Putting My Foot Down (is extremely painful).

*Warning- Venting Ahead*

Have you ever said “It can’t possibly get any worse than this.” then it gets worse, like way worse. That is how much pain I’m in. I seriously didn’t think it could get worse, but it can, and has.

Something is going on with my right foot. The top of my foot is in a constant state of flare. I made the image above to show the general pain area and how I feel. Just add an elephant stepping on all those knives, and we’re almost to the right pain level. Thankfully it isn’t in that state ALL the time, but it is anywhere between a 7 and 8 at any given time (10 for really bad flares). When you legitimately consider cutting your foot off, you know there is a problem.

My doctor thought it could have been a hairline fracture, so I had an x-ray… nothing. I’ve got an MRI scheduled, but I have to wait another week and a half since I got a new tattoo recently (apparently that is a big problem). So, for now, I just take very strong pain killers and hope for some relief.

I’ve also bought a “boot” to keep my foot as stable as possible. It helps, as much as anything can. I’m able to walk easier, but I’ve had to use my wheelchair more often than usual. I had to do something, I missed over a week of work and I could not afford to miss any more.

In other news- I got the results back from my genetics test and have an appointment tomorrow to go over them. Over the phone they did tell me that I definitely have the gene associated with EDS, so getting that (official) diagnosis will be a huge step forward for my treatment.

I’m also meeting with a Social Security Disability Attorney to go over my options for filing for disability. I should have done it years ago, but I was just too determined to keep working and not allow my conditions/pain to control my life. Well, I’m to the point where work is a huge trigger for my pain. I’m sure I’ll do a whole post just about the SSDI when I know more about my case.

So, that’s what’s going on in my world right now.

I hope everyone is having a wonderful, pain-free day! (((gentle hugs)))

Advertisements

We may not all be able to march, but we can rally!

As a woman, I participated in the “Day Without a Woman” yesterday (March 8th). I wore red, I took off work, I didn’t go shopping, and I went to lunch at a female owned small business (Mexican). These are things I’m physically capable of doing. I also plan on attending the March for Science in my home state (with the assistance of a friend). But it makes me think… what about us?

Disability Rights have finally started inching its way in to the conversation (about time). My hope is that this trend will continue, and grow in “popularity”.

I hate the word “popular”, because it sounds like civil rights are just cliques that fight for attention. But in reality, civil rights should unite us! They give us a common goal, a focus for change. We are humans that just want to live. That is all, we want to be free to live.

Disabled citizens are especially worried about that freedom.

Parents of children with disabilities are worried for their kid’s future, and rightly so. With the new voucher system, students with disabilities are being pushed aside and will suffer from lack of funding. Even healthy kids are in danger of losing specialty classes that are vital to a well-rounded education. We have a Education Secretary that knows nothing about public schools, and their benefits. But this is not about a single person, this is a much bigger problem, and has to be addressed.

For people like me that rely on insurance on a daily basis, I cannot begin to express my fear for the future. No, the ACA was not perfect. But our new healthcare plan is riddled with flaws! It only benefits people that don’t need treatment on a regular basis. Annual check-ups, the random flu/cold, these are things easily covered. But when you go to the doctor (or multiple different doctors), you might as well forget about saving for anything.

So, what can we do? Form a rally or march of our own? I know I wouldn’t be able to fly out to Washington and march (well, roll) up to the capitol building with a list of grievances. But I think there is something we can do.

If everyone with a disability (of any kind), said “We’re tired of being treated like a burden, we’re tired of Ableism” and spent one whole day doing something to get their attention. It could be sending pictures to our local politicians, it could be wearing the color of our individual condition, or some other form of solidarity.

For those of us that still work, it can be difficult to take a day off (especially for something like this), because we end up using our sick days up pretty quick. But if you tend to hide your disability, this would be the day to make it known. Because of HIIPA, we are under no obligation to do this. So, it could make a big impact. Take video of your “coming out” and post it on-line. People need to start paying attention to the contributions of people with disabilities! We’re not a burden to society, we are society!

July is Disability Pride Month and July 12th is Disability Awareness Day, so I feel this would be the perfect day to rally. If anyone has suggestions on how to make this successful, please comment below! I really hope this gains support. Ableism has become the norm, we need to make a statement that says very clearly “We’re here, and we’re not backing down”.

I’ve made a Facebook page specifically for the July 12th, Disabilities Day.  I hope you take the time to comment or message me with suggestions (note- hate speech will be deleted). Thank you!

State of the Body

This is NOT a “political” post… really! It is going to seem like it, and I’m sure there will be people that disagree with my views. This is actually a “call to arms” post! These are things that need to be said and often don’t because people are afraid of political backlash. This is all about being informed and making the best choice for our future.

The title of this post is “State of the Body” because we need to step back and really look at how people with disabilities are treated in the United States. There’s not going to be any change for the better, if we don’t make the conscious decision to set aside our party affiliations and vote for people that will fight for our rights.

This is NOT just about who will be president!

Every office, from Governor to City Council should have a stance on disability rights. It is tasked to us to be aware of their policies! If we are not informed, we will never see change. We will never find the help we need.

Look up your local candidates, see what their platforms are… then search beyond that. If you’re questioning what a particular candidates stance on disability rights is, call their campaign. We don’t pick a doctor based on how they look, we choose based on who will help us the most. So, don’t choose a leader based on whether they’re Republican or Democrat, when a little digging may show you the other will do more for you.

As far as the presidential race is concerned, I will not tell you which candidate to vote for. That is not my place. I would urge you to please do your research! Don’t be afraid to vote for who you believe in and the one that will do the most for your rights.

People with disabilities have been ignored for far too long. I truly hope that the next round of voting will enact some real changes and bring the issues we face into the light.

What should you look for?

  1. Do they even have any policies set aside for people with disabilities?
  2. Do they plan to restrict important medication for people with disabilities?
  3. Are any of their policies going to inhibit people with disabilities?
  4. What plans do they have (if any) to improve the lives of people with disabilities?

There are very likely more questions that can be asked/answered, but these (I have found) are key to making the best choice in a politician.

I honestly hope that this has been helpful. I don’t want to create division, or spark debates. This is a good rule for anyone with something they feel very strongly about.

So please, be informed and vote.

What does “Ableism” mean to me?

Ableism (officially means)- a set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities. But what qualifies anyone to asses these “practices and beliefs”? How has it that ableism has gone unchecked for SO long? This is more than just discrimination against disabled individuals, this is about able-bodied people going out of their way to find fault in our disabilities.

It may not seem like it, but one of the worst forms of ableism is unwanted/unsolicited help. “Help” is a very vague term; sometimes it can mean physically helping someone with a difficult task, this is not the kind of help I am talking about (although there are cases it can be the case). I’m talking specifically about the times that able-bodied people suggest they are helping someone with a disability by giving them “advice” (whether we want it or not).

Let me make this VERY clear… not ONE case of invisible illness is exactly the same. NOT ONE! So, we don’t care if you know someone else with our condition that magically got better (insert enormous eye-roll here), or if you read an article one time that said if we did……. all our pain would disappear. You’re not helping! It’s ableism, whether you are meaning to or not. You’re assuming to understand how we feel, but you don’t, you can’t.

So, how does this factor in to the official definition? Perfectly, that’s how. Unwanted/unsolicited advice is both a belief and practice (on the part of the advisor), because they’re assuming the disabled person does not have the ability to properly care for themselves. When in fact, most people with disabilities are significantly more versed in their illness than most doctors (not necessarily specialists, but it can feel that way sometimes). When anyone without disabilities suggests that they “understand” what we’re going through and offer advice for potential cures, it is like a knife in the back! Unless you are my doctor… I don’t want to hear it!

advice

Another significant issue is people asking if we’re feeling better. No, we’re not and that’s a horrible question! Better than what? Better than when? We’re used to the common “How are you feeling?” it sucks and we have to lie every time, but at least we have an answer for it. Some of us completely lie and say “I’m ok” or “Good”, others say “Fine” and leave it at that. Personally I’ve found that saying “I’m here” is a good way to stop the conversation, without making anyone too uncomfortable. But when someone asks “Are you feeling any better?” I cringe! It’s ableism to assume that I will get better at all. “But don’t you WANT to get better?” I do, of course! But I have an incurable disease… this is not up for dispute. Think before you speak.

If we want to complain, we damn well are allowed to complain! If any able-bodied individuals out there think differently, see ya. Does this mean no one else can complain about anything else, of course not! But do NOT compare your headache to my chronic migraines. Never compare your back pain to my dislocated ribs and curved spine. Don’t say “I know how you feel” until you’ve been diagnosed with something comparable. Period.

I’ve been a little harsh today, more so than usual, but for good reason. The disabled community deserves to be heard and have our rights upheld! Let’s put an end to ableism!!!

stop2

 

Is Giving In… Giving Up?

For months now, I have been on a steady decline and that is saying something, because I was already not in very good shape. I’m not saying this to elicit sympathy or prayers, it is simply a statement of truth.

I’m going to go on a little detour from my main post topic for one second to address my last sentence there, because as soon as I wrote it I realized this has to be said. Please let people talk about their health without feeling like you HAVE to comment on how sorry you feel for them or that you will keep them in your prayers. Now, I am a Christian (see my post called “Faith in the Midst of Pain“), but there are times I feel like I can’t vent about how I feel because I know it will just be taken as a solicitation for sympathy. It’s not! Pray for me, by all means. But when a friend with invisible illness is talking to you about their symptoms, it means they trust you… a lot. Don’t break that trust, don’t make them feel like what they’re saying should be pitied. Ok, back to what I came here to say.

Is giving up, giving in? The short answer is no, but (as we all know) there is no such thing as a short answer (well maybe 2+2). My point is that, there is almost always more to the situation than just saying “Don’t give up, no matter what!”. Here’s an example…

When I got married just over 15 years ago, my husband and I were living in San Antonio, TX. We loved it there, and only moved because of job opportunities and family. If it were just for location alone, we would still be in Texas. Anyway, we honeymooned in the Hill Country and it was beautiful! Not far from where we were staying there is this huge rock, the size of a giant hill (but a rock). It’s a big thing to climb this rock, there were hundreds of people there (like all the time) walking, crawling, and climbing up this thing. Well, up until this point I still didn’t know I was sick. All I knew was that I had back problems, headaches, and that I most likely had carpel tunnel (the only explanation my doctor could give me for my wrist pain). I also knew I had asthmatic problems, but had never been diagnosed and was therefore never given an inhaler. So climbing this giant rock was NOT high on my list of things I wanted to do on my honeymoon. But my new husband really wanted to do it, and he thought it would be a romantic thing to do together. It. Was. Not. Less than half way up I started hurting. He decided to try different motivational techniques, like cheering me on and even negative reinforcement (I put a stop to that one right away). Eventually I made it to the top, but it took several hours. I was in so much pain by that time I had learned something about myself… it doesn’t matter how much someone is trying to motivate me, I can only do what I can physically do. Period. I should have given up. I should have stopped and gone back down as soon as I felt the pain searing through my body. But I didn’t, I allowed myself to be pushed and because of that I had to be (practically) carried down the rock and back to the hotel. I spent the rest of the honeymoon miserable. I don’t blame my husband! He was only doing what he thought was the right thing to do, neither of us knew about my chronic conditions. If we did, we would never have even attempted to make the climb.

So now I’m faced with another rock to climb… mobility. My legs are losing the battle and even though I can walk, if I have to walk for long periods of time, I’m laid out for at least a day (often more). I know that I will have to have a serious conversation about this with my doctor at my next appointment, but I have other people pushing back. I get everything from “You’re too young for a wheelchair!” to “I’m just going to believe that you’re going to get better!”. These are not helpful. Of course I want to “get better”, but reality dictates I look at facts. The fact is that things are going to continue to get worse. I am not just giving up! I will take my vitamins, I will do my physical therapy, I will be an advocate for my disability rights. Getting into a wheelchair is not giving up on myself. It may be giving in, but not giving up.