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)))

It’s Been A While… and I’m Struggling

I haven’t written anything in about a month, because I’ve struggled to find my words. I’m still having a hard time, so please hang in there with me and I will do my best.

The day before Thanksgiving I got a letter from my insurance telling me that my electric wheelchair had been declined. This was a huge blow to my progress and to my emotional well-being. I’d been going back and forth with my doctors office and the supply company trying to get that chair before the end of the year (out-of-pocket met). To get a denial after months of waiting, was a kick in the gut. So, now I have to appeal and start the whole process all over. I know that it is very typical, and I’m not alone, but it’s still devastating.

I also started my IV infusion treatments for the Rheumatoid Arthritis. Some things about it were expected, others were not. I knew I would be tired and sore, but I was still unprepared for just how tired and sore. I was told it would take five hours, when it actually took seven. I did not know I would have to have my blood pressure taken every half-hour, which is one of the most painful things ever for me. I left there with a huge bruise on my right arm and unable to even lift my left. I was grateful there were kind people there that are good at their jobs. They took good care of me, and understood when I had to get up to go to the restroom about ten times over the course of seven hours. I was pleasantly pleased to have a large screen TV and Netflix that kept my focus away from the pain in my back from the uncomfortable chair. Four full-length movies later, I was done and my husband took me home to rest. I was unable to sleep due to the pain, even though my whole body cried out for it. For days my arms hung at my side like bricks, I had to take off work and could barely lift a glass to drink water. I’m also starting to lose my hair. I knew this was a possibility. Its been a while since I’ve dealt with major hair loss, it’s one of the reasons I’ve had to chop my hair off (I used to have very long, gorgeous hair, now it’s a pixie cut). My last shower, the tub was covered in hair, not encouraging.

I’m still hopeful these treatments will relieve some of my pain, I just wish the process weren’t so destructive. I have another treatment in a few days and I am (obviously) not looking forward to it. The worst part is that it will be the day before Christmas Eve. Which means (based on the experience from a last time), I will be very little good to anyone over Christmas this year.

I have a tradition every Christmas (every since my first was born 14 years ago), to stay up and wrap gifts while watching A Christmas Story on Christmas Eve. Then arrange the gifts under the tree for the next morning. Over the years it has taken me longer and longer to complete this task, as my pain has gotten worse. But it’s something I enjoy doing, so I make it work (and I get the watch the movie several times, so that’s fun). I save up my spoons and use them all on that night. But not this year. I have to be practical, I just can’t do it. I’m going to wrap the gifts on Thursday, the day before my infusions and on Christmas Eve watch the movie while I lie on the couch, watching my husband set the gifts out. Maybe I’m wrong, it’s possible I’ll be okay. But I have to be realistic and when I look at the facts, I will be out of commission.

Another big stress in my life right now is work. I wish I didn’t have to work, but I do and that is that. I’m at a place now where the person I work for is actually very understanding and accommodating, but there are still outside factors that are pushing for that to change. It is upsetting and my anxiety level triples when I’m confronted with it.

Then there’s the weather! I live in a cold climate… for now. Where I live there are amazing schools, it really is the only thing that has kept us here. My son is Autistic and does much better when incorporated in a regular class, our school district is one of the best in the country for this. They’ve bent over backwards to accommodate his needs and make sure his education comes first. That being said, I am SO over living here!!! I need to be in a warmer climate. My body is screaming and begging me to move. I need to be in a place where there is little humidity and less extreme changes in weather. I used to live in Texas, but the allergens there were horrible for me (even though I love the Hill Country and would move back there in a second if it weren’t such a huge problem for me). So, we’ve talked about moving as soon as both kids have graduated high school, probably to New Mexico or Arizona. Our youngest is in 5th grade… there are times (like right now) that I feel like I’m never getting out of here!

I’m sorry this has been such a negative post! As most of my readers know, I always try to add at least a tiny little bit of positivity into everything I write. Right now I’m just in a lot of pain and having difficulty communicating any semblance of strength or inspiration. I will say this though, I did see the new Star Wars movie! It was really, really good. πŸ™‚

An Open Letter to President-Elect, Donald Trump (from a disabled citizen).

We’re on edge. There is really no way around it, people with disabilities are worried about their future and understandably so. This has nothing to do with partisanship, or who voted for who. We recognize that you have won the electoral college and will become our President in January. This is about so much more than that, this is a plea for recognition.

Our plight is two-fold, we need access to essential healthcare and protection from ableism.

Ableism has always been a problem, but has just recently started getting some attention. It encompasses an over-all belief that people with disabilities are not as “good” as an able-bodied person. In Nazi Germany, people with disabilities were killed just for being sick, but here in America it is much more subtle. From jobs that discriminate based on physical ability to harassment in a parking lot by the uninformed. We struggle to find a compromise between wanting to be well and wanting others to accept us the way we are.

Many people with disabilities are dealing with incurable illnesses, chronic conditions that they have no control over. Sometimes they end up in a wheelchair, sometimes they’re able to blend in to the fabric of society without notice (sometimes it’s a little bit of both). Invisible illnesses outnumber the visible. So many people deal with pain on a daily basis and find little to no compassion or understanding, even from friends and family. I am a person with an incurable illness, and I know there are millions of us (yes, millions) that are begging to be heard, but just don’t know what to say.

Most of us have spent years going to specialists, spending every dime we earn on doctors that try to help, but often can only prescribe medication to lessen the pain. We’ve tried physical therapy, holistic/eastern medicine, vitamins/supplements, and everything under the sun to find relief. But in the end, all we can do is live with what we’ve been given. Some people find medications that relieve enough of their pain to allow them to function on a day to day basis, others find that medical marijuana is the only option.

Lately there has been a “crack-down” on pain pills and the doctors that prescribe them. The risk being that many people that start on opioid medication eventually turn to heroin. Unfortunately, this witch hunt has turned on its heels and we’re now seeing that when patients are taken off of their opiates, that is when they turn to heroin. So with all the doctors being forced into cutting out their pain patients medications, there’s a huge influx of drug addiction. Not the other way around.

Another option for chronic pain patients (like myself) is medical marijuana. Several states have just legalized it, but there are still too many that it is considered a crime. Based on hundreds of studies and tons of research, it has been proven that marijuana/cannabis causes far less harm to the human body than most medications that are passed by federally funded corporations. People in pain need to have access to this natural medication, it is as simple as that.

“Obamacare” is a loaded topic, one that often divides even the closest of friends. Personally, there are aspects of the Affordable Care Act that I like, others that I don’t (at all). But the importance of making sure everyone has availability to medical treatment is the real issue and should never be overlooked just because of party affiliation. It is well known that in your speeches and campaign promises, you said you would “get rid of Obamacare”. First and foremost, we need to stop calling it Obamacare. That is a nickname and not official in any way shape or form, let’s call it what it is, The Affordable Care Act. Then, let’s make it actually affordable! Assign a team to the task of making it work for us, for everyone. It CAN be done.

No one should have to fear losing their health insurance just because someone else has taken a political office, but that is the reality many face right now. It is up to you now to make sure that does not happen.

Finally, I want to say this… please be a good person. This position is about so much more than just being a powerful person, it has to be about being the right person. You claim to be a person of faith, I want to believe that is true. I want to believe that you will stand up for those that cannot stand up for themselves. I (and many others) just have not seen that in you as of yet. It is time to be “presidential” and calm our fears. ***Be the good.***

Why do most people think everyone in a wheelchair is paralyzed?

During a recent conversation, it dawned on me that so many people in wheelchairs are capable of walking/standing, but are afraid to because of what other people will say. There has to be a way to bring awareness to this and stop the fear of persecution.

There is this concept among the able-bodied that anyone in a wheelchair is paralyzed, which is incredibly narrow minded. But think about it… have you seen someone in a store using the electric scooters and then stand to get an item off the shelf. How does that make you feel? When you see someone in a handicapped spot (even with a placard) walk into the store, do you automatically think they’re faking or using a tag that doesn’t belong to them? Think hard, we’ve ALL done it at one point in our lives.

The truth is that people with invisible illness often need assistance, but not necessarily every day. That person you see walking in to the grocery store could very well have been completely unable to walk the day before. That person using the scooter, most likely is having a bad pain day and wouldn’t be able to get their errands done if it weren’t for the help. Often reaching for something off a high shelf can be just as painful as walking around the store, so standing to get it is the better option.

Yet… we shy away from it because of all the judgemental stares. We will park without our tag, just to keep people from being cruel. Bullies come in many forms.

Then there are those of us that use a wheelchair on a regular basis, but are NOT paralyzed. We can stand if needed and sometimes sitting all day is just as bad for us as walking. We may have to get up just to stretch, but that’s not what people see, so we confine ourselves to the chair and pray for comfort. That fear is brutal!

Personally, I use a wheelchair any time I would have to stand our walk for a long time. If I don’t, my knees and hips give out and I’m considered a fall risk. So I have to use the scooters at stores, especially if I need several items. Otherwise my pain will be too much, even with my cane. My manual chair is not as helpful in stores, so the scooter is the best option. I’ve started using my cane to get in to the store and keep it with me on the scooter. This is no easy task! But it is a visual for people that I really do need mobility assistance.

What NEEDS to happen is an awakening of understanding to the struggle of people with invisible illness! We need to dispel the myth that everyone in a wheelchair is paralyzed. Yes, some are… but many are not! To judge someone without knowing their circumstances is plain and simple bullying. It is ableism and needs to stop (even among those with disabilities). It is not our place to judge.

(On a side-note. If you’re not disabled and take up a handicapped spot just because the lot is too full, or you just don’t feel like walking that far… stop it! Seriously, leave those spots for people with disabilities. Even if you’re just running in somewhere “really quick”, that’s not a good excuse. You never know when someone with a real need will drive up.)

So, don’t be afraid to be yourself. Stand to get what you need, stand to stretch, and most importantly stand up for your right to stand.

On a Personal Note

Most of my blog posts are about awareness for invisible illness, social acceptance of disabilities, food allergies, and so on. But it is also important for me (as a person) to just let everyone know how I’m doing and what is going on in my world. It is very possible that this is arrogant on my part, but it’s my blog and I can do what I want. πŸ™‚ Just kidding, kind of.

Well, I had a follow-up with my new Rheumatologist yesterday and sure enough, I do have Rheumatoid Arthritis (possibly Lupus as well). Some of the tests for Lupus were inconclusive, but everything for RA came back positive. They’ll be keeping an eye on the Lupus, but going forward with RA treatments. As for the Ehlers-Danlos diagnosis, I am still waiting for that to become official. She agrees that I “most likely” have it (I know I do, and I can tell she does too, but just won’t say it). She is insistent that I get genetic testing before she can move forward with an official diagnosis, even though I know that H-type does not show up on genetic testing and may not be covered by my insurance (we’re still working that out). Mine is a typical story though, one I’ve heard over and over on-line. People go years without a diagnosis, just to have every doctor shoot down what they KNOW to be true.

That’s one of the main reasons I’m doing what I’m doing! People just don’t know how devastating it can be to KNOW you have this debilitating disease and still have doctors question you. Just because we’ve sought help and answers on-line, does not mean we’re hypochondriacs. Just because we’ve spent countless hours researching symptoms, does not make us obsessive. Just because we’re relentless in our pursuit of a diagnosis, does not make us pushy patients. If we don’t stand up for ourselves, we eventually won’t be able to stand at all!

Ok, off that soap-box (for now). The other big thing that came out of my appointment was a prescription for mobility assistance. Yep, I’m getting a scooter! Not something I will use all the time. I have every intention of keeping attempting to walk for as long as my body will allow me to, but recent activities have been extremely difficult and kept me bed-ridden for days. So, when I told her about it, she agreed I needed that option. I have people coming to my house at some point to asses my mobility needs… yippee! Come see my messy house that I can’t clean because I’m sick! I have blankets I can throw over stuff, that will work, right? The other important thing is that my temporary handicapped placard is being upgraded to permanent. No more renewals and begging for a new one. No more waiting months for doctor visits and having him tell me that they really should just go to people that “really need them”, just to have him reluctantly write one for a couple months because I’m in extreme pain. Justification… I have to say, it is sweet.

Some other (smaller) things to come out of the appointment would be that she took me off of a med that was probably the cause of some severe dizziness. At one point this past week I actually had to be helped out of church because I almost fell over, fun times. My Sjogren’s isn’t getting any better, but we’re going to see how things go once my other treatment starts. I have to get a few immunizations before I can even begin the infusions for the RA. She also gave me steroid injections in my knees, which hurt like CRAZY! I’m hoping it’ll be worth it, because the next day it still feels like the needle is in there! Ugh.

I do have one other big “story” to tell, but I’m going to do so in a separate post. It was a pretty upsetting situation and I have had to collect my thoughts in a big way before posting about it. But no worries, you’ll get the full story very soon! For now, I wanted to give you a little insight into how things are going for me. Other than a very stressful situation (again I’ll post about that later), things are not too bad. Getting a diagnosis is always bitter-sweet. Knowing what’s wrong is always good, but finding out how they’re going to treat you can be daunting! Changes in medication, infusions, steroid injections, all kinds of “good times” ahead. I’ll make it through, I always have and I always will. For now, God bless and have a wonderful, pain-free day!

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.

The Harsh Truth About Not Being Sick Enough

When you live with invisible illness, you hear it all the time… “You’re too young to be so sick!” Well, how is sick supposed to look, and how old do I have to be before I can be sick?

The truth is, there’s no age limit on illness.

One of the biggest obstacles we face is getting people to take us seriously, which is truly insane. There is this misconception that if someone isn’t in a wheelchair, then they must not be all that ill. Or that the only real forms of diseases that exist are ones they’re familiar with. Conditions like cancer or… other forms of cancer.

Now, I am in no way saying cancer is not a horrible disease! I have had multiple family members pass away from different forms of cancer and friends that have been through it as well. I’m saying, there are MANY people who honestly think that if you’re sick, but it’s not cancer, then it’s no big deal. I have been told “well, at least it’s not cancer.” Very true, at least it’s not something treatable. It’s just something I’ve lived with my whole life, and will continue to live with forever. Sorry… getting back on track here.

How young is old enough? Would anyone go into a children’s hospital and go up to a child in a wheelchair then say “You are too young to be on so many medications! You just need to exercise, you’ll feel better soon”. No. Or if they did, everyone would throw a fit and kick them out. Because it’s a crappy thing to say to someone in pain, especially someone young who has a long road of frustration and recovery ahead of them. The only difference between them and us, is we have to constantly remind people we’re sick.

One day we may need to use a cane to walk, another we might do just fine without it. Then a flare hits and we’re lucky if we can get out of bed at all! People stare if we use the scooter at the grocery store, but the alternative is not getting food for our family and that is just not an option. Sometimes we don’t use the handicapped spot, even though we have the placard, just because we’re afraid of that note from condescending onlookers. Or if we do use the placard, we make sure everyone can tell just how much pain we’re in as we enter the store. Because, there’s a good chance that by the time we leave, we might not be able to walk on our own.

So, where does that leave us? In a no man’s land of tolerance? Desperately trying to gain approval from family, friends, doctors, specialists, teachers, co-workers, bosses, and anyone else who will listen. We just want to be heard! We want people to see us for who we are, not for what they think we should look like. It’s important to note that a few commercials on TV by prescription drug companies do not reflect the true nature of invisible illness! It’s excruciating pain, that does not go away with one daily pill… no matter what that pill is. There’s no miracle cure, no diet shake that works for everyone. Some people have had some pain reduction with things like this, but pain is not one size fits all and neither is treatment.

My point in all this is, please stop judging people based on age and outward appearance. You wouldn’t do it if they were in a wheelchair, don’t do it when they’re not. Period.