This whole worse than usual migraine thing is seriously getting to me. For those of you in the know about migraines, stress is the biggest trigger for a migraine sufferer. For me, I have been stuck in this loop de loop with the SAME migraine since 2003. Long story for tonight. I have written about it before. Long story short is that living in a chronically stressful situation for years made it impossible to break. When I got out of the situation, I didn't have the insurance. Basically, it was just a big ole mess. So, now it is all about trying to control the stress, regulating my hormones, trying to build up my adrenal gland (which produces the stress hormone), and that is just to deal with the migraine issues. The doctors are at a loss on the fibro stuff since the medication they were using to combat that caused my hair to start falling out. I think we will start a new plan soon, but an entire "family" of drugs is off the table because it contains the same stuff as the problem drug that I am titrating off of right now. There are no guarantees the new drug will work and my CRAP insurance has capped me out on any insurance on Rx for the rest of the year, so that means if it isn't a generic drug, we are looking at a really expensive medication. Yeah, I am thrilled with the options. This is pretty much why I don't talk about my medical stuff most of the time. I know I say that, but I have been talking about it a lot lately. That is because it is taking over my life right now. So...
It occurred to me while I was watching a romantic comedy this evening that maybe I should take this blog someplace more fun. Some place stress-free and fun. And that got me to thinking. I did the 30 Day Letter Challenge. That was not stress free and fun. That was cathartic and therapeutic and emotionally very healing. I cried through the letter challenge. However, it wasn't fun.
Some of you were around for the Plastic Joy Award. Purple Cow hated the Plastic Joy Award. I am not going to do that again. She might make a voo doo doll and start sticking me with needles. However, it did get me to thinking about fictional lives that I would like jump into and out of for fun. One could perceive that as a challenge, I suppose. Or not. However, I think the key here is fun. I have read some really wonderful novels that have made me cry and were written so well, but I would NOT want to be those people. Those characters hurt my heart. We are talking literal crying through most of the book, or at least half of it. It was pain. Heartbreak. Suffering. I have plenty of that right here. I am thinking more along the lines of characters that I would like TO BE. For various reasons. So, I am thinking that maybe even Purple Cow can get on board with this one, because it isn't so much about HOT MEN (which are never a bad thing, btw), but more about what qualities jazz me up in a fictional female character.
The forums for this are endless. Movies. Books. TV. You know I will have to include youtube footage for my movie and TV characters. My fictional characters from novels will be in the written word. I suppose I will rely on the author and my interpretation of why I like what the author is doing. I probably won't do this all of the time. Because every now and then I get a wild hair going about something and feel the need to blog about it. I used to do that more regularly. Of course, my thinking was less corrupted then. By that, I mean my head wasn't freaking killing me all of the time.
Before I let this post go, I want to link to a post by Martha. She is a relatively new blogger that I have been following. She is a chronic pain sufferer. She is in the process of the 30 Day Letter Writing Challenge. If you aren't in the loop yet about my Big Idea, I really don't have the wherewith all to explain it right now, but long story short. I think that the insurance companies are dictating the quality of care that we are receiving. Because of that, doctors are overbooking their schedules to make up for the fact that they cannot make enough money to meet their bills due to the fact that insurance companies decide what is "usual and customary" and they have to "eat" the rest. So, they book 3-4 patients in a 15 minute time slot. Nurses evaluate your symptoms, doctors read your chart, and 95% of the time they have diagnosed you before they walk into the room. They have to do this in order to see all of the patients scheduled for that day. You actually only have about 4 minutes allotted to you. If your "condition" is a sinus infection, strep, or something like that, this really isn't a problem. If your condition is actually the first symptom of a bigger problem and your doctor treats the symptom and not the root, this is disastrous. Why? Because YOU MAY NEVER KNOW WHAT THE ROOT OF YOUR PROBLEM IS BECAUSE IT IS SO FAR BACK IN YOUR CHART THAT YOUR DOCTOR NEVER CONNECTS THAT FIRST INNOCUOUS PROBLEM TO THE ULTIMATE THING THAT "BREAKS" YOU.
Your body is a lot like a vehicle. One thing goes wrong. If you don't "fix" it, it will cause another part to fail. If you don't fix that, it will cause more failure until you have a HUGE PROBLEM. Doctors are too busy to treat the root. They only have time to treat the symptoms. We would never accept that treatment from our mechanic if we took our car in for repair. If our mechanic told us that he was fixing our vehicle with paperclips and duct tape, we would demand that our vehicle be taken down from his lift, returned immediately, and we would never go back. Our doctors are treating us with paperclips and duct tape and we don't know it. The insurance companies are forcing this down their (and our) throats. If you have a small problem that becomes a bigger problem and your doctor continues to treat your symptoms, you MUST change doctors. There is a ROOT problem. And that is why my website is so important. No one should live in chronic pain. No one. However, until that problem is solved, the people who are living in chronic pain shouldn't be made to suffer because of the people who abuse pain medication. This whole situation makes me so angry that I really don't know who I want to slap more. Insurance companies are first. Doctors who enable abusers are second. Abusers are third. Doctors who don't stand up are fourth. Yeah, that is a lot of smacking.
You see, I am a chronic pain sufferer. Sometimes I don't take my pain medication just because I know it is doing damage to my internal organs. Yeah, I voluntarily take the hit if I think I can stand it. I take the pain medication when I just can't take it anymore. Here's the deal with chronic pain: it wears on you. Just imagine someone beating on you all day, every day, with a hammer. Sometimes hard. Sometimes soft. But all the time. For seven years. That's my story. Seven years of being hit in the head with hammer. I don't want your pity. I just want the hammer to stop hitting me in the head. I want to finally get SSD so I get insurance so I can get the medication (as in an IV), probably repeated IVs to make it stop. Then the migraine meds might work. Then I want to go through the bloodwork to find out what all of my other funky symptoms are and start treating those. I want to be able to take migraine meds when I feel one coming on and actually have it work. After that, when I have all of my issues straightened away and my website up and running, I want to help other people stop accepting paper clips and duct tape. I want to build houses. I know that there is a better way and I am going to help people get there. We are going to turn this boat around.
image found at www.weheartit.com
I love the idea of writing a blog post where you jump in and out of people's lives. and I loved loved loved the plastic joy award...mostly because I love men. lol.
ReplyDeleteWell, I hope you get your social security stuff straightened out so you can get the rest of your stuff straightened out soon as well.
Hang in there.
I believe you ARE going to help turn this around Robin. You have so much determination and spirit and even just helping people who haven't experienced what you're talking about understand it just a bit better is a start. One thing, you may suffer constantly but I admire that you don't sound beaten by it, you sound strong and I think with your attitude you will makes changes.
ReplyDeleteJust to let you know I'm thinking of you and praying that you find some relief from all this.
Take care today my dear.
AMEN!!! Amen on all counts ....
ReplyDeleteI suffer from Chronic Pain and did not know how to live with this disease and would not let me live normally. In Findrxonline found that Hydrocodone is a drug that relieves the pain. Must be taken to control because it has side effects.
ReplyDeleteI honestly hope that you can find some relief girl! I hate to think of you in pain all the time! Hugs!
ReplyDeleteI hesitantly published that comment from Brett Favree. If you click on him it takes you to a website that promos hydrocodone. Hydrocodone is a drug that is used for chronic pain. It is also highly addictive. As Martha pointed out in her blog, it is one of the most misused drugs in the industry because it is prescribed for pain in the short-term and people become addicted to the "high" because they continue to take it after their "pain" is gone. Doctors continue to prescribe and that person is now a user instead of a person in real pain. They make people who are in real pain look bad. Worse, it makes it hard to tell the difference between the two. This is tragic and why there should be some serious slapping going on. So... not sure about this site...
ReplyDeleteYeah, have some fun! the catharsis that was the letters was great, but man I understand needing something lighter and more fun!
ReplyDeleteRobin: I am sad that you are suffering, but I don't envision you as a down person. In fact, you have the greatest sense of humor I have encountered in years. You are fun! I love blogging with you because you are fun! I hope you realize it.
ReplyDeleteAs for your pain, of course, there is a better way. There are dozens of better ways than downing meds prescribed by doctors who look at you as number 857. However, after all the smoke is gone, you have to believe it first. There is hope. You must find new ways to end, rather than mask, stress.
All I know is... Pain Sucks.
ReplyDeleteI lived with chronic pain in my 20's and 30's. Got diagnosed with fibromyalgia. Yeah!
Now at 50, I've been living the past 13 years pain free and I help people get out of it.
I had to learn how to move more effectively. I know it sounds too easy right. Well yeah, right.
Our brains can actually change how the muscles hold ourselves together. It was way too tight in my case, so most movements caused pain and I was stiff, stiff, stiff.
Tried the stretching thing and didn't know that now the research proves how bad that is for us. Live and learn.
Tried to exercise my way out of it and scores of other approaches.
What I learned is how animals self-correct themself through the little known process called a pandiculation.
When your cat or dog wakes up and stretches, it isn't. It's actually contracting muscles and then releases them so the brain resets the resting levels.
Of course, just simply moving can be painful. I know... so how do we go about getting back to where we want to.
Hanna Somatic Educators systematized the animal process and call it Somatics Exercises.
These are really un-exercises since they target the part of the brain which can release the holding patterns of muscles.
If the muscles get the freedom to move, the mobility returns, then the pain can leave.
I had to learn a whole new way of moving by not moving. What's cool is that we can just imagine the movements taking place following a simple 3 step process and viola - the brain instantly changes how the muscles respond.
With a little practice, the muscles get that window of free movement. Even if it's just a millimeter, that's progress. I often say I move well on account of a few thousand millimeters of progress
Since this is a learning process, it'll take a little time to get used to feeling what that is like BUT once your brain and body remembers... you'll get it.
This is exactly what we all did in our mother's womb. This is what healthy vertebrate animals do everyday to move as well as they do.
I'm testing out a new way to give out some free somatic movements. If you want to join in and chime in, I'd love to hear your feedback. Test it here.
Move well, the alternative is what some of know.