My Pain is Being a PILL!

***Fair Warning! I wrote this at 2:30 am… really hoping it makes sense!***

 

What happens when you think you took your medication, but might not have? Well, that’s a crazy question, because you’re meticulous about putting every pill in each days slot of the weekly medication holder, so why wouldn’t each pill be in each slot? Good question! One could deduce that a random fairy or gnome stopped by and noticed I had left Sunday mornings pill box open, so they decided to rummage through to find a……. ok I’m over making up stupid stuff. I messed up! Somehow I didn’t put my pain pill, my most important (well, to me) medication into the Sunday morning slot in my pill box. When did I notice this? Sunday evening when I could barely move the pain was so intense. I had chalked it up to the weather being bad, which does usually set me into flare mode, but this was different. By night I was shaky and my temp wouldn’t regulate, I knew that feeling… withdrawal. I hadn’t had my pain pill! What the holy hell! It was time (anyway) to get my pills set out for the next week, so I got started on that and took a pain pill (which I don’t usually do in the evening, but it wasn’t a “usual” kind of night). After making a 1000 percent sure every pill was in every slot, I took my evening pills and prayed that I could get to sleep at a decent hour. That was at 11 pm, it is now 2:30 am. Now, just to give you an idea how bad that is… I take multiple sleeping pills and supplements that are supposed to knock me out because of my terrible insomnia. Still awake.

People get on my case for how many prescriptions I take, but what they don’t understand is that those meds are the culmination of the research that companies have put into that which I am suffering from. Yes, there are side-effects! Yes, I take that risk upon myself when I take that drug. Yes, I would prefer to have anther viable alternative (but as of right now it is not legal in the state I live in). So, for now I will do what my doctor tells me to do and take my 15 prescription medications and 7 vitamins/supplements that I know based on research have helped some people in my situation. I will not reduce myself to snake-oil because it “cured” a bunch of people (which is a statistical impossibility). I can’t help being a realist, it’s just who I am. I look at things how they are, not how they could be. So, how things are for me… I need these medications to function on a daily basis. If I do not take them on a daily basis, I cannot function.

Like today.

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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!

Harassment, Hypocrisy, and Hope.

Anyone that has an invisible illness has been through some form of discrimination, it happens every day. Often times it comes from doctors that do not believe their symptoms, to notes on cars demanding they don’t use their parking placard (just because they’re not in a wheelchair). We have family and friends that are estranged because of broken promises or arguments about their illness. To the point that many people with unseen disabilities are afraid to even mention their conditions and live in unspoken pain on a daily basis. Personally, I have chosen to be vocal about my disabilities. This is not to  “create drama” or solicit sympathy. It’s because if people stay silent, nothing changes.

For twenty years I worked in the retail industry, many of those years were spent in management. Even though it was rough on me physically, I actually loved it. I was good at it! I’m a natural sales person and manager. But eventually my body couldn’t take it any more. I went to part-time for several years, but even that wasn’t good enough. One of the hardest parts was letting down the people I worked with. More than once, I had issues with fellow employees not quite understanding what I was going through. But how could they? At the time I only had a Fibromyalgia diagnosis, which (to be honest) should have been enough! Unfortunately, to many people it’s not. So, after a long time contemplating leaving a field I felt comfortable in, I ventured out into the world of job seeking.

It took significantly longer than I would have liked! So many jobs had requirements that I just did not meet, especially ones where I would have had to lift anything or be on my feet for a certain amount of time per day. A big part of why I was getting out of retail was to get away from all that. So I tried to focus my search on desk jobs, but I had very little experience there and it showed. Until one day I saw a listing for a chiropractors office. Perfect. How many hundreds of times had I been to the chiropractor?! I had a serious edge here! So I put in my resume and got called in for an interview. (side note- I don’t want to get into a debate on whether or not people with Fibromyalgia should go to a chiropractor. I am all for it and they’ve helped me tremendously. Each individual is different and the doctor will know if they can help them. Ok… moving on.)

I had gotten a lot of differing opinions on whether or not I should be upfront about my disabilities during the hiring process for any new job during my search. According to law, I do not have to disclose anything… at all. It is totally up to my discretion. There are some people that argued that I couldn’t tell them and I would be in trouble if I did. But I had hired enough people to know that wasn’t the case. They couldn’t ask, and I didn’t have to say, but if I felt the need to tell them I could. So I did. Maybe it was stupid, but in this case it was a good thing (especially now). I explained my limitations and told them upfront what I could/could not do. The big thing that they were looking for though, was someone with a lot of customer service experience, and I definitely had that! Add that to my personal knowledge of chiropractic, I felt very comfortable there. They understood my conditions and were willing to work with my accommodations. I promise all this is going somewhere very important.

The office I work in isn’t like a typical chiropractic clinic, where the doctor is the owner. It’s a franchise and there are multiple doctors that all work under the owner/owners. I’ve been here now for two years and for the most part really enjoyed it. Like any job, there have been ups and downs. But I love helping people and our structure here is wonderful! So, what could have possibly happened to prompt this super long explanation? Harassment in the workplace.

One of the doctors (yes, DC- Doctor of Chiropractic) has taken it upon himself to be the judge of my illness. Apparently I am a “drama queen” and shouldn’t work there if I can’t do simple tasks. Ok… I will relax a little and explain more rationally. Here we go.

There have been several times this particular doctor has brought me to tears because of cruel statements. I chose not to make a “big deal” out of it because I do suffer from chronic anxiety and depression, so I know it’s easy to set me off. That being said, this last time was over the line. I recently hurt my left shoulder (rotator cuff) and he knows all about it. There was a task that he had helped me with multiple times (putting an easel out side), but when I asked him to help me this time, he proceeded to joke that he couldn’t do it because of a “flare” (in obvious reference to my fibromyalgia). He said it with such sarcasm and directness, that the tears welled up right away. I went back to my desk and stewed. I couldn’t let this one go. I decided I had to ask him “I need to know what you meant by that, were you deliberately making fun of my illness? Because you have no idea what I go through every day.” Flashes of my latest blog past (written just days before) called “A Day in My Shoes” danced in my head and I stifled back and urge to say “If you could just spend an day feeling my pain, you wouldn’t say sh*t like that!” But I didn’t, I took the high ground. What did I get in return? A hand in my face and a refusal to talk to me because he was “tired of all the drama” and “if I couldn’t handle putting out a sign, I had no business being there”. I was then told to go home.

Instead of going home, I called one of the owners. Being professional and not wanting to make a scene in front of any patients that may walk into the clinic, I stepped outside to make the call. While on the phone, this doctor came out and continued to verbally abuse me and said “you need to grow up and stop being a tattle-tale, we have a patient”. My response was “Excuse me? You’re the one that should grow up, I am speaking to an employer from an employee about a work issue.” He huffed and went back inside. He came out later and berated me to get back inside again, causing another scene when a patient walked up, while I was attempting to avoid this very thing. Unfortunately, my employer did not condemn his behavior. She defended him. They offered to let me switch offices, so I didn’t have to work with him. So, for now that’s what I have done, but I’m not letting it go. I have every intention of pursuing this until he understands that what he did was not just about making me feel bad. This is about disability harassment. They knew my limitations from day one. He (as a doctor that has treated me on many occasions), knows what I can and can’t do. I cannot and will not let this slide.

So, why the title? Harassment, Hypocrisy, and Hope. The first one should be pretty obvious. Possibly even the second, but I’ll explain. He should know better, period. Maybe he was having a bad day, or maybe he was just over my “drama”, but nothing can excuse the hypocrisy of what he did. As a doctor, he made an oath to take care of people like me. Not to break us down. But there is hope! That this experience will serve as a tool to educate others. If what happened to me can prevent someone else from tearing down others with a disability, it was worth it. Just don’t let it happen again! Please, educate yourself and others… (for me).

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.

 

Why asking for help is SO hard!

I am mostly German. I really could just end the post there, but I will elaborate. I’m not 100% German, I am also Irish, Native American (Cherokee), a little bit of English/Scottish/etc. (your basic melting pot American). Am I saying that one’s temperament is only based on heritage and we don’t have control over our own actions because it’s ingrained into our DNA based of where we come from? NO! I’m saying, when they say German people tend to be stubborn, it is very true (at least in my family).

So I am stubborn, very stubborn. I am what some people would consider a “control freak”… I don’t know what those people are talking about, I am perfectly reasonable. I just like everything to be exactly how it should be, if the way it should be happens to be the way I do it, well that is a happy coincidence. Ok, ok, I get it. This is something I have tried to work on for a long time. It’s one thing that I had to finally give a little (well, a lot) on when it came to the cleanliness of my house when I had kids and got really sick.

I’m an organization freak! I would rather get gift certificates to The Container Store than to a clothing store any day! I shop at Office Depot for fun! I love to make charts and color code paperwork. Are you starting to get a mental picture? My work desk will always look better than my “home office” because there I actually have some semblance of control over it. So when anything is out of place, heaven help whoever messed with my system! Sorry about that, didn’t mean to let me crazy show (hehe). Getting back to my original point.

When someone (like myself) who likes things a certain way, finds themselves in a place where they can no longer do everything on their own, it can be extremely frustrating. Like those old cartoons where flames would come off of Yosemite Sam’s head and then rocket into the sky, frustrating. No one likes to lose control, especially when that person is used to having a lot of it to begin with. I’m not saying that being a “control freak” is always a good thing. There are some people that are horrible “controllers” and take advantage of people, this is not the kind of person I am talking about. What I am referring to are the kind of people that take initiative in all aspects of their life. They don’t tend to need anyone holding their hand for anything, or require permission to make decisions (although when in a serious relationship, they’ll often cooperate well with their partner). This is the kind of person I am talking about, and this is the kind of person I am… or was.

I haven’t really talked much about my family, and I’ll do that more on another post, but I want to brag on my husband a little bit here. He works a demanding job that keeps him very busy, and when he gets home all he wants to do is rest. Instead he cooks three, sometimes four meals. Because of my food allergies, our sons (Asperger’s) extreme food aversions, and our daughters food sensitivities, there are very few meals we can all eat (actually there are not really any full meals we can all eat, just bits and pieces). Sometimes we can get away with just two meals, often three, or we’ll get food from take-out (which is always another adventure in and of itself). On top of all that, he does the dishes and the laundry. He takes out the trash and mows the lawn. He is an amazing Dad too!!! What I hate about all this is that he has to do all this, I hate that I can’t. It hurts me to think about everything he does for me after working for 12 hours. Yet when I work 8 hours, I have to take a nap and can barely move for two days. The guilt is horrible! I know there are times he wishes I could do more, but knows I can’t. Thankfully our daughter is starting to get old enough to help out more, which she has (a bit). I always feel like such a hypocrite telling them to clean, while on the couch… not cleaning.

One of the worst moments for someone with chronic illness is admitting you’re not in control of your own body anymore. Up until that point, if you wanted to work out, take a nap, sleep in, work 10 hours, or whatever, it was up to you. Not anymore. No, now the pain is in control. It decides whether or not you go into work today. It decides what medication you start taking on a regular basis. It controls the amount of sleep you get (or don’t) every night. For those of us with “control issues”, that can be a huge burden. Depression sets in quickly, or worsens for anyone that was already dealing with it. We build up barricades to keep people out, because it’s easier than hurting more people (so the pain is controlling our friendships now too). We hide behind smiles and say “I’m fine” when asked how we’re feeling, because it’s so much easier than admitting the truth. That our pain has taken control of every aspect of our life, and asking for help is the one thing we can control. If we ask for help, then that’s it. We will have finally lost all control over our situation and there will be no way to gain it back. You think to yourself “I have accepted this burden unto myself and taking help from others will only push it onto them as well. What would be the point of that?” But know this… the pain is winning again. Don’t let the pain win.

We all need help, sometimes. This has been extremely difficult for me to admit! It’s taken so long to come to this conclusion, that I feel almost hypocritical just admitting it. My knees/hips have gotten so bad that I can barely walk without assistance (especially for long periods of time, I’m ok just going into work and out, etc). Also, website has taken significantly more money to get off the ground than I had originally anticipated (which is hard on me right now as I only work two days a week because of my conditions). I didn’t write this whole post just to ask for money… seriously! While writing it out I realized I needed to take my own advice and do what needed to be done. I’ve started a gofundme campaign to get my website off the ground and in the process help me get a mobility scooter/wheelchair. No pressure to donate! I just hope this is an inspiration to people out there that it is ok to ask for help. This is coming from someone who is just now asking, after YEARS of desperately needing it. Thank you!

donate to gofundme

Asking for help isn’t weakness! This isn’t about me. It isn’t about one specific condition. It isn’t even about money. This is about people needing other people. Reach out to someone and maybe instead of asking for something specific, say “I can’t do this on my own anymore. What do you think you can do to help me?” They might have some ideas. Maybe someone could bring you a meal once a week, or come over and clean, or even just watch a movie with you. Let people surprise you. I’m going to do this… it’s scary (I’ll admit), but I look forward to seeing the results. Please comment below if you do this and want to tell me about it! I hope everyone finds the help they need and deserve. ♥