NOTHING STAYS THE SAME

One day it's 110.

One day it's 70.

One day the humidity is 6%

One day the humidity is 40%

I feel like a wandering soul that is seeking equilibrium. Hence the name. Everything is the same and yet nothing stays the same. How do you find peace in that kind of environment?

I've been going to the support group and met some really nice women. My initial feelings about the group is that they try too hard to skirt the real issues of Fibromyalgia. I may be totally way off base because this is only my second time there, however, it seems like they only want it to be upbeat. I feel bad saying this because I really like these women AND I've been in a real pissy mood lately. Chalk it up to the heat or the flare, I don't know, but maybe it's just my mood. Believe me, it hasn't been pretty. Physically and emotionally, I've been on a major roller coaster so please read the rest of this with that in mind. It could all be in my mind.

I know that no one wants or needs to go to a real downer meeting but there are real problems that need to be faced with Fibromyalgia. There are people that need to speak out about how they feel because that might be the only place where they can speak. There are emotional, physical and financial issues. It would be nice to have support but I think people are very frightened of pain; even those people that experience it on a daily basis.  Pain touches us on a real primal level. We become fearful and automatically back away but we need to reach out and  embrace it because if we don't no one will. I also think that we've become so used to rejection, by both the medical community and our own family and friends, that we are afraid to look vulnerable. 

Again, I know that no one needs to get more depressed than they probably are but there needs to be a time set aside where people can express themselves so they don't feel like they're out there on their own. There are other people that feel the same way, have the same thoughts and hate this illness as much as they do.

There's a double edged sword to this invisible illness and sometimes we use it on ourselves. We want so desperately to come out of the shadows but when we do we deny the very feelings we want to express. We understand what we are going through on a daily basis and those feelings need to be addressed in a venue where we can feel safe and supported. 

We live in a world of an invisible illness. The last place we need to feel invisible is in our support group. 

AWAKE AWAKE AWAKE

I mentioned a soapbox in the last post.

I got on one.

I got down.

Stupid me.

I just couldn't keep my mouth shut.

I started looking at the different kind of pills out there for Fibromyalgia. When I got to the sleep inducers I casually mentioned that I didn't want to take them. Right now I wish I had one. It's 4:30 and I'm awake.

Why am I awake? The tooth that the dentist worked on again today is throbbing. It was Day 2 of the root canal. Oh joy. So I just took another pain pill and I hope it works. 

Also, I worked on the last post until 2 and now its 4:30. If that tells me anything this is going to be a very pissy day. I should have just shut down when I first started to get tired but, no, I wanted to keep reading about treatments.

I think I'm going to put on a movie and scowl.

WHAT IS OUT THERE?

I was wondering about the treatments that are out there for Fibromyalgia. There is so much confusion about the drugs that are approved for this disease. What are the drugs and what are the side effects?

Let's start out with the antidepressants. First of all, too many doctors feel that we are depressed and that is why we feel the way we do. So what do they do? They pull out their prescription pad and write us a script for an antidepressant and hope we go away. Personally, this is why I don't like the use of them. I'm not saying they are not helpful in the treatment of the depression that we get as a result of chronic pain or that we shouldn't be prescribed antidepressants. I'm just sensitive to doctors using it as a catch-all so we go away. 

Antidepressants such as Cymbalta, Savella, Paxil, Zoloft, Elavil have been used to decrease the pain of Fibromyalgia as well as depression. The side effects are nausea, vomiting, dizziness, drowsiness, dry mouth, tiredness and trouble sleeping. In the case of Savella, one of the side effects is suicidal thoughts and you are instructed to call your doctor immediately if this occurs.  Again, I'm not against any taking antidepressants, they're just not for me. I'm not comfortable with something that with causes that kind of gastrointestinal upset. If I start to throw up the medication is going to go out the window. Sometimes the side effects are worse than the disease that you are trying to medicate. They have been helpful for some people so it might be an avenue if you suffer from depression.

Then there are the analgesics; the pain killers. They include anything from the over the counter Tylenol to the prescribed narcotics such as oxycodone. These medications don't alter the Fibromyalgia but they do take the edge off of the pain. The major side effects are drowsiness and some people have stomach upset. Doctors don't like to prescribe narcotics long term due to dependence and addiction. I think this country has a very skewed view on pain. We'd rather someone be in pain than risk addiction. How stupid is that? I understand there is a huge abuse problem with prescription drugs, however, we cannot alter the system because of those who do abuse the drugs. There are chronic pain problems out there and we should not have to live in pain. Dependence is much different than addiction. The thing you have to be careful of is acetaminophen because it can be toxic and harmful to your liver. I asked for oxycodone because lortab had acetaminophen in it and I didn't want to take the chance that I would have liver damage by being on it long term.

Next there are muscle relaxers. They can decrease the pain as well. I know the muscle spasms I get in my legs make me want to take a baseball bat to them. I do take Zanaflex because it is also an antispasticity and helps relieve the muscle spasms. The side effects of muscle relaxers can be drowsiness but if that happens you can take them at night to help you get some sleep.

Anti-inflammatory medicines are also prescribed such as Celebrex and naproxen. The side effects can be bleeding from stomach ulcers. Well, that would do it right there for me but some people tolerate it very well.

Sleep. What we wouldn't give for a full nights restful sleep. There are medications like Ambien and Lunesta. I've never tried them because, for me, when I take the muscle relaxers, pain medications and melatonin I do get some sleep. I'm a little scared to add a sleeping pill on top of all of that. I've heard that you do sleep though and that could be wonderful. A whole nights sleep! Just think!

Anti-anxiety medicine like Xanax or Klonopin helps because anxiety contributes to muscle pain, irritability and tension. The problem is that the side effects can be depression and decreased memory.  The good thing is that these can help with sleep and the muscle spasms in the legs.

Then there are the anticonvulsants. Lyrica, which I am not crazy about, has weight gain as a side effect and hell will freeze over before I subject myself to that. Then there is neurontin and gabapentin and topiramate. I didn't do well on the neurontin. I got agitated and restless but it was when I started getting severely depressed that I knew I needed to see the doctor and get off this medication. I have a girlfriend with MS and she takes quite a bit of it with no problem but I couldn't take it at all. I've taken topiramate with no problem and it does help the pain somewhat.

I guess what I am trying to say in all of this is that there is a veritable cornucopia of medications out there that can help manage Fibromyalgia. Some of them will work for you and some won't. We have different needs and tolerate medications differently as well. I don't think we should have to live our lives in pain. I think there are things that we can do to at least take the edge off. We have enough to deal with trying to manage all the facets of this disease, so if we can have a little relief, I welcome it.

Soapbox done. I'm stepping down now.

FRIED EGGS AND FANS

Or is that Green Eggs and Ham?

I do not like the heat

I do not think it's a treat

I do not like it anywhere

I do not like it in my hair

I do not like Green Eggs and Ham

I do not like them

Sam I am

I know it's summer and this is to be expected. I always whine about the heat because unless I'm floating on a raft in the pool, I don't enjoy it. I've always liked the cold weather better than the hot weather of summer. I figure that you can always pile on clothes and get warm but you can only strip down so far...... and you will still be hot...... and I don't like being hot.


This must be a 50's thing.

I like the house around 70. I sleep better (when I sleep) at that temperature especially if there are fans going at the same time. I have wind shear in my bedroom. Picture it, I have the ceiling fan going at full speed, a fan on my nightstand pointed toward the bedroom door and one on the dresser pointed at the bed. I basically have hurricane force winds going around my bedroom so I can stay cool. The only problem is the gale force winds tends to dry out your eyes. Mr. H loves it though; it feels like a ride in the car!

Anyway, I had to go out today to get the application signed for my handicap placards. First, I started out at my pain management doctor. They wouldn't sign the application so the orthopedic doctor was in the same complex. They were nice enough to put me in line so after two hours I walked out of there and I was on my merry way to the Department of Motor Vehicles.  Just walking into the DMV and seeing the lines wrapped around the building sent me right back out the door! Plus, it smelled to high heaven in there.  I'll go early in the morning when it's a little bit cooler and I can get out of there fast. 

Then it was back at Costco for prescriptions but they have to order one of them and they won't be in until Friday. I won't whine about being in there because there is always something to buy in there plus I just love that place! 

So, it's back at home and I'm in my old familiar position. 

Horizontal.

What can I say? 

It just feels better this way.

The good thing is that the temperatures will cool down by the weekend to the 80's. 

Thank goodness! 

This hot this soon is awful!

At least it's not humid although this heat isn't helping me at all. I'm not sure that the pain I feel is weather related. I don't know what it's related to but I'd like to disinherit this particular relative.

All I can say is that the pain is still around and the heat still sucks.

BOUND BY PAIN

 There is a cloud over me. 

It feels like impending doom. 

What is the reason for that? 

I know that I may be feeling better today but it's only temporary. 

I am bound by pain.

I tend to second guess myself now. I never used to be that way. It's as if I am on hyper-alert status watching and waiting for the boom to drop. I'll have a day where I don't feel so bad and then, without warning, I will start feeling my old friend. It just wants to drop by and say, "I'm still here so never forget that."

As if I could ever forget that.

If it isn't the humidity it's the seven-inches-from-the-midday-sun kind of heat. I've always hated it and this year is no different. I'm watching the news and there are excessive heat warnings being issued. We will be experiencing near record highs. It's funny that I stayed in Las Vegas but it's my home and my family is here. Other than that, I hate the summer months. My power bills will be through the roof because I can't sleep when it's hot in my bedroom. So from now until October I will have one other thing on my whine-bitch-moan-and-complain list and that is how fricking hot it is outdoors.

A few years ago I would be walking people through framed homes or on-site to view available home sites. Yes, I hated it but I was still able to do that. That's all changed. I went outside today and felt like I was almost going to pass out. There are just so many things that affect my body differently since the Fibromyalgia. It's as if my skin is sensitive to my surroundings. Does that make any sense? Everything feels magnified and I don't understand it.

I know that Fibromyalgia isn't as bad as other illnesses but I haven't found the golden ticket that brings me back into some semblance of a life. How do you clear the fog enough to read legal documents and comprehend what you've read? How do you get rid of the fatigue and the pain enough to want to get back into life? I find myself getting angry at the Lyrica commercial. I know it's stupid but I wish it were as simple as taking a pill and I could do all sorts of things with my hands and my head. It looks to me as if the magic pill will bring me back to the point where I was when I left. It doesn't say anything about the inevitable weight gain and what that will do to your body both physically and mentally. The other thing is that if you can't live in the present how in the heck do you plan your future?

So what to do? I am bound, not by a physical chain, but by the ugly barbed wire of pain. Even as I write this I have to stop because my hands feel heavy and weighed down. I have to move my legs because I can't stay in one position for too long. I even have to read a simple post a few times to make sure it makes sense to me. I don't feel comfortable in my own body anymore.

The only thing I can do right now is bring things around that make me happy. Aromatherapy for sleep. Music that soothes the soul. Flowers that make me smile. A lump of carbon compressed over time reveals a beautiful diamond. So that tells me that even though I am being compressed and stressed over time I will believe that I will become that diamond.

Either that or a complete basket case.