Blog Spotlight: Chronically Creative

I am spending some much needed alone time while the toddler is napping reading blogs. I stumbled across this post in my random browsing and it is one of the most heartfelt and relatable posts I have ever come across. I feel like I can relate to what Emily, Miss Chronically Creative, writes as she explains what it is like trying to maintain relationships with a chronic illness. Finding things that we can hope for during our most lonely periods is important. For me, it is reading blogs and now writing one. I find comfort in reading other people's stories, and it is one thing that keeps me going. Thank you Emily, if you are to find this. Your blog is very inspiring and I appreciate your honesty.

Check it out here:

Chronically Creative

http://www.chronicallycreative.net/2012/09/finding-hope-in-loneliness.html

HUGS; 6 ways To Avoid Them

This is typically what I think to myself when people try to hug me. Not because I don't like hugs, but because they stinking HURT! Especially when they squeeze just a little bit...... and it feels like they are the Hulk and they are crushing every bone in your body with little effort. There are a few things you can do to avoid hugs:

1. Awkwardly pull back into a half-ass handshake, and act like that was what you were going for the whole time.

2. Point into space and claim you saw aliens. "Hey, look over there!"

3. Claim you are terrified of germs. "Eww, gross, don't touch me."

 

4. Act so completely insane that the person decides not to hug you.

5. Run away, hide, or escape.

 



6. Flat out deny the hug.

 

 

-Aimee

Speaking Up On Fibromyalgia

Fibromyalgia and chronic pain conditions are awfully lonely ailments to live with. Not many people know that millions of people live in nearly constant pain. It is not common knowledge. In fact, although fibromyalgia has been around for numerous years, it has only been almost fully accepted within the last few years. Most of the time if you were to tell someone that you had fibromyalgia they would look at you like you have 8 heads. So even if it is accepted by the medical community, it is still not a condition that is widely known by everyday people. Of course, once you are diagnosed, your family may become more knowledgeable about it if you are lucky. They might try to do some research and learn the most they can about it, but most won't. Though, in my own opinion, if they truly cared they would make an effort to at least educate themselves about your condition and how it affects you. But, on the other side, it is also our responsibility to help them become more educated about our condition. This is the hard part! There are some resources out there with things you can print off for your family members, but most do not really touch on what it is really like to live with chronic pain. So what can we do? We could make our own pamphlet with all the information we feel is relevant to our situation. We could write a poem or letter to our family members. We could draw what we think chronic pain looks like. We could write a song or prepare some sort of speech. Whatever your talents are focus on that to get you started. If you are good at drawing, start there. Let's create some amazing informational pieces for family members that millions of people could use to help them describe what it is like. Let's raise awareness! If you know of any great resources, please share.

Really, one of the first tasks to tackle after being diagnosed is to talk to your family and friends. This sounds so simple, but yet it is one of the most difficult things to do. I struggle with this every day. One thing we always worry about is that we won't be taken seriously. This usually stems from the years it takes to even get a diagnosis and the years we felt misunderstood and ignored by our doctors, family members, and friends. We could have spent years of our lives being thought of as lazy, crazy, or as hypochondriacs, I know I did. Those were the most difficult years of my life, and I just learned to change the way I relate to people including becoming more closed off about my illness. Besides feeling misunderstood we also don't want to complain to people. When we do talk about it, we assume that the person having to listen to us thinks we are only complaining and whining about our misfortune when really, we just need to vent, to be heard. We worry that we will put extra burden on our loved ones by telling them about it. We don't want to make others worry about us or feel sorry for us, we just want understanding. Mostly, we don't want to hurt people, and we know that the people that love us hurt when they know we are suffering. It isn't easy on them either. Watching the one you love suffer and not being able to do anything to help. I imagine it is a harsh reality for them as well. So, not only does our illness cause us to suffer, but also those around us as well.

If you broke your leg or have some sort of skin condition, there is at least some story behind it or some physical evidence of it being there. People can see it. You have a cast that is visible and often other people have broken something and can relate in some way, or they might even ask about it. It is not like that with an invisible illness. For the most part, nobody has any idea you even have a chronic illness. Nobody is going to ask about something they do not know about. Nobody is going to say, "Oh, how much longer until you are all healed up?" (and if they did, we would probably get a bit bent over the comment). There is no healing of chronic conditions. They are just that, CHRONIC, meaning long-term, FOREVER! It will not go away, and it cannot be cured. Yes, there are things that can help some, but it is something we will live with for the rest of our lives. The pain, the fatigue, the brain fog, the unbearable twitching, and wreathing, and crawling, and stabbing sensations. The bowel irritability, the depression and anxiety spells, the exertion intolerance, the hundreds of symptoms. Those are not going away. In a way, we learn to live this way. We teach ourselves how to ignore the pain and twitching. We learn how to hide our symptoms. We learn how to get around and space out our days. We learn what helps and what doesn't. Honestly, chronic illness is very time consuming. It is amazing how much effort and time goes into trying to make yourself feel just a little bit better. Hours and hours every month spent in doctors' offices, physical therapy, and other therapies. Not to mention the amount of time we spend trying to learn as much as possible about your particular illness. I don't know about you all, but I spend hours learning about all of my illnesses and trying my best to find things that can help me more. I like to be educated about whatever I am dealing with, so much of my time goes into that.

In all reality, it's not like you can strike up a conversation about pain. Nobody really wants to talk about pain or unfortunate situations. It is only in our nature to avoid subjects involving pain and unpleasantness. Besides, trying to talk about our unpleasant symptoms only makes other people feel uncomfortable. We see it, and we really try not to make people feel uncomfortable with us. We feel as if we are dragging our loved ones down with us. This is not something we want to do. Hence the reason we typically just stay quiet about it. There is no sense in making other people awkward and uncomfortable along with us. Why drag others down with us? But, what happens when we avoid talking about our situation for extended periods of time?  Well, we go bat-shit crazy is what happens.

We tend to start secluding ourselves from the outside world for fear of the pain brought upon ourselves and others. We fear pain so much that it controls every waking decision of our lives. We start obsessing on how to make ourselves better. We hide from our friends and family so they don't find out how bad it really is. We fight tooth and nail to make it through the rough times, and we use every bit of energy trying to get well again knowing that it may never happen. We loose ourselves in the midst of our illness.

If we do not find some sort of way to communicate, our illness can and will consume us. So, I suppose that whether or not we are perceived as whining, lazy, hypochondriacs we have got to speak up and speak out. Write a poem, a speech, a letter. Make a blog, a diary, a craft collection. Raise awareness and don't be ashamed. Attend a support group, or create a chronic illness event. Do what makes you happy and allows you to have a voice. Let's stop being ashamed, scared, and secluded. Let's find a cure!

The Rescheduling of HCPs and How it Affects People with Chronic Pain

The DEA's rescheduling of narcotics has affected the chronic pain community in a huge way. It has resulted in only more suffering for those who live with chronic pain. Many patients have lost their access to pain prescriptions all together, and those that were able to keep their prescriptions are now under more scrutiny than ever. Patients that were able to continue their prescriptions after the rescheduling of narcotic medications essentially began being treated as potential criminals. They are often asked to sign contracts by the doctors who prescribe them their medications allowing the doctor to take a urine sample at any time, any day. This is for the same reasons that are for the people on probation and parole; to make sure they are not doing anything they shouldn't. This protects the doctor, and allows the DEA to have control over how much of the prescription medications are given out and watch to see if they are being abused. These contracts typically contain components forbidding the recipient from selling or giving their prescriptions to other people. Something someone in severe pain most likely would never do. They need those medications for themselves and cannot afford to loose them.  The contract may also allow your prescriptions to be counted at any time as well. Under the DEA's restrictions, you may also be subject to less medications for per refill, add needing a physical prescription versus an electronically sent prescription for every single refill. This means that you must visit your doctor every time you need a refill to retrieve a paper prescription. More doctors visits means more money is needed for co-pays, deductibles, and travel. Travel is especially expensive for those who travel to a neighboring city for doctor's visits. This results in time needing to be taken off from work as well. Less pay and more need for income to pay for such a luxury as to have some pain relief. Yet, those of us that cannot even obtain a prescription for various reasons are envious of those that have the chance to even endure that struggle. We would jump through those hoops and endure the extra milestones just to receive such relief.

Unfortunately, these restrictions are not easy on the medical providers either. Often, they feel like they cannot meet their pain patient's needs. If they do prescribe a certain amount of prescription pain medications then they soon become the subject of scrutiny by the DEA. They can have only a certain amount of patients on pain medications (here it is 12) before they start being investigated. Out of the hundreds of patients they see, they must choose the 12 most deserving people, and hope to find some backup form of relief for the others. The problem is, with chronic pain, there is not really any other form of relief. Please realize that your health care provider probably does not agree with these restrictions either. They are only trying to protect themselves and their practice from the DEA, and that is not something we can take personally.

When people in chronic pain do get a pain prescription from their doctor, getting it from the pharmacy is a whole other problem. Often, the pharmacies run out because of the current restrictions. Even if they do not run out, the pharmacists are able to choose who can and who cannot get their prescriptions. People who pick up prescriptions for pain killers from pharmacies often feel like they are under tremendous scrutiny by the pharmacists and others around them.

So, those of us with pain are often left in the sidelines of this "war against narcotics". We have very little access to treatments that we do find helpful. Some people may benefit slightly from their antidepressant/diet/exercise regimen, but most do not. Although antidepressants are helpful for those that do exhibit depressive symptoms, but what about those who don't? I was not depressed before I was started on a whole array of different antidepressants. After taking them for some time, I became very depressed. They are not meant to be used for people who are not depressed to begin with because they tend to have the opposite effect. I have tried the two FDA approved medications for fibromyalgia with little to no improvement. I take my vitamins and minerals. I take my muscle relaxers. I use essential oils. I have regular chiropractic adjustments. I do stretches. I exercise regularly. I do acupuncture. I eat well. I fill my body with mostly healthy things. I have detoxed. I research regularly and try new things ALL THE TIME. I have tried nearly every trick in the book to find some sort of relief, but so far not a damn thing has made enough of a difference for me to continue it. The doctor has no idea what to do with me, my family has no idea what to do with me, I have no idea what to do with me. I feel like I have reached to end of my rope, and that nothing can help me. I will keep trying of course, but I am running out of things to try.

Now, I kind of feel like there are two solutions to help alleviate some of the pain, yet they are both illegal. I could go out and buy a pain prescription from somebody, but for many reasons, it is a bad idea. I have thought about it many of times in the past, and still do. I mean if I cannot rely on my doctor, or the DEA, to at least help me make it through the day without excruciating pain, then maybe I should just help myself. Here are the problems with that: I could wind up in the legal system, and trust me, I have met plenty of people that have wound up in the system for 6 plus years for a pill or two. If it is not your prescription, it is a big deal. Very unwise, but doable. Imagine the price of living that way though, both for the money cost, and for the chance you were caught. That is jail time, and if you are lucky, pre-release, then probation for many years after that. Nothing I am interested in. If I beg my doctor then I will only look like a drug seeker. But, really, I am only seeking some relief! My age is an obstacle, I mean who would give a pain killer script to a healthy "looking" 24 year old? I just want something to help!

Another option is marijuana. I do use marijuana for my symptoms. No I do not just lounge around my house eating cookies, no I am not a "stoner", nor do I abuse the herb. But, to be able to find something that could bring some relief with it is downright wonderful. It helps, not tremendously, but it makes a noticeable difference in the amount I can accomplish with it versus what I can without. It allows me to complete my chores around the house, cook meals, and everyday tasks that need doing. I do not want to sit around when I am using it, I want to get things done because I feel well enough to do them, or at least push my way through them. Marijuana allows me to do that. Problem with this is, it is not a medication that I can take at work. So, work becomes the most painful and difficult part of my day, everyday. 

The troubling part is, my marijuana use is illegal. It is not legal in my state except for medical reasons. But, do not have my card because of the cost, criticism, and paper trails that come along with having one. My doctor also has not approved of the idea, so I haven't tried very hard to get one. Because of the inability to receive prescription pain killers, I have had to illegally obtain something that will help. I do not want to be a criminal, really, but I felt like I don't have much other choice at this point. Ah, thanks DEA! Congratulations you are creating thousands of criminals. Just so you know.......

Hundreds of thousands of people are left to rot in their pain state with little help from any direction. It is unfortunate being one of them. With no place in the medical system, chronic pain sufferers are kind of like the lonely outcast group with nowhere to turn. I don't know about you all, but I feel very let down and neglected by the entire health care system, the DEA, and the political groups that get to decide our fates.

In the long run, I am going to assume that it is only going to take a few more years for the legalization of marijuana, and I cannot wait for the day that I can medicate my illness in a legal manor. It is my illness, and I should be able to treat it the way I feel fit.  I am tired of living in pain, and I am tired of being left on the sideline in so many ways.



This is a judgment free zone, so feel free to leave a comment. I would like to hear your opinions, thoughts, ideas, and anything else.

-Aimee