Sunday, February 28, 2016

Why “Just Do Yoga” Won’t Work For Me


    Being chronically ill brings with it the inevitable burden of “advice” givers. Those who mean well but don’t truly understand the nature of being chronically ill. The ones who say “Aunt Cecelia went gluten free and she’s fine now” or “Gary down the street started yoga and he can walk again”. Individuals who shower you with the success stories of acquaintances who changed one habit and are now, miraculously, cured. And you could be too if you’d just try!”
    “If you’d just try.” In their minds, the fact that I am sick means I am not trying hard enough to get better. What they are overlooking is the fact that I will never get better. My illness precludes it. It is incurable. It is degenerative. And it will progressively get worse. So nothing I do will make it better. And that’s OK. I can accept it. It’s just really hard when the people around you don’t get it and insist you’re not doing enough. That you’re not doing sick right. So let me point out a few things…
    First: My disease is autoimmune. That means my immune system randomly decides to attack ME. It’s not something I can control nor is it something I can predict. Even if I sit quietly all day long, my immune system could decide to mount an attack the next day and I will be in pain. So telling me to get more rest or not to do things isn’t helpful. Yes, I need more rest but that’s because being in pain all the time is tiring. Not because it will help me get better.
    Next: Because my disease is autoimmune, there is no diet that will cure it. Yes, there are people out there for whom going gluten free has brought about a reversal of symptoms. But there is also a condition out there in which the body is allergic to gluten. In that case, not eating gluten will basically cure you. It’s not a true cure as the disease is always there but that person will have no symptoms as long as they stay away from gluten. But in my case, the best I can hope for is to reduce inflammation through diet. And that doesn’t always help. If my disease is going to flare up, it's going to flare up and I will swell. And hurt.
    And finally: Because my disease is based on inflammation and exercise causes the muscles to swell, exercise can actually trigger flare ups. Now that’s not to say staying active isn’t recommended and even helpful, but it will not make the disease go away. Making my body as strong and healthy as possible can slow the progression of my disease because it will take longer to wear away at my muscles and ligaments. But, not having flare ups is the main way to keep this disease where it is, so pushing myself too hard can be just as bad for me as doing nothing. It’s about knowing your personal limitations and not exceeding them. That way, the disease stays right where it is for as long as possible instead of eating you alive.
    Let me throw in one last note about yoga. Do you realize the amount of strength it takes even as a beginner to start yoga? Yeah! Don’t suggest that as a way for us to heal please. Our bodies are far from normal and that includes strength. Yes, there are those of us that can do it, but there are more of us whose muscles are under attack and for whom it would do more harm than good. you don’t want that for us and we certainly don’t want MORE pain!
    So just remember, we are the experts in our particular disease. (In my case, most of my friends can’t even spell what I have!) If you are one of the ones out there who knows someone with a chronic illness, pay attention to the word chronic. It really does mean chronic. As in long lasting. And if any of these things could cure it, we’d know by now. Believe me-we’d know!

Well, at least I’d be eating that snail burger if it would cure me...

Thursday, February 25, 2016

The Mental Monster


    So here I am sitting in my living room in Western NY watching the sky decide if it wants to rain or snow. I am feeling my head decide if it wants to go full on meltdown or let me off with a warning. And I’m watching my favorite “Dumb Criminals” on TV. Again. And that’s the problem.
    I don’t consider myself depressed, yet I am. I know I am. It’s hard not to be when you fight an invisible illness and pain day after day and you know it will never go away. As much as we learn to accept the fact that our diseases are incurable-and I have-it’s still hard when you get down to the brass tacks of the matter. The days, hours, and minutes-even the seconds-they all add up to wear you down. And that’s on top of the indescribable fatigue that already exists within the disease itself.
    And that’s the point of this post. Because today, my Mental Monster is sitting in the room with me. I’m bored. I’m fidgety. I’m tired. And I’m sore. And I have nowhere to go and nothing to do. I don’t have a job because I can’t work anymore. I already did my exercises and my back needs to rest. I have no car so no “sightseeing”. And the majority of the friends I have-which is few-are at work. They cannot just drop everything to run over here and entertain me. And I don’t expect them to. Because if I did, they’d get sick of this really quickly!
    So what do I do. OK, I write. But it doesn’t always work out that my mind lets me write. And I am a movie junkie. But I can’t keep running up pay per views and a lot of the time, the same movies are running for weeks. I make jewelry, but that requires stamina I don’t have right now and my back just isn’t up to it yet either. And I go on Facebook. But let’s face it, that’s not “real”.
    It’s not that I don’t enjoy the conversations I have with my friends on Facebook. I really do. And I get to talk to my sister whom I still can’t figure out a way to go visit. (It’s been way too long and she’s not even that far away!) But the conversations are all in my head because I have to read them. I have to give them inflections and accents and sarcasm and wit. (And I can’t hug y’all out in FB land either!) So as much as everyone makes me laugh and I look forward to the dancing spiders and awkward cats, I’m still here alone.
    And that’s when The Monster shows up. And I never know quite what to do with him. I’ve told my family. They all have their own suggestions too but I don’t really think they understand. My husband tries but he thinks I should be used to it. (I know he wants to fix it for me and is frustrated he can’t) My mom says to call her and we can go for a drive or play cards at her house. But I’m not always showered or dressed or able to do so. My boys suggest music. Which I do love but and can really help change my mood, but can also remind me that right now, I can’t risk my back by dancing. So I sit.
    But even sitting in the room with my Monster staring at me, there is one thing I make sure to keep doing. I think. I think of things I could try to do. From going on a walk to doing laundry, I keep thinking of ideas. Why? If I don’t, I feed the monster my inactivity and my dejection and he grows. And he gets harder to beat the next time. But more importantly, something might actually click. Two days ago, it hit me during such a time of thinking that I would absolutely love to sit on my back deck in the sun in February and have a cup of coffee. (It was really warm for February here.) So I did. And it was Amazing! I even had enough energy to hang a birdfeeder and fix the windchimes. And guess what? When I came back in...


Thursday, February 11, 2016

I Am Not An Addict


    I am not an addict. Those that know me may think that statement is a no-brainer. I’ve never even tried cigarettes. (OK once! But they were menthols and really really bad!) I am talking about harder drug and those have never crossed my lips. Well… Now days, that depends upon your definition. You, and the FDA. Because now days, pain medication is the addiction of ‘choice’. Like orange is the new black right? Or is it?
    Are you confused yet? Cuz I sure am. And I take pain meds so I, for one, should not be. But I am. And here’s why: the FDA has decided that doctors are not smart enough to prescribe pain meds correctly, so they have decided they need to put rules in place. “Guidelines” as they call them. Dosing recommendations as well as recommendations on how often patients need to be seen in order to obtain refills. All in an effort to curb addiction to Rx pain meds. But for people like me, these guidelines are just adding to our pain.
    To start with and so you know where I am coming from, here’s my rundown:I have back issues. ( And you say so does everyone.) Well, in July 2014, I fractured my spine at L-2. In December 2015, I fractured my spine again at T-10. I have arthritis in my tailbone due to fracturing that falling out of a tree as a child. That now makes sitting really painful. In an attempt to strengthen my back, I started PT. That required an MRI to make sure my back could handle it. The MRI showed narrowing around my spinal cord and bone spurs at C-6. (I just thought I was sleeping wrong all these years) And my spine is osteoporotic. Meaning the bones are now fragile. Add to that being 6’2” tall in 2014 and 6’0” tall now and something is compressed! So yeah-I have back issues.
     Now don’t get me wrong, I KNOW there are people out there who abuse their pain meds and develop addictions. I KNOW there are people out there who have overdosed on pain meds. I lost a dear friend to an accidental overdose of her pain meds. And she was a nurse! But the majority of people out there on pain meds actually need them. Believe me. I cannot just call up my doctor, who has known me since his residency (my high school days), and get a script for Vicodin or Percocet. It doesn’t happen. I have been in pain for 20 years and was never given more than NSAIDs. But since my first back fracture, I have always had some on hand to help me through recovery and exercises.  Personally, I try not to take it. I try heat, stretches, my husband’s massages, or lying with my feet up first. But anyone with pain knows that that does not always work. And there are days you just move wrong. I can take up to two pills 4 times per day. That kills my pain and I can exercise and still deal with daily activities. Like showering. I like showering.
    Now, imagine living on that level of medication. I don’t. I do not HAVE to. YET. And I pray I never HAVE to. My online friends know that and they understand why. But I know several of them HAVE to live like that. And it sucks! So where a bottle of Vicodin lasts me months, it lasts them one single month. If that. Some are on more than one pain med. And even that does not always work. Imagine that. All our technology and smarts and so many still live in incredible pain.
    Next, imagine having to prove your pain exists. I just got my MRI results yesterday. So I never knew I had bone spurs in my neck. But it was what was said to me that was jarring. She said Now you have proof of all that pain. It’s not just in your head! Wait, what? There was a question when I was in your office crying back in August? I let you give me 22 shots in my head, neck and shoulders and there was a question about my pain? Oh My-----  And some people never get the proof that I just got. So there is always a question. Most docs are good about it. And there are ways of diagnosing pain without the purely visible scans like mine. But what’s going to happen to those people now?
    You see it’s already happening. People who have been well managed for years on a certain med or dosage have had their dosage reduced or their med changed due to the new guidelines. And many are already in  more pain! Some have run out of medication while waiting to be seen before getting a refill. And don’t ask what happens to pain patients who go to the ED. Talk about judgmentalism
    All of this doesn’t even address those who cannot PROVE their condition. Tell me how that’s even appropriate. And these are all people who have had the same doctor dealing with the same condition for years. My statements aren’t addressing the patient that has multiple doctors writing scripts for the same or multiple pain meds; the biggest red flag of a true addict. I consult with all my docs about my pain but only one writes the scripts for it, and they all receive all my test results so they all know every diagnosis and condition I have. That’s how we keep it real. And trust me, the pain is real!
    So we are back to the beginning. With me telling you I am not an addict. Even lying on the floor popping Vicodin every 6 hours when my back is toast, I am not an addict. I wouldn’t take it if I didn’t need it. I wouldn’t take any of my 7 meds if I didn’t need them. And everyone in my pain group is the same. If we could function without these meds, even in some sort of pain, we would. In fact, we do. Because none of us takes the full dose if we don’t have to. And if we do, it’s because it doesn’t end our pain. But we keep going anyway. We are just that strong.


Saturday, February 6, 2016

I Have What??


    I have been writing about my life with Sjogren’s Syndrome for around six months now. I write what I feel at the time I sit at the computer, so anything goes. But I have never really addressed the very start of my journey. Not when it happened, you all know it was 4 months after having my second child. That was the official diagnosis anyway. No, I am talking about that actual day and what that led to.
    First let me say that I was lucky. My Primary Care doc listened to me and did the right blood tests right away. For most, especially with Sjogren’s, it can take 5 years or more to be correctly diagnosed. Mine came after four months (and eleven tubes of blood) so I was able to get started with treatment right away. Which is important because AI diseases are degenerative in nature. They get worse over time.
    So, what actually happens when someone gets diagnosed with an autoimmune disease? Well, I remember being in the Rheumatologist’s office that day and I remember that my husband was with me. I remember thinking that my Primary doc didn’t think much was really wrong. But the rheumatologist came in and smashed that idea to bits. “Sjogren’s. You have Sjogren’s Syndrome in its primary form.” It was the only AI disease I tested positive for and I had no clue what it was.
    That becomes the exact moment when your life changes forever. It doesn’t matter if you’ve heard of the disease you test for or not. You are toast. You now have a “pre-diagnosis” and a “post-diagnosis” life. You’re life may not change quickly, but it will change. And here’s how:
    First you will be given printouts explaining what your disease is, or more accurately, what it does. As much as the doctors understand it does anyway. Since that day, I have developed more of an understanding of my Sjogren’s than any doctor I see. And I see seven of them.
    Next comes the treatment plan. This is usually different for everyone, though I firmly believe it should be more standardized. I was given a mega-dose shot of prednisone (which caused huge hives) and a prescription for Plaquenil-an antimalarial drug that modifies the immune system and reduces flare ups and swelling caused by the disease. It is a common starter drug for AI. You see, AI diseases are incurable, so they are treated by symptom. As patients, we can be  given pain meds, anti inflammatories, disease modifiers, anti depressants, sleep meds, muscle relaxers, heart meds, kidney meds, water pills… whatever is needed to counter the effects of our disease and help the part of the body it may be attacking. We become walking pharmacies. Or chemical cocktails ready to burst into flames. I’m not really sure any more. So at first I was only on Plaquenil but I now take eight daily medications with the hopes that I will be discontinuing two soon.
    But even with all medications doled out, there is one thing that seems to be left unaddressed by modern docs when an initial diagnosis is made. That is the sudden hole left in the pit of your stomach upon hearing that word. For me, that word was “Sjogren’s”. All of a sudden I was not me anymore. I was not mom. I was not wife. I was sick. And my future was suddenly uncertain. My rheumatologist at the time said something very unprofessional like “If I had to choose a disease to have, I’d pick that one” and I distinctly remember thinking-you don’t have to and I can’t. And that was it. My brain left the building.
    I walked out of the office that day a different person. One dependent on medications to live a normal life, to sleep, or just to be able to move and go to work. I came to accept my diagnosis for the most part. I still have a good, tearless cry every now and then though. And I still take medicine for symptoms hoping someday, I’ll get to take a cure instead.
    I am still sick. I am much worse than I was 20 years ago. But now I view it as just another part of who I am. I reclaimed motherhood, wifehood, and employeehood.  But I again had to turn over employeehood to this disease that just won’t give up. But I won’t either. I never expected I would. Even before I ever heard the word that changed my life so profoundly that day in that exam room.
    “Sjogren’s. You have Sjogren’s Syndrome in its primary form.”
      Well Sjogren’s, I’m still standing. How bout you?...

Monday, February 1, 2016

What It Really Takes


    I haven’t posted in awhile. It’s been hard to write. I’m still recovering from fracturing my back in December. Fun, right? So that’s what I decided to write about. What recovery is like for people like me. People with chronic illnesses. Autoimmune diseases. Chronic pain.
    First, I want to say that my intent for starting this blog was never to garner pity. I don’t want anyone to read it and think “I’m so sorry.” or “That’s so sad.”. Especially those of you who are friends but have not known me throughout this journey or who didn’t realize the true nature of my disease. It’s OK that you didn’t know. I’m fine with it; with this. I started this blog to get information out there. To raise awareness for these illnesses because awareness equals research and Sjogren’s, unfortunately, has very little.
    Mostly, I did this to help others like me who feel like they don’t have a voice and aren’t understood. You see, I am lucky. I have a voice and use it. Often. But beyond that, I am heard. By my doctors, my friends, my family. Not totally understood and I get that. But they try. And it helps to know that they try. It means a lot too. So I write for others that maybe they can use my words as theirs and help their families and friends understand what it’s like to be us. What it’s really like.
    So here is my recovery story. Unedited. No sugar coating. It is one day of PT. Physical Therapy. Today. With an awesome therapist I may add! (She’s trying to kill me, but she’s awesome!)
    It always starts with the fun stuff: warming up the muscles, stretching. They lull you into a false sense of security with the hot towels and gentle movements of your arms and legs! But there’s always a catch. Soon she had me move to a high counter so she could “check my balance posture”. (Apparently code for “determine most difficult leg exercise on planet for patient”.) For me, this was side leg raises to the right with my knee facing FRONT. (As a former ballet dancer that knee position is sacrilegious.) It was also very difficult causing my hip to cramp up immediately. And my pelvis to drop. Which was key to my treatment plan.
    You see, I fractured my back in December of 2015. Previously in July of 2014. But way before then, my disease started attacking the joint where my pelvis meets my spine on the right side as well as attacking my right hip joint. I never realized I started carrying myself differently then. So much so that my entire muscle structure on that side is gone. No wonder I am failing balance tests at Neuro appointments! your stability rests in your core and in your hips. I only have strong working muscles on my left side. I seriously wonder if this is why my right leg is the one being attacked by the “sudden bouts of muscle weakness” effect of my MCTD.
    After the balance tests at the counter, my PT wants to test my hip muscles more on the therapy table. Lying side leg lifts. Good! An easy one. Great! I can’t do it. How can it be that someone who used to be able to raise her leg above her head, and still has half that flexibility, can’t lift her leg twelve inches off the table without shaking? Yet the left leg is so much easier! And my upper back muscles? They’re like completely turned off at the moment. But calves, quads, biceps, the major muscles? They all seem to be OK. And that’s the insidious nature of these diseases. There’s no rhyme or reason to them. They attack at will causing random patterns of disability you may not even realize you’ve developed.
    At the end of the hour, I was completely exhausted. I had drunk an entire 32 oz bottle of water and my lungs decided to get in on the act and swell up a bit. (Sjogren’s can attack the lining of the lungs causing it to swell. For me, it’s occasionally during exercise.) The activity also triggered my trigeminal neuralgia. (Weird facial nerve headache.) My hips and sides were sore. All in one hour that is supposed to be helping me recover from a fractured back and regain my stability. One hour.
    But, I felt great. Because inside I know what I am up against. I know what I need to attack. And I know the cause of all the other issues that cropped up. Yeah, they are problematic and extremely annoying. And sometimes, I can’t work through them. But a lot of the time, I can. I have the tools. And the meds if I need them. And as frustrating as it is to work so little and pay so much right now, I have hope that soon, I will pay less. And if not, well, that’s the nature of my disease. It always has been. I won’t give up on these appointments or on making myself stronger. I can’t. I’ll just have to fight harder to get there.
    And that’s how it is for all of us with chronic illnesses like this. What may be a small or easily recoverable injury for most will be much more difficult for us to overcome. We have to fight our disease as well as whatever issues the injury itself presents. But we’re strong. We’re warriors. We’re used to fighting.

After all,we do it every  single  day.