05 April 2012

Health Activist Writer's Month Challenge Post #5

I decided to make a visual representation of some of the things that affect me. What affects me most are the JRA (which since I am an adult my docs tend to term it RA so I just used the term RA), fibromyalgia, and pain. There is not a single day that goes by that I don't deal with at least one of the three. In fact, I do NOT remember a day without pain.  I decided to make a graphic of these three things that bother me the most. I made them into monsters.  So here there are.

The RA Monster has eaten away at my bones. I have a lot of joint damage which has led to disability. I have joint contractures in both ankles that cause me to need to wear braces to even be able to stand. No more cute shoes for me! But that's ok...I CAN walk so I don't care if I have cute shoes. The RA monster has led to all of my secondary conditions like fibromyalgia, osteoarthritis, osteoporosis, and everything else I have going on. I picked this monster because it was chewing on a bone, making it appropriate since RA eventually eats away at the bones.

This is the fibromyalgia (or fibro for short) monster.  I chose it because the plethora of arms corresponds with the symptoms that fibro can cause. For me, fatigue is one of the worst. Then pain. And it is a different pain than RA. I know many people who have both RA and fibro have said they have a hard time telling which disease causes which pain. I have had that feeling as well, but most of the time, I have a fairly easy time knowing which is acting up. The biggest kind of pain fibro causes is when it makes my arms and legs feel like they are tightly encased in cement. They feel like they are heavy to lift, kinda like they're stuck in thick mud and when I try to lift them out, the mud sucks them right back in. I know that when I feel that way, I also feel so tired that I cannot think straight. I start a sentence and stop because I've lost what I am going to say, At least when I write, if I forget what I was writing, I can come back to it in a bit and not have someone waiting on me to finish what I was saying! Thankfully, the people I speak to the most, my hubby Garrin, our son Mini, our roommate Barb and my Mom, all know me well enough that they can fill in the blanks pretty well. As can my best friend Mary.  Mom and Mary are good at filling in the blanks both because they know me so well and because they both deal with the mental fog. Fibro isn't easy at all to deal with. In fact, even though RA can cause death in rare cases,  and RA is more damaging physically, I'd MUCH rather have it bothering me than fibro. For me, fibro is the more debilitating because it causes so many symptoms all at one time. When it hits, it hits hard! It's a lot harder to treat as well. There are so many ways of treating fibro and it takes a lot of trial and error to find what works, much more so than RA does, although RA also has many different ways of treating it and it also takes trial and error to find the treatment that works, with fibro it's a lot harder to treat in my experience. Other people have had milder cases of fibro that are easier to treat, and still others have had more severe cases that are harder to treat. But, to me, the octopus-like arms mimic the ways fibro can wrap itself around the different areas of life. It's pervasive, painful and very hard to live with.

The pain monster...is probably the one monster I deal with on a constant basis. It causes many problems for me. I have different types of pain:joint pain, muscle pain, nerve pain. None of them are fun!  And even within the different types of pain, there are different ways the pain feels. At times, it's a burning pain, others it's tingling. Still more ways the pain can feel are: throbbing, stabbing, dull, aching, shooting, radiating, flickering, jumping, pricking, sharp, quivering, flashing, boring, cutting, pulsing, drilling, lacerating, electric-like, beating, pounding, crushing, stinging, searing, cramping, smarting, scalding, wrenching, gnawing, itchy, burning, pulling, pressing, hot, tugging, pinching, dull, tender, tiring, sickening, sore, taut, exhausting, suffocating, hurting, rasping, aching, splitting, heavy, punishing, wretched, annoying grueling, blinding, troublesome, cruel, miserable, vicious, intense, unbearable, spreading, tight, nagging, radiating, numbing, cold, nauseating, penetrating, drawing, agonizing, piercing, squeezing, dreadful, and torturous.

I know many people who are affected by multiple pain causing conditions find it hard to decide which of the diseases is responsible for causing. I know for me, I am able to know which is which most of the time, but not always. Not knowing makes it harder to treat because different types of pain respond to different types of medication. Some pain responds to narcotic pain medications, other types of pain respond to medications that work on the nerves (such as some medications that also prevent seizures), other types respond to muscle relaxant medications. It just depends on the type of pain.

No matter what the cause is, chronic pain is a problem to deal with. It's not easy to treat. Often, it takes a number of medications that work together to help different aspects of the pain types. Pain can take over a person's life. It is best treated as early in the disease process as possible.

Another problem can be finding a pain doctor.  I'll write more about that another time though.


  1. I like you monsters! They depict the truth of it all. In regards to finding a pain management doctor, you may want to go over to my blog and read a blog I wrote entitle...Pain Management...Let the games begin. Finding a good pain management doc can be difficult as the posts explains but there are ways. I hope you find relief from all of your pain. I find it appalling that doctors in this day and age let patients suffer with these diseases. It is just plain wrong!

  2. I will have to check out that post! It is not easy to find a good pain management doc. I've heard so many awful stories.

    I am very blessed in that the first pain doc I went to, was perfect for me. We have gotten along well from day 1. I also love the nurse practitioner there. She also lives with pain so she truly does know what some of her patients are going through. In fact, I don't care which of the two they schedule me with for my monthly appts. The only time it truly matters is when I am having procedures.

    Right now my pain doc is standing in for my rheumy since I am having a bit of a problem getting in to see him. I was not gonna ask my pain doc to write the script my rheumy normally would but I wanted him to know I'd not been able to get in yet as they normally keep in touch about me. When I explained my problem (an old bill) and the problem I had with the billing dept making me feel like a dead beat. I'd been in a nursing home from Nov 2009 until Nov 2011 and not taking care of my own money or bills and then we were under the impression all of my hospital bills (from the 11 month stay) had been taken care of through Medicaid and then a foundation. The woman had told me they were going to turn it over to a bill collector. I told her I would talk to my hubby and try to see what we could do. Well 2 days later, a bill collector began calling me multiple times per day. I don't answer calls unless I recognize the phone number and they'd not leave a message. So I did a reverse lookup on the number and found out who it was.

    I hadn't meant to go into all of that but it kinda all came out. My pain doc's response was to ask me if I'd EVER had anyone on his staff act like that. My answer was a bit vehement I think but I wanted to assure him that his staff has been wonderful. They've NEVER made me feel bad, or lied to me (as others on the rheumy's staff have-and the rheumy himself told me that they got fired for that). In fact, they've all been so nice and concerned about me. They are caring, kind, friendly. I just cannot say enough about the pain doctor and his staff. He said he was glad to hear that and if that ever changed, to let him know.

    He is one of those docs who is laid back, easy to get along with, doesn't have a problem with patients who are informed, and so many other good things. I am so very thankful I found him!