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. 🙂 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!

A Day in My Shoes

How many times have you said “If they could spend one day in my shoes (one minute even) they might understand how I feel”? I’m guilty of saying this as well, but the more I really thought about what those words meant, I’ve cut it out of my vocabulary. Here’s why.

As someone with multiple invisible illnesses, I live every day in constant chronic pain. I manage that pain as best as I can, but it’s always there. I would never wish this on anyone… not even for a minute. It’s easy to think differently when your doctor is staring blankly at you while you are trying desperately to explain your symptoms (and all they do it add on another prescription). It’s easy to think that way when you see a post from a (well meaning) friend or family member trying to convince you that their product will cure everything. It’s especially easy to think that way when someone judges you for using your disability accommodations (like parking placard, benefits, mobility help, etc.), where you’re left feeling broken and alone. Why shouldn’t they feel your pain?! Why shouldn’t they know just how horrible they’re making us feel with their words? Because we have to be better.

Think about it. How can we advocate for our illness if we’re willing to allow anyone else to feel that same pain? For me to say “I want you to know what this feels like” is like me saying “I honestly think that you should be put in an iron maiden that’s set on fire, that might give you some indication of how much pain I deal with on a daily basis”. This might seem like an over-exaggeration to some, but for anyone that’s been through a flare… it’s completely accurate. We have to be better than that.

Let me put it another way.

As a parent, I strive to teach my children the difference between right and wrong. I honestly believe that most parents want the same for their kids. Not all people succeed in this goal, but it is an inherent desire we all have. Unfortunately there are some people out there that choose violence as the answer to every problem, and therefore instill that mentality onto their children. I hope and pray my kids never see that in me. This is one reason why I would never want them to hear me say that I hope someone else could feel my pain. They know what I go through every day, they’re not blind to my pain. So to curse someone else with the same infliction, would be as violent an act as any they could see on the news. Is it starting to sink in?

Education is key! Let’s annoy people with awareness posts to the point that they have no other option than to ask what’s wrong. Let’s make hand-outs for people that explain your condition, so when someone judges you for using a prescribed medical device or doctor issued handicapped placard, they learn something new. Let’s make our voices heard! Just because our illness is invisible, doesn’t mean we are! I never want you to feel this pain, now take the time to learn about mine.

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.

There’s Simply No Excuse.

We’ve all seen them, those inspirational pictures and stories of people who have endured great odds to become successful. People with disabilities, but still managed to overcome and win a sport or defy expectations. These are often (ok, pretty much always) followed up with the phrase “What’s your excuse?” and I’m here to say, “Who are you to ask?”.

Some people may find motivation in that medium, but most of the disabled community find it demeaning. Think about it. Unless you’re looking in a mirror, you have NO idea what that person goes through every single day. There are some amazing people out there with disabilities, that do incredible things with the hand that has been dealt them, but to judge others lives based on what how those people live is not doing anyone justice. Here are a few examples.

Morgan Freeman has Fibromyalgia. Many people do not know this, but it’s true. He has said that after a car accident, tendons in his arm were so badly damaged that he could barely move and the Fibromyalgia developed as a result. So, how can he still work and make insanely incredible movies when other people with the same condition complain about even working? Because no two people are the same! He has different symptoms and I know for a fact he uses his pain in his performance. He also smokes a lot of medical weed, he has made that very clear in interviews. It’s his main medication and it works.

Rick Allen (the drummer from Def Leppard, you know… he’s only got one arm). Seriously, I cannot tell you how many times I have heard this one come up! “Well, if Rick Allen can do it, I bet you can too.” Yeah, well I am not Rick Allen. He’s a unbelievable talent and how he does is frankly beyond me, but saying that anybody can do anything just because someone can drum with one arm, is not motivating.

Paralympians. I have SO much respect for all the athletes at the Olympics! I cannot even imagine all the hard work that goes in to getting there. Especially for those competing in the Paralympics. Each and every one has obviously endured some amazing journey to get where they are, and there’s no doubt in my mind that most of them deal with pain on a daily basis (as do many of the athletes in the Olympics as well). That being said, each and every one of those Olympians/Paralympians are unique! Their conditions are constantly monitored by doctors and specialists. To suggest that another’s pain is less valid because someone with the same condition can win a gold medal, is degrading and disrespectful.

Elderly individuals that stay fit. I love to see senior citizens doing yoga, jogging, and lifting weights. I think we all do. It means they’ve either taken good care of themselves throughout their whole life, or they’re doing everything they can to add years onto their life now. This one means a lot to me. As many of my readers know, I recently lost my Grandmother. It was a difficult loss because we were at odds for many years and only recently became close. I miss her dearly and would give anything to see her up and running or doing yoga. I just cannot stand the images I see that say “85 years old… what’s your excuse?” and have an older gentleman with bulging muscles. Well, I’m 39 and I am now using my Grandma’s old walker. This is not a choice we make. I am not sitting around, eating bonbons, and just feeling sorry for myself. If I could do what these amazing people are doing, I would (maybe not the bulging muscles).

There are plenty of other examples I could add here, but honestly I will just get overly riled up and that won’t benefit anyone. This is an emotional topic for those of us with invisible illness, because we deal with a constant barrage of “motivational” images on a daily basis (especially on social media). We’re going to see it a lot more during the Paralympics, so I wanted to get this out there and make sure people really understood the true damage they cause. Now, there is no excuse for posting it.

 

The Positivity Police

“Just stay positive!”

“No one wants to be around a Debbie Downer.”

“When you have a bright outlook, nothing can look too dark.”

Shut. Up.

I know that being negative all the time is no fun for anyone, especially our friends and family. But there are some people who take it upon themselves to act as our positivity coaches, the one that’s going to pull us out of our “funk” (no matter the cost). Then it turns into a boot camp, instead of a counseling session. Every time they speak, the condescension oozes off of them like Slimer from the Ghostbusters. Guess what, I don’t need it! Surprisingly enough, I am a very positive person. If I were not, I wouldn’t be here.

Let me explain something very important (this is mainly for the able bodied people readers, but anyone dealing with chronic pain make sure to pass this along).

If we complained HALF as much as we felt like it, we would never stop! It would be 24 hours a day, 7 days a week. So, when we mention in any small fashion that we’re in pain, we are in extreme pain. Something different is going on that is over and above our typical pain, and it’s so bad that the barrier has been breached. It is to the point that something has to be said. If we don’t say it, we run the risk of everyone saying “Well, why didn’t you say something?!” when we end up in the hospital, can’t work the next day, and so on. So, do NOT blow it off as just another bout of negativity or complaining. It is serious, always!

To all the positivity police out there… stop it, please. I’m not saying to never pass on a positive message, we appreciate it! I’m saying, don’t expect us to never be negative about our condition. It is going to happen, and we have to be able to feel that. We are entitled to our feelings, as you are entitled to yours! My pain has forced me to see the world in a whole new light, and (even though I 100% believe in being positive) I just don’t need anyone else constantly telling me the best way to stay positive. Now, I’m sure I sound like a huge downer, I swear I’m not! I’m upbeat and tend to be a very strong person (I even pass along some of those positive messages on social media sometimes). My point in all this is when someone has chronic pain, the last thing they need is other people forcing a bunch of anti-negative rhetoric at them. Be an ally for people with invisible illness! Be there for them, don’t treat them like their pain is anything less than what it really is… horrible.

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.

Digging up the Past

Thanks to Facebook, I was reminded today that it’s been six years now since I was released from a ten day stay in the hospital. Now that might not seem like a big deal for someone with as many conditions as I have, but this particular hospital stay was life changing (and not at the same time). I haven’t talked about it much, but maybe it’s time I did.

In other blog posts I’ve mentioned my close call with suicide, but just in case this is your first time reading my posts, I’ll give you the cliff-notes version. I had it all planned out, car accident (faulty brakes) and no one else hurt, but in the end I couldn’t go through with it. My kids were too important to me, I couldn’t put them through that. But that’s not why I was in the hospital. I went to an out-patient rehab facility for that one. That was over a year before my ten day hospital stay.

Six years ago (and a few months) I started seeing a new pain management doctor. He was unimpressed with how ineffective my treatment had been up to that point, especially with regards to my medications. Specifically after my “attempted” suicide (personally I don’t consider it attempted, but that’s what they kept calling it).  He wanted to completely redo my meds, but that would require drastic measures. I had become so dependent on my prescriptions, I would have to be hospitalized and weened off of them. Just weening off one at a time would take three months per med, WAY too long! But there was a catch… I had been suicidal. Legally, they had to put me on suicide watch. So, I went to the “Psych Ward” to detox from prescription medications.

Now I am not a prude, but I am also a “good girl”. I have never smoked (gross, seriously), drank alcohol (see my post “The Drinking Game”), or done any illegal drugs of any kind (I’m not opposed to medical marijuana, it’s just not legal here yet). So, this felt like an incredible low in my life! I was on 24 hour watch. I had to sleep with the door open, an aid had to accompany me when I took a shower (really), and that was just the humiliating stuff. The worst part was the actual detoxing!

There was a reason I was there, which I quickly began to understand. After only a day of reducing my meds, I had a constant migraine. After a few days, I was extremely sick. It was was nice to have other people there that were going through very similar problems. We had group therapy sessions, but I was often in too much pain to really concentrate. It was still nice though. Eventually I was completely off all my old medications, and I was miserable. My husband came to see me as often as he could, and even brought the kids when I felt strong enough. I’m a very good faker, I wanted to see my kids as much as possible. It made a huge difference!

After about a week, they started introducing the new medications he was putting me on and life began to get back to “normal”. My numbers were looking good and they decided I could be released in a few days if I kept doing so well. I had even made a few friends, I was getting used to sleeping in a hospital bed (to the point I’ve had trouble sleeping in a regular bed since then and had to get an adjustable bed, weird I know), and my spirits were climbing. Things that were not getting better… my headache, my appetite, and my general need for privacy.

I have never spent so much time with strangers in my life! I do not recommend it. I may seem like an outgoing person, but I’m actually quite shy (until you get to know me). I’m the kind of person that will end up being your best friend for life, but you’re going to have to be the one to start the conversation… because I’m not going to do it. I am a social armadillo, I see people and roll up into my shell like “don’t mind me, I’m just a rock”. But once you get to know me, I swear I’m a nice person (under my shell). So to be thrown into a situation where I have to interact with that many people, for ten whole days was exhausting! The group therapy sessions weren’t so bad, because I could just sit quietly unless I had something to say. But unless I wanted to just sit in my room all day and stare at a wall, I would have to go out into the common room and interact with people. Ugh. It was intentional, I know that, but I was very happy to be going home!

I finally got the okay to go home and everything really hit me. What if I have a relapse? What if these new meds turn on me and stop working? What if this? What if that? I started having a panic attack, but I didn’t want to draw attention to myself. the last thing I wanted was to stay there another day! This had happened to me before, several times. I finally got myself calmed down. I knew that there was no point in playing the “what if” game, and the best medicine for me right now was holding my kids. So, I went home, gratefully.

Less than a year later, my insurance changed and one of the medications that I was put on (that was actually really helping control my pain) was no longer covered. I had to immediately stop taking it. I did everything I could to get even enough to ween off of it, but there was nothing I could do. If I had known, I would have been weening down off of it for a month, but instead I had to go “cold turkey” I got extremely ill. I also lost the doctor that helped me in the insurance change. So all the progress I made in the hospital went down the drain within a year. It was detrimental to my health. So, I look back at my time in the hospital with mixed feelings. There were some very positive moments, and some that I wish I could forget. There are some medications that I started taking there that I’m still on that are still helping me, so that’s good. But all-in-all, because of a change in insurance, I’m back where I started.