Wednesday, March 25, 2015

Society fails the chronically ill

This post is based of a comment I gave in response to some criticism of my popular "Why no one cares about chronic illness, still" post. 

I am one of the lucky ones. I have some amazing friends and family who have supported me from the very beginning of my health crisis. In some ways their support protected me from the scorn of others. I wasn't protected from horrible doctors, but I wasn't left unsupported after being crushed by those doctors either. Because I had a nice supportive social structure I did not immediately realize how eviscerated people with chronic illness often are. I did not realize that society has no place for sick people. There is no societal support for someone who gets sick and loses everything. Society doesn't care that there are so many people lost in the medical system. Society doesn't care that there are very few doctors out there who will even deal with the chronically ill. Sure people care, but society does not. Society doesn't care about sick people who can't work; sick people are seen as lazy mooches who sit around and sponge off the system. 

America is a country that was based off the idea that hard work can achieve anything; that dreams don't need to be inherited they are made. But where do those who physically can't work fit into that narrative? How are they supposed to achieve the dream and why do we assume that they still need to? Society has expectations that are put on all of us and they are not rolled back just because someone has a body that doesn't work. This is a huge burden for the chronically ill. For many their failure to achieve the dream is shattering and remains a huge burden that they have to carry along with their illness. 

The biggest problem is that society has yet to adapt work conditions to the chronically ill. With the advent of virtual employment there are more options than there used to be,  but it's still difficult to find a salaried job as a virtual employee. Many of the chronically ill are already employed when they become sick and they are unable to get their employers to adapt to their disabilities. Unfortunately for them if their employer fails to adapt their employment is lost and there is no recourse. The immediate circle of family and friends might care, but no one else acknowledges the injustice of losing everything because your body fails. There's a reason the so many of the chronically ill have Go Fund Me pages, there is no place for them in the system. 

What can we do to fix this? It's not an easy question. One place to start would be better healthcare for the chronically ill. Instead of making patients schlep from doctor to doctor (none of which communicate with each other) for problems in different parts of their body, it should be possible to have a coordinated healthcare team. This way patients are not so easily lost in the cracks as they get passed back and forth from doctor to doctor. Another improvement would be finding a way to help the chronically ill to negotiate better employment options. Lets help people who want to be employed but can't work the standard full time schedule. Lets find ways to make employment more flexible through virtual opportunities. Lets force employers to make accommodations instead of firing their sick employees. There is no easy fix, but there are ways we can improve the lives of the chronically ill. There are ways to integrate the chronically ill into society and to take care of those who are physically unable to integrate. 

Monday, March 23, 2015

Keep on and keep living

I've always been able to laugh about almost any situation no matter how bad it is, and that's been my coping mechanism for surviving chronic illness. I have to admit though, I've had a hard time laughing lately. I'm not really sure where my sense of humor went but it seems to have disappeared, possibly it petered out when the weather warmed up. With the warm weather I know that I will have swollen, painful, and non functional hands for the next 9 months. Humidity is not my friend, which is unfortunate when you live on the Gulf Coast. I miss being able to use my hands.

Possibly my sense of humor is just worn out from coping for so long. After six years of trying to laugh my way through illness, I'm wearing a bit thin. My patience for other people's petty concerns seems to be decreasing even as I try to prevent it from happening. I know that empathy is the greatest gift I've been given in this journey and I hate to lose it to cynicism.  It's just hard to listen to people complain about pain they've inflicted on themselves and not want to scream about the pain I'm in due to no fault of my own. In the past I've been able to relate to people experiencing acute pain just because I know how hard pain is. Now I just want to shake them until they know how lucky they are. I need my empathy back.

Possibly my sense of humor has been beaten down because of misunderstandings. All the people who misunderstand me and my illness and feel the need to pronounce judgments leave me feeling tired and worn out. I tire of having to explain my limitations over and over again. I tire of explaining that despite my limitations I'm a human being and not exactly useless. I tire of being pushed down and out of the way. I tire of being treated like I am an inconvenience to others.  I'm just done proving my illness to people. I'm done trying to fit my illness in a nice little box that other people have built, it's just too draining.

I'm in a funk, there is no doubt about it. For now I'm just trying to hold my head up and keep on. I'm trying to help others when I can so I don't just dwell on my own problems. I'm trying to stop trying to please people who will never be pleased and go my own way. I know what I'm capable of and I'm tired of people trying to tell me differently. I'm going to keep on and keep living and keep fighting. I'll never give up.

Wednesday, March 18, 2015

Fibromyalgia and Allergies (rhinitis)

My allergies have been a nightmare lately. I figured that was partly the fault of the climate I live in, but my allergies have been worse than ever this year. That got me wondering if Fibromyalgia and allergies have any relationship and it turns out they do. The incidence of allergies is about 4-5 % higher in those that have fibromyalgia.* No one knows for sure why this is the case but one theory is that it's part of the central sensitization or how our body magnifies pain signals. Another belief is that because of the pain associated with Fibromyalgia, tight muscles can press on fluid passages in the nose and narrow them causing a backup in the sinuses. This results in a  postnasal drip which occurs even though the nose itself may be dry. This drainage can in turn cause a chronic hacking cough or raw, angry throat that can be mistaken for a cold or allergy.The medical term for this is non-allergy rhinitis and it cannot be fixed by a histamine. The symptoms are the usual suspects:

- chronic cough
- runny nose
- sinus headache
- itchy watery eyes
- post-nasal drip
- constant sneezing.

I think this may be part of the problem I have with "allergies" and why mine don't seem to respond to medicine very well. So lucky us, another problem that Fibromyalgia can potentially cause! The really frustrating part is that there is little to no treatment suggested for dealing with these problems.  Nasal decongestants are not meant to be used long term so they are unhelpful in dealing these symptoms. Saline spray used on a daily basis can help with your nose, but mostly it's just another thing that Fibro patients have to live with. I am glad to know that it wasn't all in my head, my sinuses really are completely screwed up, much like the rest of my body. Fibro really does take over everything.

Chronic rhinitis: an underrecognized association with fibromyalgia
Shankland W with J Boyd and D Starlanyl. Face the Pain: The Challenges of Facial Pain, Columbus (OH): AOmega Publishing Co., p.149.

Monday, March 16, 2015

Don't eat crap

I had a hard day yesterday and it manifested itself in my eating habits. I've been staying strong in my soda free challenge for three weeks, and yesterday I cracked. Not only to I crack on soda, I cracked on processed cookies and greasy pizza. Whoops, I blew it big time. There goes my '"taking care of my body so I can feel better" lifestyle. I'm paying for my mistake today in a big way today with increased pain.

Tanking my body on the first day of spring break was probably not the best choice. I need to time my meltdowns better, I should have them when my kids are in school. Instead I've been cranky and irritable with my kids since the moment I woke up because I've been feeling so poorly. Granted, they are being whiny goobers, but usually I have more patience for that.

I couldn't even walk off my irritability like I normally do because I had to take my kids with me and it didn't end well. My daughter whined and complained about how bike riding was hard (mind you, she's almost 8). Then my son tried to go around some jerk's trash that was blocking the sidewalk and ended up getting flung off his bike in the middle of the street. Tears and drama ensued. I needed a Dr. Pepper more than ever.

I'd like to think I've learned my lesson but we'll see. Dr. Pepper is my downfall, I crave it all the time and I know it does terrible things for me.  It's just so good. I look forward to afterlife where I can drink Dr. Pepper without consequences (I kid, I kid). Lesson learned though, if you don't want to increase your pain levels don't eat (or drink) crap.

Thursday, March 12, 2015

Invisible Illness and suicide

I read this article about an amazing women who committed suicide and it just broke my heart. She was dealing with POTS which is not a disease I know a lot about. I do know that POTS is invisible, can be related to Lyme, is often debilitating, and there isn't a large body of research about the disease. I do know that I feel for this women and that I understand what she was going through. I know what it is like to see everything you've worked for to slip through your fingers. I know what it is like to watch everyone else go on with their life while you are stuck in an endless round of pointless doctor appointments. I know what it is like to stare into the future and not know what is going to happen to you, and to know that you have no control. There are not strong enough words to describe how difficult that is.

As I sat in my car this morning struggling to find the strength to fight the battles I need to fight today I thought of this young women. I thought about what my life was like at her age. At that age I was working almost full time and going to school full time. I was partying with friends, I was looking for romance, I was trying new things, and I was having the time of my life. I can not imagine what it would've been like to get sick. I become sick when I was 25 and was much wiser than the person I had been a few years earlier, and I still barely managed to cope in the beginning. It's taken time and a lot of support from friends and family to pull me out of the hole I was in, a hole which is often easy for me to start slipping back into. I'm one of the lucky ones. I have never considered suicide myself but there have been times when the pain was so severe and my separation from other human beings so complete that I knew and understood why people with chronic diseases kill themselves.

 I've talked about suicide before here and here. I don't know that I have much more to add except that people with invisible illness are not going away. This problem is not going away and it's time for people to start caring. It's time for doctors to stop passing off the difficult patients whose cases are "too difficult" to deal with. It's time for the healthcare system to be fixed so there can be thorough treatment for these individuals.  I'll say it again, something needs to be done; there needs to be a place in the healthcare system for us because we are not going away.

Monday, March 9, 2015

A humorous visit to the doctors office

You walk in and the receptionist gives you the stink eye

So sorry for inconveniencing you by making you do your job.

You get to hang out in the waiting room with all the sick people until it's an hour past your appointment time.

So glad you had to get up two hours early to make it to your appointment on time. Amazing how if you're 10 minutes late your appointment gets cancelled, but the doctor can waltz in whenever they feel like it.

You finally get called in and go through the torturous experience of being weighed. It turns out not being able to exercise anymore has made you gain weight! Who would've thought.

You get to wait for another hour in the room. You're so bored you start listening to the doctors conversations with the people in the adjoining rooms. Hmm, I wonder if other people listen to your conversation with the doctor?

By the time the doctor arrives you're a human popsicle because it's freaking 60 degrees in there.

You may never wake up

The doctor breezes in and breezes out conveying as little information as possible while still managing to minimize your concerns and making you feel small.

Yep, so glad you charged me $200 for that.

You finally escape and though you no longer have your dignity you at least have your prescriptions filled.

Wednesday, March 4, 2015

Now I have guilt

My daughter has a presentation as school today. It's her first speech but she's already a pro. She's outgoing and not easily intimidated so she's going to do wonderfully. Today a note came home from the teacher stating the requirements for the presentation and inviting any parents that wanted to come. Here comes the guilt part- I don't want to go. I helped her write her speech, helped her practice it and came up with her costume. I've seen her speech. and I'm tired and hurting and want to stay home and rest. Of course a bunch of the other parents are going to show up and make me look like the lazy parent that I am and my daughter is going to be mad at me for not showing.  This is where having a chronic illness and being a parent really makes life difficult. I want to be that super involved Pinterest parent, but I just don't have enough energy to do everything. I prefer to save my energy for when my kids are home with me.  That way from the hours of 3-8 pm my kids have 100% of my attention and energy, but that is hard for my kids to understand.

When you get diagnosed with a chronic illness they should hand out a pamphlet, "How to deal with the guilt." No one tells you how many people you are going to let down, how many people will be disappointed you can't meet their expectations, and how horrible you will feel about not being enough. It's easy to say that we shouldn't feel guilty, but it's hard to implement that in our every day lives. When I have a pair of big brown eyes staring up at me asking me why I can't do something the other moms do, it's hard. It's just another battle that those of us with a chronic illness have to fight on a daily basis.
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