I’m having surgery on Tuesday, August 29th to have some lymph nodes removed from the right side of my neck in the back that showed up in March of this year. I have swollen nodes under my left arm pit as well, and they’ve been there for a while. I’ve been extremely sick for a good 8 months or so with stomach and bowel issues. Before the nodes showed up on the back of my neck I was having some serious migraines that presented with stroke like symptoms and brain tumor symptoms! Yeah, that was terrifying, and it made that semester of school a struggle. I made it through that semester, and the migraines were diagnosed as hemiplegic migraines. I take an immune suppressant that could cause lymphoma called Enbrel, and before I was put on that I took Humira for years which also has a chance of causing lymphoma. I quit smoking a year ago, in August, and that is a bit of good news I can share with you, but I’m afraid it might have been too late of a decision to make an impact on improving my health. I’ve decided to take some control over some things that I’ve been thinking about for a while, and if it turns out that I do have cancer I’ll leave with no regret, or worry for my two beautiful children. Now, let me tell you the exciting news about the new project I’ve launched, and will be posting here to chronicle for them.
The new project launched on Saturday, August 26th with each of my girls. The project will be audio diary sessions with each of them that will be recorded on every Saturday. I want to take 15-30 minutes and have one of our conversations recorded for safe keeping. I am also leaving my own audio diary messages for them separately for them to listen to. I want to leave something for them that has a piece of me. I don’t want to be a mystery to them after I’m gone. I want my advice left there for them, my humor, some favorite music, poetry, politics, and all the sides of mom they may want to look for someday when I’m gone and they may just need a piece of me for a moment in their future.
I’ve thought a lot about this for about a year now, and I’ve concluded that if I had more of my dad left for me perhaps it wouldn’t have been so devastating for me to have buried him. There are things about my dad I never knew and I will never know. That left a bigger void and it made me feel cheated. As a young lady, it pushed me into searching for him in things that were not wise. I went into dark places to hide from the reality that he was gone because I couldn’t find him anywhere when I searched for him.
Family members would tell me that I had so much of my dad in me, but I didn’t recognize it because a large part of him was a stranger to me. I was close to my dad. He was my north star, but there was so much mystery about him that it made him into this mystical creature I longed to know more about when he was gone. I was left with no way to do that. I want my kids to be able to hear my voice and get to know me even when I’m gone because you take advantage of time when your just living life day to day. You do not think to ask questions until after the fact, so I’m going to try to leave them a road map to who I truly am. With this project being left for them it will also help them know who they truly are too.
The sessions with my youngest are called Saturday Musings. The sessions with my oldest will be called A Moment of Simplicity. I’ll be putting them up as a PodCast over at MixCloud starting next week.
From a glass house you live in
Maybe take a look in the mirror
See what you really fear
Settled in a life you hate
The neighbors you constantly rate
By the house they own, the car they drive
Or the children they raise
You believe that you merit praise
Your life is so mundane with tedious schedules
Day in, day out
It’s jealousy that drives your bigotry
One day you’ll see
When your son or daughter comes home
And they’re just like me
They’ll realize too you’re just a bigot!
Tonight marks the seventh day I’ve been completely free of any tramadol. The peak of withdrawal for me was this past Friday night. I woke up with sweats, jerking muscles that were cramping, I puked a few times, I had an excruciating headache, and once I got out of bed the panic set in. I was up all night. I could not stay asleep. When I did sleep it was in increments of thirty minutes. It was a very rough night. That next morning, I began to wonder if I needed to enter a detox facility. It was that bad. As the day went on I was exhausted but as I kept focused on music, and moving around it got easier. I am now on day eight and all the withdrawal symptoms have departed!
I feel pretty good considering all my physical infirmities. My nerve tumor pain is high part of the day, but I manage through it here at home. I had a very successful day yesterday. Yesterday I was able to go out to a doctor’s appointment, make a grocery store trip, make a Walgreens stop, make a stop at the gas station, and do my dishes at the sink! This might sound trivial to some of my readers, but for me, that is extraordinary while only being on naproxen 500mg.
I have noticed a few changes since detoxing from the tramadol too. I have been struggling with severe fatigue for years now and concentration problems. I always walked around feeling foggy, and so fatigued I could barely hold my head up most days. This last week I noticed that the foggy feeling has subsided completely. I think more clearly. I believe the tramadol must have contributed to that cloudy thinking. The fatigue I felt was probably intensified by the tramadol as well. I am still tired in the middle of the day but it isn’t nearly as bad as it was while I was taking the tramadol.
I don’t see my pain clinic until the 24th, but when I do they will have to come up with another plan for my case. I am rejecting to be treated any longer with any type of narcotic, or any type of pain treatment that my body will become dependent on, that if I choose to stop taking it, I have to deal with withdrawals like I had to face with tramadol. There has to be a better way to deal with pain patients. There has to be a way to help us without turning us into pill addicts, or physical addicts. They’re doctors who work hard to get these special degrees. They should be smart enough to figure this out.
I strongly believe marijuana should be utilized in this area. If marijuana was utilized for chronic pain patients, it would prevent addiction across the board. Science shows that cannabis is promising for pain relief. “Science also shows that addiction is very low at only 30% likely to have a dependency problem and that the 30% who develop dependency are people who have psychiatric issues before use” (Hasin).
It is time that our nation takes the stigma that surrounds cannabis and completely remove it. We must begin taking rational steps in solving problems we face with addiction to opiates and other opiate type medicine, like tramadol. Cannabis is one logical step! We must begin taking logical steps in treating chronic pain patients and stop imagining they do not exist, that they do not matter, or that their quality of life is not just as important as any other patient treated in our nation. Cannabis would help so many avoid opiate addiction, it would help improve the quality of so many lives across our nation, and it would be affordable to them. If the Obama administration is serious about this new initiative to help fight opiate addiction, he will move to help legalize cannabis nationwide on the federal level for medical use with a proposed bill to congress before he leaves office. The ball is in your court Obama. Help us, not the prescription thugs!!
Hasin DS, Saha TD, Kerridge BT, et al. Prevalence of Marijuana Use Disorders in the United States Between 2001-2002 and 2012-2013. JAMA Psychiatry. 2015;72(12):1235-1242. doi:10.1001/jamapsychiatry.2015.1858.
I have been a chronic pain patient since my first back surgery in 2005. A little background: In 2005 I became unable to walk. Neurologists found a nerve tumor in my S1, L5 nerve root which was located next to the spine. The doctors also found a tarlov cyst directly next to that nerve tumor in the same scan. This was when my life changed forever. This was also when my first relapse back into opiate drug abuse would enter my life again, in a few years that followed the surgery I had, in attempts to remove the nerve tumor and to drain the tarlov cyst. For some of my readers this information is not new information. I don’t want any readers lost however so that little bit of background information is imperative to have. Fast forward to my trip to the Mayo Clinic. I cleaned myself up from using opiates. My pain was unbearable. I could barely walk, I still couldn’t drive and I was unable to work.
I reached out to the top neurology team at the Mayo Clinic in Rochester, Minnesota in hopes that they could tell me there was a surgery that could be done there to fix me so that I could no longer depend on pain meds. I wanted to go back to work, to drive again, and walk again like a normal woman! They were the best in the nation so if anyone could fix me I knew it would be them. I went through a series of scans, and tests. The results were heartbreaking.
The visit left me helpless and permanently disabled with no hope. The team of doctors typed up a report that informed me that there was no surgical fix to my specific case which was so rare that only two people in the United States have the type of non-cancerous nerve tumor I have. They explained that because my nerve had braided itself around the tumor that removing the tumor from the nerve (sciatic nerve) it would leave me with no use of my right extremities, with no control of the bowel and bladder functions so it was best that I seek out a pain clinic to help me manage the nerve pain. The report included an EMG result which showed the previous surgery I had in 2005 left me with nerve damage in the right foot which had not regenerated or repaired itself. They referred me to MAPS.
Fast forward to 2011. MAPS tries to convince me to have a medicine pump implanted into my back and I strongly object. I start out with receiving injections of a cocktail of steroids and pain medicine. Epidural injections, and a few others. They work wonders! I start walking without a cane more often. I start doing physical therapy for a while in a heated tub. There appears to be a light at the end of the tunnel. Well, the insurance must have seen this light! The light suddenly gets smashed! The insurance suddenly starts denying payment and approval for these injections. I am now faced with the decision to either live with the excruciating nerve pain and go back to not walking most days or allow MAPS to medicate me. During this time also they opted to put me into a trial for an implanted device called a neurostimulator for the nerve. The trial was amazing and it worked so I got a surgery in 2011 to have the device implanted into my back. The machine got me back to walking but it did not get rid of all of my nerve pain so I needed a nerve agent to help with pain. The taste I got back of the freedom I lost for so many years I was quick to choose medications with strict rules. I told the doctors I refuse to go on any opiate based medications. I did not want to be on any addictive prescription.
The PA in charge of my case at the time (2011-2012) throws out the medication name tramadol. She asked me if I have ever heard of it and I said no. She continued to tell me that it was fairly new to the market, which I now know was a bold face lie, she tells me it wasn’t an opiate but an anesthesia base medicine that works well with nerve pain and she thought it matched well with my case. She said it showed no addiction properties in all studies done and no signs of abuse in studies. She told me that people shown to do very well on a very low dose. I was excited to hear all this positive stuff. It wasn’t an opiate, it was going to work on my nerve pain, it wasn’t risky, so I did what any person would do in my situation, I said sign me up! What a huge mistake!!
The first time I realized that tramadol was actually highly physically addictive was when the clinic left me in a situation where I actually ran out of my medicine in early 2015 (I believe it was 2015 or may have been late 2014). I found out the hard way. I had no warnings and it came out of left field. No one ever informed me the pill would throw me into withdrawals! I went without my meds for two days and when I called the clinic they called in my prescription. This was before a law prevented them from calling in scripts over the phone, and this was before tramadol’s drug schedule was changed. When I called the clinic for the refill and explained to them I thought I was actually going through withdrawals they acted like they did not believe me but called in the script anyway. Fast forward to 2016.
This is the second time the clinic has left me in a position where I am dry of my tramadol. Due to a new law they have to do face to face every three months, the patient has to pee in a cup for drug tests, and they are not allowed to send scripts to Walgreens until those requirements are met. Making an appointment to line up with your med count is damn near impossible because they only can schedule so far out in the month, they book up extremely fast, a working mother, and a full time student that makes things even harder. I made a decision that I am NOT going back on the tramadol. I don’t care how bad the nerve pain gets. They will have to find another way to treat it. The withdrawals have been a nightmare!
I knew I was going to run out before my appointment on the 24th of this month so I started tapering off immediately weeks ago. I am on day two of absolutely no tramadol. Yesterday was the worst! My entire body feels like my nerve endings are sending continual shocks throughout nonstop. I sweat profusely, and then shake with chills. I feel very anxious! I have twitches and I can’t seem to sit still for very long. Moving around helps. I paced a lot yesterday, today it is a little better but still have to move a lot. Music seems to help keep my brain focused at least on something other than the anxiety it feels of not having the drug. I’ve been utilizing my heating pads to help with pain. I’m glad my semester ended! I feel pins and needles in my fingers and toes constantly since I started tapering the tramadol and it has only gotten worse since I’ve gone down to no tramadol at all. I have this strange feeling in my brain I can’t quite explain that started yesterday. It is like I am on the verge of paranoia and fogginess…like I think something is there or feel something is there but I’m logical enough to know there isn’t. It is hard to explain. I have a very heavy ringing in my ears. I haven’t been able to sleep except in small increments of 30 minutes. Last night was terrible! I tossed and turned all night and woke up soaked with sweat and had to shower immediately. I have NEVER had that happen, even with the flu!!! My muscles have been cramping. I am very emotional too! I cry one minute and am very angry the next. You don’t want to know about the bathroom stuff…I know that is only going to get worse by day three…my stomach cramps now, it just started actually. I feel nauseous. I had actually decided to quit smoking a few days ago. That was a bad idea. I know that sounds stupid but it was. I had to go buy a pack of smokes because nicotine withdrawal on top of tramadol nicotine was too much for my brain. The nicotine has actually helped ease some of the brain anxiety at least. I still feel very anxious. This shit is scary…. I’m not exaggerating.
I spent a lot of today reading about this wicked poison tramadol. I cried actually at some of the stories I read. I know some of the emotional stuff is the tramadol withdrawal but the stories were sad, scary, and infuriating too. I was so angry I wasn’t told about the addictive nature of this pill from my clinic. I was angry that here I am AGAIN a fucking addict! This time both of my kids are seeing me suffer through this nightmare. Not the same kind of addict I was in the past but nonetheless an addict. A PHYSICAL ADDICT that this clinic created. I was someone who needed help and now I need even more help than when I first began! Why can’t they just let me use fucking weed, FOR REAL now! I don’t fucking get it. I don’t understand it!!!!! It infuriates me. My life is hell right now. I remember cleaning myself off opium…no fun…I remember cleaning myself off the opiates…worse than the opium…. coming off this tramadol of five years…a FUCKING NIGHTMARE I wouldn’t wish on anyone…I know this is just the beginning too. It is going to get worse before it gets easier. My brain and body is going to go ape shit crazy in a week when my pain has nothing to ease it and the brain doesn’t know what to do with the signals because for five years it slept while a drug did its job…I’m pretty scared actually…I’m taking naproxen 500 mg to help with my pain and I do have some left over lidoderm patches if nerve pain gets out of hand to hold me over a few weeks. My main concern is getting my brain trained again to deal with signals being sent and levels of serotonin and all the chemicals that that tramadol screwed with for five years…I wonder how long that is going to take?
It says here, https://www.addictioncenter.com/painkillers/tramadol/withdrawal-detox/ that, “In response, the brain adapts to the constant presence of the drug and adjusts chemically. Because of the influx of tramadol, the brain attempts to self regulate by speeding up and slowing down some of its processes. When the user suddenly stops taking the drug, the brain goes into “overdrive,” causing moderate to severe withdrawal symptoms” (addictioncenter). The timeline below from the AddictionCenter webpage is just for withdrawal symptoms not how long the brain takes to be normal again chemically. I guess I have a rough two weeks ahead of me….
|Days 1-3||Onset of general withdrawal symptoms, including feelings of pins and needles, sweating, nervousness, nausea, anxiety, palpitations, insomnia and drug cravings.|
|Days 4-7||Drug cravings persist, along with insomnia, disorientation and confusion, and blurred vision.|
|Days 8-14||Symptoms should be fairly mild by this point. Depression, anxiety, and irrational thoughts may persist.|
She stood on stage where she played her part?
A part she never auditioned to play.
She stood on the mark someone else placed.
Putting her center stage.
She felt like running stage left!
Her costume was torn,
Her makeup was tarnished,
Her lines were all wrong.
She wasn’t the playwright of this show?
She was completely out of control!