go to a pain clinic that takes one look at all my medical diagnosis and is ready to prescribe me anything I ask for? The same pain clinic's I've complained about for years because they don't want to manage your pain, but merely drug you enough so that you don't know who you are, much less feel pain? Why would I stick to a measly bottle of 60 5mg hydrocodone if I was looking to get high and abuse them? If I were abusing them, how could I have pills left over every month? 

This May I will celebrate 18 years clean time. 18 years of not abusing drugs, prescription medications or alcohol. 18 years is a big deal. I was 19 when I got clean. 18 years is almost half my life span. At 13 years old, I was prescribed an addictive medication. I despise that no one talked to me or my parents about the risk of addiction. I despise that, as a result, I lost the next 6 years of my life. I spent 6 years of my CHILDHOOD strung out. I've spent 36 years of my entire life CLEAN. Six years of MY life that was WASTED because a doctor felt it was more important to drug me then to deal with the effects of the abuse I was enduring. Six years of MY life that was WASTED because a doctor didn't care if I ended up addicted, as long as my parents kept bringing me back and paying the bill. I'm proud of the woman I've become. I lived through a kind of hell most people can not even imagine during the 6 years of my life that I wasn't clean. 

It wasn't easy getting clean. Getting clean meant I had to deal with my Post Traumatic Stress Disorder. Getting clean meant I had to feel emotions about incidents I just wanted to forget about. Getting clean is, to date, one of the most difficult things I ever did. As I've mentioned before, I wasn't even aware of what addiction was. Other addicts taught me about addiction. Told me what it meant, what their lives were like. Told me that I didn't want the life they had and I should get out while I was young. When I realized that I was addicted (I was 18 then), I started thinking deeply about what that meant. 6 months later I woke up one morning and declared, "I want to get clean". After the initial jokes of "take a shower" subsided, the same addicts who told me that I didn't want their life were the ones that sat by my bed as my body was wrecked for days. Yeah, getting clean was one of the worst experiences of my life. It ranks right up there with being gang raped. Getting clean is, most likely, the hardest thing any person will have to go through. It means making amends with those you've hurt. It means dealing with the hurt and pain you were trying to run away from. It means accepting responsibility for your actions. 

And apparently, to my current doctor, it means "Once an addict, always an addict".

Ironically enough, I accept the phrase "Once an addict, always an addict". I know to never take a prescription that can alter my senses if I am extremely sad, depressed, or feeling any type of negativity. I will lay in bed and suffer through my physical pain rather than take something that will also deaden the emotions I may be feeling. I know that, even though I never think about getting high anymore, that I easily could. I know that somewhere, hovering around the edges of my mind, is that girl that was so easily addicted and then kept with the addiction because it was better than dealing with the hell she was living with. The same girl who kept taking the meds even after she left her current hell, and told herself it was because of the hell she had run into. That girl is still somewhere deep inside of me. I hold all her memories, all her fears, all her reasons for running. I'm not that same girl, but I cling to the belief that she is still inside of me and could resurface. 

However, I know firsthand that having been an addict does not mean that you will never be able to remain clean I know that having been an addict doesn't mean that my pain can not be managed without abusing it. 

I know that if a doctor has concerns, they should DISCUSS THEM WITH ME, instead of being sneaky to get a drug test behind my back. I know that I deserve a doctor to be as honest and upfront with me as I've been with EVERY SINGLE ONE since the time I first got clean.

 I am angry. I am hurt. I even feel betrayed. I was told that my kidneys and bladder would be checked to attempt to determine if anything else was causing my pain besides the issue we knew of. Instead, they didn't check anything except to see if I was abusing drugs. I was lied to by my medical provider because they assumed that, since I readily admitted I had been an addict between the ages of 13 and 19, I must be an addict now.

 Guess my family will be searching for a new doctor. Honesty runs high on my list for a medical provider.

Medical Professional? Where?

I've lost track of all the specialists I've seen since I was first diagnosed in 2003. I've seen several rheumatologists, pain specialists, neurologists, cardiologist, the list goes on and on. They have all done one thing in common ....... contradicted each other. 

I can not begin to describe my frustration. Supposedly, at present, rheumatologists are the "go to" specialists for Fibromyalgia and Connective Tissue Diseases (Lupus, Rheumatoid Arthritis, etc). Yet, it seems that these specailists are at a loss. Some still feel that it's an imagined disease. Others feel that strong narcotics and muscle relaxers are the only key since it's impossible to improve quality of life. Some feel that narcotics and muscle relaxers should not be used, but rather the pain should be dealt with and used as a sign of what you should and should not do. Some believe that there are a myriad of symptoms that falls under these diseases and that they often overlap in symptoms. Others believe that there is a strict criteria of symptoms for each disease and that symptoms don't overlap. 

I have been told that my symptoms are caused by Fibromyalgia and Mixed Connective Tissue Disease. I've been told that I don't have either, and that there is something else causing the symptoms (though that doc wasn't sure what it was causing it). I've been told that I should work through the pain and that I should stop when I feel pain. I've been told that my symptoms aren't caused by either Fibro or MCTD and that I should go see a particular specialists, only to have that specialist tell me it is the Fibro and MCTD. I could go on and on. 

Now, I'm just tired and frustrated. It appears that, although diagnosed with Fibromyalgia, MCTD, and Reynaud's Phenomena.....the only one that can be successfully treated is the latter. I've been told that I'm a difficult patient and won't have any relief because I refused to the prescriptions of Oxycontin offered me. This was after I made sure the physician had duly noted my previous drug addictions as a teen. I've been told that narcotics offer no real relief to the pain and worsen the fatigue. 

I've had medications that successfully help manage my pain without affecting me mentally suddenly no longer be covered by insurance. I've had medications that would help not be covered by insurance because the FDA had not explicitly approved it for my specific use. I've been unable to get certain medical care that has been proven to help because it's considered "alternative". I've been denied medical coverage o quoted rates that were so astronomical that I'd never be able to afford it. I've had to wait over 6 months on a waiting list to get in to see a doctor. 

I've had to argue with some doctors to prescribe me certain medications that I've used before because they didn't think it would work. I've had to argue with doctors that if I'm only asking for 30 Hydrocodone's every 3 months, there is no way I'm abusing them! I've been told that if I refused the pain clinic's prescriptions (the oxycontins) then there was no point in being given prescriptions for medications not as strong. 

Why am I harping on this now? Well, I recently had a doctor's appointment. It was my second visit with this particular doctor and I'd hoped that this would be a doctor that valued the whole body approach (do these doctors exist anymore). Tired of having several different specialists who all contradict each other, I want one doctor who can assist me in finding a combination of both medicinal and non-medicinal ways to improve my quality of life. Yet this specialists literally.......yes literally.....shrugged her shoulders and told me she didn't know what to tell me. She then named out some other specialists I might could see, telling me that she knew some of my symptoms could not be caused by MCTD or Fibromyalgia. This after years of being told by other doctors that the symptoms were a direct result of these diseases. 

I've heard very good things about a handful of doctors in relation to MCTD and Fibro. Yet, none of them accept insurance, none of them are nearby, and they all want astronomical fees. 

I can't help but wonder...............what exactly is going on with the medical field these days? How can several different physicians tell me opposite things and declare them to be truths? How can medications shown to help people not be covered by insurance but medications with a lower success rate be covered? Why is it that specialists won't work together as a team, but rather feel there is some sort of competition between them? 

I long for a time when your physician knew you by name. The time when they knew your family and asked specifically about them when you came in. The time when your doctor could discuss with you all your symptoms, and various solutions as to how to treat them. A time when your doctor actually researched any symptoms they weren't familiar with and found out information about what might help. 

I'm fortunate that my children got to experience this type of care when they were first born. Their pediatricians and doctors have all either retired or moved to another practice. I've been searching for a doctor that can offer me that type of care, and am continually discouraged not to find it. 

I'm not alone in this. Many people find that they receive more information about what will help them from support groups and message boards then from specialists and physicians. More and more people are turning to online pharmacies or even moving to states where medicinal marijuana is legal. Many people have quit seeing physicians completely and turned their back on the medical field that seems to only make things worse. 

Although I feel that the health reform has a lot of good suggestions, I feel that there needs to be a focus on quality healthcare and not just quantity. I have health insurance but prior to the Clinton Administration was one who would never have qualified due to pre-existing conditions. Even now, if not for the year I spent with state funded health care, I wouldn't have the paid health insurance I have now through my husband's employer. But, if I didn't have health insurance, would I want to pay for the medical treatment that I receive now? I'm not saying that focus shouldn't be put on helping those without insurance to obtain it..............but if everyone is going to be forced to obtain insurance, then shouldn't the medical care at least be of a greater standard?

Today Sucks

Today is a bad day. Last night my joints killed me and I didn't sleep. Today I woke in immense pain and depended primarily on my electric wheelchair to get me from room to room. My pt came and worked on me for quite a bit (Thank God for her) but not long after she left her boss called and let me know that my insurance (NC Medicaid) may not pay for anymore visits. This after only 3 sessions. Yet, Medicaid is willing to pay for me to have numerous prescriptions including but not limited to narcotics, opitates, muscle relaxers and more! I'm distraught at this moment as I was really hoping the physical therapy could keep me mobile through the cooler months.

You see, this also is the face of fibro and MCTD.