Friday, June 15, 2018

When Your Invisible Illness Becomes Invisible To You

    I recently had a trip to the emergency room.  One of many, I’ll admit. But this one was different as it could have been avoided had I known what was happening.  The problem is, I didn’t see it coming, nor did I actually have the tools to. You see, my illness, which is primarily invisible on the outside, had managed to hide the extent of its recent progression from me by making itself invisible on the inside. So I misread my abilities and ended up in the emergency room.

    I wish I could say that this is an uncommon issue with chronic illness. But I don’t think it is.  We go through periods of intense flare ups, when we experience the full measure of our symptoms from extreme pain to mind numbing fatigue to the loss of physical abilities such as walking.  But we also go through periods of remission, when our symptoms seem to disappear. Although we understand that they are only in hiding during these times, the fact that we feel normal gives us hope.  And many times, a false sense of ability.

    It is during these times that the idea of an invisible illness becomes two fold.  Just like the world cannot see our illnesses from the outside, when an illness it is in remission, we cannot feel it on the inside either. It becomes esentially invisible to us as well.  And given the fact that we are chronically ill, when we don’t feel physical symptoms, we are very likely to give in to the idea that we are more physically able than we actually are. Why wouldn’t we want to believe we are better when feeling crappy is the norm, even if its only for a few days.

    The problem is that we aren’t truly better.  We are still as sick as always, maybe worse. We just don’t feel it.  We have no pain and more energy than we know what to do with. And our instinct is to get stuff done.  It’s hard to sit still and rest when your body feels good and strong. Especially if it hasn’t felt strong in months.  And even though the most logical thing on earth is to let your body use this extra energy to heal more, most of us use it to do all the stuff we cannot do when we are symptomatic.

    In other words, we act like our illness is gone because it has become invisible to us.  Case in point: for many summers, I have been able to help out somewhatwith yardwork by sitting on my butt and using a sharp saw to cut off the suckers that grow off the base of our trees.  Yesterday, I set out to do that again. I was in remission and feeling strong. I stayed in the shade and it was breezy so I didn’t notice the heat. I also didn’t notice how much my recent health issues had actually deteriorated my abilities.  So while I completed what in my mind was reasonable based on years past and the fact that I was asymptomatic, after finnishing I became symptomatic quite quickly in the form of heat sickness, dehydration, and a major migraine event that landed me in the hospital.

    By all measures of my past, I did everything right.  But my illness was underground and not giving me the signals I needed to tell me I was overdoing it.  It was invisible to me. Just as anyone walking by would have seen nothing out of the ordinary to cause them to say maybe I should stop.  My illness is invisible to them too.

    I do understand that this view leaves personal responsibility on the side.  But if you think about it, our diseases change day to day, and sometimes all we have to go on is the signals we get from our bodies.  Understandably we all should know our limits and do our best not to use them, but we are also taught to continue to stay as physical as possible so we don’t lose our abilities.  It’s a constant catch-22.

    So while we need to be aware of our limits and how far we push ourselves, others need to understand what it's like for us when we are suddenly faced with no pain and a normal body for awhile.  It's what we dream about. All the time. Of course we’re going to take advantage of it. And just like others cannot see the pain we are in most of the time, we cannot see when or how bad the return of our illness may be.

    So bear with us.  We are trying our best to navigate a constant roller coaster of symptoms that come and go, get better and worse, and do all of this with no rhyme or reason at all.  If it really were as easy as exertion caused pain and rest avoided it, our lives and treatments would be so much easier!

Tuesday, June 12, 2018

Social Security Hits Again

Well, it finally came. Paperwork from the Social Security Administration. ( Basically, it is my verification packet. My chance to prove to them that i am still disabled and thus am still entitled to my benefits.

It's hardly even a packet. One sheet, front and back, of questions and ten sheets of instructions in every language you can think of. Governmental waste at its finest. But necessary. So i lay out the rules and begin to write out the last 24 months of my life on the neatly spaced but too few lines provided.

Questions like are you working or have you been self employed are easy. No and no. Though i write my little blog and help edit others’ writings online, i have yet to find a way to earn from my writings. So in that respect, i still need my benefits.

It gets complicated when they start asking about the medical stuff. They get right to the point too: is your health better, worse, or about the same as June 2016. (My DOD) That one question threw me. Of course it should be easy ti answer, but its not. Because there are so many factors to consider and too much riding on a ‘fill in the blank’ answer.

You see, my benefits kicked in due to a fractured back 2 years ago. Since then, my lucky self has endured 3 mire fractures in what now seems to be a new reality for me. My back is toast and i have the disease and required medications to thank. So, i can honestly answer that my health is worse. And i did.

But the finality of placing that particular ‘x’ in the box brought up so many emotions that they need to be addressed, and validated.

I did not spend my time since being approved for disability sitting on my butt watching LMN all day. I have sought treatment, i have exercised, i have changed my diet, and i have lost weight.
Medications have been discontinued due to my vigilance and efforts to keep fighting and keep trying to get better. Physical therapy is a way of life. I walk. And i feel healthier!

But AM i better? Picking an answer to this question is like missing a mackerel being thrown to you and getting pounded in the face by several pounds of fish slime. You are forced to admit you stink. After all the pumping up i've done, i still smell like the bucket of bait waiting to be fed to the beast. I am still disabled.

And i can measure my disability in feet and inches. You see, losing weight and feeling better are one thing… but getting better in a real physical way is another. And that's not happening. I can now barely walk around the block. A goal since my first compression fracture in 2015, and one thats not getting closer. I pull myself up stairs. I would have thought my legs would be stronger with the PT. But the disease keeps on as well, and i'm not sure i'm staying even.

There have been other issues as well, such as a routine appendectomy that required 4 separate hospital stays to recover from. ‘Routine’. As in for me, nothing will ever be routine again. My body cannot fight the way others’ can. Or even the way i used too…

ExplaIning these things on a yes/no form with 2 lines for comments is just impossible. Like ‘my migraines are now controllable with diet except my gastroparesis is worse and im only eating mush.’ Well awesome! I have so fewer migraines i'm off topamax! But i'm surviving on cream of wheat! Woo Hoo!

This government update form is for informational purposes only. Its meant to allow them to gain a snapshot of how you compare to yourself from the issuance of benefits.

But it becomes so much more to us, the disabled, the dependent, the ones living day to day in a cloud of getting by. A cloud that allows us the luxury of seeing improvements that don't exist in the long hall. I turn a page when reading without my finger shaking now. But both hands now tremor while doing bigger things than reading.

I was allowing myself to live in the clouds and feed my delusions of getting better until this form came. And the necessity of being real was forced onto my psyche. Because in the long run, it doesn't matter that i can walk around the block. It matters that i break by bending over. It matters that i break lifting a load of wash. It matters that i break putting dishes away.

In fact, I break everytime i feel well enough to participate in life. And that's what matters in deciding if i am better or worse. Because no matter how much walking i do, PT i complete or dietary changes i make, i will still break. Feeling stronger just makes it more likely i'll try moving an antique Queen Anne's chair across the room. Alone. (Ending me up on the couch for 3 days.)

So i am not better, and i am not the same as, but rather i am worse than i was. And how sad is that after the time spent fighting the disease, recovering from fractures and surgeries, winning over migraines, and forcing my depressed, sad ass out into the world to see stuff and do stuff that makes me happy.

How sad is it to have to face the disease head in and admit it is winning.

But that's what the paper calls for. A true accounting. So i gave it one. And my doctors did too, because it asks if you've discussed returning to work with your doc. So i did, and i can't. And really, who would hire me with my odds of fracturing during normal routine activities?

I finished up the form with a listing of medications, appointments, treatments, hospitalizations, and surgeries I've had. (I needed more room.)

And that was it. Found a stamp, sent it in, and wait to see if they believe me or if they decide they need to see the back breaking freak in person. My luck-they will!

Six questions to review and update their records. Six questions that took me from thinking I'm on the way up to landing my butt squarely on the hard ground heading downward.
Maybe it needed to be done. A good reality check is always helpful lest you become so distanced that you forget about your needs in the first place.

I'll say this… having to face how much worse i've gotten in 2 years was eye opening. And cruel. But it allowed me to see the progress as well. The fact that i do still walk after 4 fractures or the fact that i can sit long enough to enjoy my boys showing me something cool. I can be still enough to take photographs and tolerant enough to travel great distances for family.

I'm worse at everything, but can still do everything. And continuing to ‘do’ is my whole goal.

Let the government have the big picture. Keep the little day to day accomplishments to yourself. That's where your healing moments are. It's what gives us our hope and happiness. Its how i measure my progress, even if the hand i’m measuring with hurts like hell!

Sunday, March 4, 2018

The Value Of Makeup For Chronically Ill People

    I will fully admit to being a closet fashionista. But at just over six feet tall, I can’t really indulge in this particular passion, nor would I necessarily want to. Though I love the modern styles; I do not love the idea of magazines setting standards women can’t fit into. Except when it comes to makeup. I love the playfulness and creativity of makeup! And when you live with a chronic illness, there are times when makeup can be more helpful than any drug.
    You see, makeup may seem frivolous to many people, but when you live every day battling illness and pain, your idea of self becomes skewed. It’s like you develop two separate identities. The ‘you’ who hurts and is sick, and the ‘you’ who is not. But because most of us are symptomatic more often, we tend to identify with the chronically ill part of ourselves more easily. And that can cause us to lose a big part of ourselves. The confidence and self esteem that came with the ease of our lives before we became sick. That sense of self is eroded every time we have to fight just to get through the day or struggle to complete a simple task such as taking a shower. But this is where the concept of makeup being a shallow, narcissistic product can be challenged.
    How many times have any of you reading this gotten up feeling like a train ran you over and dragged you to the next town? And when you see yourself in the mirror that’s exactly what it looks like? Now imagine fighting an illness that relentlessly attacks your own body and causes daily pain. What will you look like then? Dull, tired skin and dark circles? And that’s aside from any rashes the disease itself may cause. What a great confidence booster after struggling just to remain standing.
    Are you seeing where I’m going with all this? While I fully understand that the act of utilizing makeup for some is exhausting, been there, I am suggesting that the overall mental boost it can give is well worth it. Makeup can cover our lack of sleep. It can hide a butterfly rash. It can even fill in the creases that our pain faces have caused. Sure, laugh lines are sexy. Grimace ditches? Not so much.
    So this has become another area where I have become a collector. I collect colors. I collect brushes. I collect articles and I collect techniques. Yeah, I know, a woman over fifty should not wear glittery eye shadow. Blah, blah, blah. I love my glittery copper shadow! I also love my plum colored eyeliner and mascara. I watch makeover shows and makeup competitions all the time. I use white highlighter tricks I learned on reality TV. My eyes are my best feature so I play with them all the time. Pretty eyes make me feel pretty. They make me forget the purple circles and puffy bags under the makeup. Or at least they allow me to believe people are looking at the new green-gold shadow I’m trying instead.
    The caveat to all this has been my learning curve. I’d be fooling myself and short changing readers if I didn’t mention the issues I’ve encountered. I wear full face makeup when I go out. I react to sunlight so I protect my entire face. But I also have very sensitive skin. (Maybe autoimmune related, I don’t know.) So in wearing full face makeup, it has taken much trial and error finding brands that do not cause reactions to my skin and especially my eyes. I now look for as much all natural as possible.
    I also use SPF 15 or 30 everything. Even lip gloss and lipstick if I can find it. I have Sjogren’s and my lips crack and peel. I will mix moisturizer with my makeup base as I use cover stick and powder too. I have even created my own eyeliner with hypoallergenic eyeshadow and neosporin gel to prevent infections.
    It took a long time to learn what blush colors match my skin when I rash out, but I always carry that with me to fill in between a rash if it occurs. I will occasionally use lip gloss on my cheeks for a more natural look. It’s easier to find with natural ingredients and SPF. I’ve mixed my own colors of glosses and lipsticks too. But mostly, once everything has been proven, I play.
    So I encourage all of you to play. You don’t need to wear a full face of makeup like I do. I have my own reasons for doing so. But play. Indulge. Find a look that is totally you and perfect it so you can do it easily. Looking good gives a boost and may be the tipping point between staying in or getting out. It was for me this morning. And I know we all need to get out a lot more than we do!

Monday, February 19, 2018

This Is Progress?

    A lot of articles and stories are written about our experiences as people with autoimmune diseases. I’ve written many myself. But I recently realized that not many articles have discussed the aspect of disease progression. And as all of us who are chronically ill know, our diseases do progress. But when they do, it can throw us into a complete tailspin. Here’s a summary of some of the reasons why that many of our friends and family don’t realize.

  1. When our illness progresses, it can cause a whole new set of symptoms we are not used to. As a person who has had my disease for 23 years, I have only experienced two major progressions. The most recent occurence included a drastic increase in dry mouth, extreme hip pain, and balance issues. Except I didn’t put it all together at first. You see, I have to sleep with a fan on. I need the air circulation on my face and the white noise. But it can also be drying so when my tongue started adhering to the roof of my mouth, I assumed it was that. My tongue would wake me up in the middle of the night which is when I would notice my hips. I thought I was only noticing the pain because I was awake. figured it was because I was awake. Of course, now I wasn’t sleeping well. No sleep equals balance issues… Or so I thought. Once I realized what was going on, it became a whole new level of awesomeness. And a bunch of regular issues I had to learn to live with.

  1. With new symptoms come new medications, and side effects. As I already deal with pain, adjusting my meds was easy. I also own a cane and had to adjust to carrying it with me more while I got used to my new ‘center’ so to speak. Dry mouth however, had never been a real problem for me. Sure, I drink around a gallon of water a day (and I carry it in my giant, yet stylish, purse) and I can now sense restrooms like Spiderman can sense danger, but the burning desert feeling was new. So with sticky tongue a thing now and drinking Biotene all day long not recommended, I really had to figure out options. There are medications for it however. And they work. Except now I get even more frequent and intense random hot flashes. It’s a coin flip really, sounding slurry and drunk or looking red and sweaty…

  1. All this new stuff takes getting used to, which tires us out. Pain in general raises blood pressure, heart rate, and temperature. That in itself is stressful on the body. And most of us are in some sort of pain all the time. A progression involves an increase of our symptoms at the very least, which in turn equals an increase in the stress on our bodies until we learn how to manage those symptoms as our new norm. Think about that-OUR NEW NORM. Yes, our norm is constant pain, constant stress of some sort on our body, constantly subject to change. And that’s just from the realities of our disease, not from living life or any regular sickness floating around that all of you normal people consider “feeling like death warmed over”. Y’all have NO clue.

  1. Progressions will happen, even when we take all our medicine. This should be a no brainer, but I’ve been asked too many times: What did I do to bring on a flare up? (nothing, they can come on if I lay in bed for a month-been there done that), Why didn’t I drink more to avoid dehydration? (I did, my body shed it like a fat lizard), Why don’t I just eat clean? (or eliminate this or that or use supplements… that’s not how the immune system works). So here’s the quick low down. Autoimmune (AI) Disease means your immune system attacks YOU. It thinks there’s an invader, turns itself on, and attacks some part of your own body. Medicine can only modify or suppress that response, not turn it off completely or reset the immune system. Not yet. Different meds affect different parts of the immune system, hopefully specific to the different diseases. No diet or supplement can modify or suppress the immune system itself. They can reduce swelling which helps. Because this response is on the order of an allergic reaction, it get stronger over time. In some people this happens slowly, in others it happens much more quickly. But it happens. Meds can only slow it down.

  1. A progression reminds us that we’re sick and ultimately there’s nothing we can do about it. And that’s terrifying. Seriously. Imagine it. You break your leg. It’s in a cast but it heals. The cast comes off and you can walk again but it hurts. OK. You can get used to the pain. Years go by and you hardly notice the pain anymore. Then one day you wake up and take a step but it hurts 10 times worse than normal. You call the doctor and he says, “Oh yeah, I forgot to tell you. At different points in time, your leg will hurt worse for no reason at all. This will continue randomly for the rest of your life. You may or may not lose the ability to walk. We have no clue why and cannot stop it. Sorry!”. You’re first reaction would probably be WTF?! That’s our reaction every time our illness progresses no matter how much we understand our diagnosis. We are secretly delusional. We want it to go away. Now. And when it overpowers us by getting stronger and worse, it reminds us of our mortality. That’s something no one wants to think about.

Thursday, January 4, 2018

Stories From The Second Floor

    Recently, I had the distinct misfortune of of needing emergency surgery to remove my appendix. It went gangrenous and ruptured the day after Thanksgiving. Little did I know that that would lead to a month of fighting for my life and spending more time in the hospital than at home. Due to my autoimmune conditions, my body went bananas and anything that could go wrong, did. But, I survived, a little worse for wear, bruised, scarred, and down 20 pounds-but alive. And full of stories. Stories I’d like to share here because with all the pain and crap we go through as chronically ill people, there’s always that one moment of hilarity that breaks through. After going through an entire month of pain and crap, I found quite a few moments to share.

  • THE ICE CHIPS AND GAS: As the mother of boys, I have always been the referee of farts. I really can’t stand them even though “everyone does it”. So of course, the first rule I’m given upon getting to my room is “no food until I pass gas”. I could only have ice chips. Yeah, I get that this is to ensure my intestines are working again, but no juice, no broth, no popsicles? It was my 5th day on only ice chips (yes, I said 5) when I actually had this conversation with my nurse: “OK, so what constitutes an actual fart?” “Why? What happened?” “I just felt a lot of bubbles escape… well, my butt.” “Oh, we kind of like it to be forceful enough to be heard. So if you couldn’t hear the bubbles escape, it doesn’t count. But I bet it’ll be soon!” She was right too. Later that evening, I sacred my husband by giving a big WooHoo! when I let one rip! Unfortunately, that side effect of surgery takes a very long time to go away leading to much embarrassment and the mantra “my wife is a sailor!” (WooHoo!)
  • THE BUTT DRAIN: After finally healing enough from my surgery and meeting all the requirements to go home, I thought all I had to do was sleep and slowly increase my food intake. WRONG. I quickly developed two major abscess in my abdomen and landed back in the hospital. OK, more antibiotics. But this time they decided to insert tubes attached to bags that would drain the fluid from these infected areas as well. I would be awake but medicated while they did this. (Ummm…) So we get to the procedure room and I get on the table and the first thing they tell me is to lay on my stomach. I did not immediately say “are you insane, I just had surgery!” Instead, they explained that they could not access the abcess from the front. (This keeps getting better and better!)  After the procedure, I ended up with one tube entering my lower back and one entering my upper butt cheek, which I sat on every time I used a toilet. I never did find out exactly where that abscess was which required them to use my butt as an entry point; but I now have a perfectly round scar on my right butt cheek as a memento!
  • TAKE MY ROOMMATE: During my second stay at the hospital, I was graced with a roommate that is the definition of what not to do when you are a roommate in the hospital. She stayed up late (4AM) watching TV (loudly) and laughing as if she was home. She refused earbuds for the TV. (by screaming “get them off my body?!”) She used my shampoo. She argued with her mother constantly. She ordered snack food at all hours. She monopolized the staff. And she refused to wear gowns. This last one is what became the biggest issue. I was fortunate enough to have family visit me often during the day. I warned them what she was like before they came. At one point while my mother was there, my roommate had a “crisis” and came running through the curtains dividing our halves of the room to use the bathroom. (she got the window, I got the bathroom) She was wearing just her underwear. (the no gown thing, remember?) This happened a few more times. Fortunately never when my husband was there. Mom and I dubbed it ‘lunch and a show’.
  • CURTAINS: After my second stay was over and it was deemed the drains were working and I was no longer sick from the abcesses, I was once again sent home with the drains still in and the bags safety pinned to my clothes as the next big fashion statement. And it went very well for quite awhile! Until my intestines revolted. I actually thought it was my Sjogren’s flaring up. I was sore and to be honest, occasionally my system doesn't process water and sheds it all quickly meaning a day on the toilet. But when I spiked a fever, I was told to come back to the hospital. Again! This time it was C-Diff. A bacterial infection caused by antibiotics (for the abcess) killing of good bacteria in the colon and allowing the other bacteria that's normally there (C-Diff) to overgrow and cause real problems. It's also impossible to kill outside the body so I was quarantined. I’ll admit, seeing my husband in a yellow paper dress every time he came to visit was priceless! Anyway, I required a private room. So I had to wait for one to be set up. And it was a nice room: 2 windows, end of the hall, quiet… but no curtain around the bathroom. None! And the one thing C-Diff does is make you go. I kind of needed that curtain. I had to have my husband stand guard more times than I can count, but even after multiple requests, it never came. I eventually got creative with extra hospital gowns.
  • AND MATTRESSES: Then comes the fact that my doctor, knowing my history of fractured vertebrae, ordered a special mattress for me so I wasn’t in pain laying down so much. The problem was, in quarantine, nothing could leave my room. So the old mattress that was taken off my bed was set up in my shower. Right next to the toilet. No problem right? HA! It lasted all of 3 visits to the potty before wreaking havoc the 4th. I was sitting doing the C-Diff shuffle when that mattress ever so slowly folded over on itself and landed right on my head and shoulder pinning me to the opposite wall. I tried, but really was not strong enough to lift it, push it, or stand by myself. I had to pull the red cord.  That means there’s an emergency and brings staff rushing to your room. And here I am on the toilet pinned by a mattress. GREAT! However, the looks on their faces was hilarious. Really! How often do you see a mattress fallen over on a patient who’s on the toilet? I’ll never stop laughing about that day!

    These are just a few of the funny moments that I took away from my month in and out of the hospital. I was there so much that staff knew me by name and the techs doing the testing did double takes. Food service workers knew my preferences and brought me extra butterscotch pudding. They made this horrible ordeal bearable by being so caring.

    Now, there is just one incision left to heal and I need to build my strength back up. I went through something I honestly didn’t think I’d make it through. The key turned out to be my attitude and my sense of humor. Hopefully, I have passed that on to some of you through this story. If not, just remember to always be aware of rogue shower mattresses!

Tuesday, November 21, 2017


   Recently, I had to refill one of my many medications. This in itself is not a big deal. This particular medication is one I have been taking for more years than I can count at this point. My disease, being Autoimmune in nature, messes with the chemistry in my brain making it very difficult to fall into a deep, restorative sleep. So years ago I was prescribed Ambien and have been taking it ever since without issue.
    Of course, everything changes at some point. And for me, Ambien became Ambien ER. I had begun waking up in the middle of the night and having trouble falling back to sleep. But the ER worked. I’ll admit here that I don’t remember if Ambien was always a controlled substance or if it’s classification changed at some point along the way.
    Whichever it was, it doesn’t matter at this point. Because it is a controlled substance now and that is the point of this story. Refilling a controlled substance and trying to understand the NYS statute controlling such things.

For starters, here is the statute from January 2017:

Section 3339.3 Unless an earlier refilling is authorized by the prescriber, no prescription for a controlled substance may be refilled earlier than seven days prior to the date the previously dispensed supply would be exhausted if used in conformity with the directions for use.

    So, the way I read this, I can pick up my prescription 7 days before I run out. For example; I filled my last prescription on October 17th. It was due to be refilled on November 16th. I attempted to refill it on November 14th. I apparently opened the gates of hell, chaos ensued, security tapes were pulled, and I ended up back at the car in tears while my husband went back into the pharmacy to hear hear the outcome of their investigation. All true!

    Now the story with a bit more detail:

    First you need to know that I have essential tremor and peripheral neuropathy. My hands shake and sometimes I can’t feel my fingers. As it turns out, in October, I did drop my pill bottle and lost 2 pills. However, beyond that, my husband works at the hospital where I get my prescriptions filled (I actually HAVE to get them filled there) and we routinely get my meds on his paydays every 4 weeks-hence every 28 days. Or 2 days early. Well within the 7 days the law states.
    Apparently not. When I asked for my medication, the pharmacist was called. When I mentioned I had none left because I had lost two, she immediately stated “I cannot give you any medication. It’s too early. We’ll have to check the security tapes to make sure our techs counted correctly if you think you were shorted.” and she left. I could only mutter “But..” to the tech and wait until she came back.
    When she did, I tried to explain again that I didn’t think they miscounted and I know I dropped the bottle. She then explained that “I can’t give you any pills because you get your medication too early too much and you can only get it the day you run out now.”
    This is a very small pharmacy with a line of people in a hospital where my husband works. I felt accused at this point and about as big as a worm. This is when I heard the INTERPRETATION of Section 3339.3. It is as follows:

Unless authorized by the prescriber, a person has a total of seven early days to use for picking up any controlled substance and once exhausted, that prescription may not be picked up early any more for the life of that prescription as written.

    What this means is, if I pick up me medication early by 3 days in October, I have only 4 days left to use. Forever. Get it? I really don’t but I have done my homework and confirmed this interpretation with other pharmacists in the area. And though it’s meant to keep certain people from stockpiling medications, it creates anxiety for those who may find it difficult to get to the pharmacy on the exact day they run out of a medication that they need.
    So for those of you who are on any controlled substances for treatments of pain, sleep, depression… Be aware of your state’s laws concerning distribution. But beyond that, be aware of your pharmacy’s interpretation of those laws as well. It may make all the difference in whether you can get your refill that day or not. It did me, and it cost me 2 days sleep. But also be aware that there may be ways to sit down and work with your doctor and pharmacy to make it easier for you to deal with these regulations as well. That’s my next step.

Wish me luck!

Thursday, August 31, 2017

Let’s Talk About...

    I got married in 1990. At the time, I was in college pursuing a degree in education. I graduated in 1991 with a BA in Secondary English Education and a minor in Psychology. Afterwards, I went to work helping developmentally disabled children and adults. In 1996, I was diagnosed with the disease that would eventually become disabling.
     No amount of reading, psychology, or education could have prepared me for handling the emotions I experienced as the disease progressed. Each new symptom brought more uncertainty and more pain. After 21 years of this continual roller coaster, I had developed the unfortunate habit of not sharing how I was actually feeling day to day or what new development had arisen. I thought I was sparing my family from knowing how much pain I was in or worrying about how far the disease had really progressed.

                                                  FYI: This is not a good idea.

    Quick recap: I have been married for 27 years, sick for 21 of them, and slowly becoming sicker AND more withdrawn about it. Meanwhile, my husband has been very supportive and has been picking up the slack as I have declined. But he has also been internalizing my pain. And because I wasn’t  talking about it,  he started to make assumptions about my pain and what activities would affect me. Suddenly, we weren’t having sex.
    Yup. I said it. On live written internet. S*E*X. The damn disease affected our sex life and we didn’t even realise it at first. I’ll add a disclaimer here-Sjogren’s can cause sex to be painful, but that’s not what I am talking about. The issue, literally, is talking. Or the lack of it.
    You see, it finally took a few weeks and finally asking my husband what was going on to get to the bottom of the issue. And a big part of me didn’t want to ask at all. Seriously. I’m sick. I don’t need stress of any kind. And not that I had any reason to believe my husband was cheating, I’ve watched enough LMN to know I could be opening a huge can of worms. But up until that point, our sex life had been great, so I had to ask. And to be quite honest, his answer stunned me.
    Flashback sequence: My pain rests, for the most part, in my back, hips and knees - most likely due to spending my career sitting on the floor cross legged and recently having fractured my back twice. That, combined with the amazing amount of rainy weather we’ve been having, has caused me to be in a lot of pain this summer. Even walking has been unusually difficult. Seeing that, my husband assumed that the act of having sex would also be painful for me. He loves me and didn’t want to hurt me in any way, so he stopped making advances and instead started letting me sleep as long as I needed on the weekends. That is, until I finally decided to ask him about it.
    Now, I am happy to say, we are back on track. We had a long talk last weekend and apart from agreeing we both miss sex, we also agreed that we have to keep talking about my illness. I can’t hid it from him and he can’t be afraid of bringing it up to me. It is was it is and it will progress however it chooses. Neither of us can control that. We can only control our reactions and how we adjust to my new levels of ability.
    But I also told him that these decisions have to be mutual. And that even though I understood and appreciated his desire not to cause me any pain, the decision to stop engaging in sex was not his to make. Just like the decision to use pharmaceuticals or herbal remedies, the decisions on what my body can handle physically are mine to make. I sacrificed myself to see my kids play hockey and baseball when they were little because I wanted to be there even though I knew I might be in pain afterwards. The same concept applies now.
    I fully understand that as time passes, there’s a chance I will not be able to participate in sexual activity anymore. I sincerely hope not. But if that time comes, I know two things:

  1. My husband and I will be able to talk it through first. And
  2. He is already prepared to stay with me if I can’t have sex anymore.

Today’s lesson? Talk things out with your significant other. I wanted to shield him from my disease and is constant issues and he wanted to keep me from getting physically hurt. But we kinda hurt each other anyway. So it wasn’t worth the time and effort to begin with was it?

    Now go on y’all! Get to bed!


Tuesday, August 8, 2017

Five Support Group Personalities


    For those of us who are chronically ill, one of the most common resources used today is the Support Group. Generally, this is a good thing but sometimes, support groups can become clash of personalities.

    Here are the most common Support Group personalities and how to avoid being one of them:

  1. The Debbie Downer: OK, Support Groups are designed for people who are experiencing problems. In this case-chronic illness or pain. Debbie Downers are the epitome of this. Every post is a litany of complaints and questions of will this ever end and why me? The problem with people like this is that they have nothing to offer the group. Their posts are only drains on the group mentality as they don’t even want advice or suggestions. Every comment is met with ‘I tried that’ or ‘I can’t take that because’… Debbies only want to hear ‘I’m so sorry for you’ or ‘you’re so strong to keep going through all that’. They want pats on the back. And don’t ever look to them for support or advice on anyone else’s posts. That’s not their style.
  2. The Hijacker: Do you remember as a kid playing the card game War? The high card wins? There are people in support groups who, for some reason, jump in on threads for the purpose of hijacking it all while denying that’s what they’re doing. They just mention that they too have A and B but that they also have C or that their version of A and B is so much worse. Then they’ll state that they don’t mean to shift focus (which they have obviously just done) but they want to fyi that many of the suggestions offered have not worked for them. Really? Hijackers are a subclass of Debbie Downers. They will immediately get the ‘I’m Sorrys’ and the ‘We’re here for yous’ all while denying that was the reason for their comment.
  3. The Nature Goddess: These people usually post to be helpful but do so in a very forceful way. Their opinions are handed out attached to 100lb bricks of granola laced with references to different articles they view as proof of their point. The problem with them is that they typically use aggressive wording when stating their opinions. Goddesses give the impression that the research out there on diet and natural remedies is as good as that done on drugs and pharmaceuticals in treating disease. Some Goddesses also tend to use language that would scare anyone off taking a pill by calling them poison and making blanket statements about side effects. Understandably, they are passionate about their lifestyle and about treatments that work on certain parts of chronic illness, but Goddesses are good at causing confusion in support groups by the very nature of what they present.
  4. Pill Pushers: Opposite of Nature Goddesses, but just as harsh, Pill Pushers strongly believe in medication as the only way to go to ward of flare ups and progressions of these diseases. The problem with them is the fact that Pushers tend to believe in a certain medication over all others and will go to great lengths listing all the bad things and side effects of any other medication to get their point across. To them, the concept of medications working differently for different people is inconceivable and what’s best for them isn’t necessarily best for all. The fact that the side effects they list may never have happened or that there may be people in the group who have had great success on a medication they think is bad doesn’t matter to them at all.
  5. Long Termers: (Yeah, me.) These people have been fighting these diseases so long that they have experienced almost everything they can throw at us. They have also tried so many medications, supplements, weird treatment options, exercises, and what not that they can fall into the trap of thinking they know it all. Certainly, Long Termers know more than the average bear. They have seen a lot work and have seen a lot more fail. They tend to want to make sure that the “correct knowledge” gets out there. Which is problematic in itself because “correct knowledge” is actually different for each person. So Long Termers end up taking on more people than they should by trying to correct them and telling them the right info. And people don’t always take that well.

With these five personalities found in pretty much every support group, the only way to combat them is to be aware of your own behavior and reactions. Avoid being a Debbie or Hijacker by watching the number of posts you write about your negative stuff. Yes, the group is there for us to vent and complain, but in truth, the more we offer help and support to others, the better we feel! In reality, a group that is designed to offer us something we may not have in real life is actually an alternative treatment itself! And let others have the spotlight if they started the thread. It’s their pain, their issue. We can have our turn in a different post.                                                                                                                                                                    
As for our Goddesses and Pushers, they both need to take a step back. I have seen way too many posts from both go very wrong. And I am not above admitting I have been involved in some of those because I have taken offense at some of the claims made. It has always come down to wording. There is no cure for us, only times of remission. None of us should present our path as a cure. We should also avoid fear mongering by labelling medications as poisons or as things with side effects worse than the disease.

Long Termers need to watch their words as well by withholding comments at times and also realizing there are lots of new treatments out there that weren’t available when we were diagnosed. In this situation, we don’t know it all! We all need to realize that presentation counts because no one likes a know it all! (Yeah, kinda directed at me…) We can only present what we have taken or are taking and how it has affected us. Period.

By keeping our posts divers and our language neutral, we allow everyone to stay involved and open minded. We also give them the ability to research their own choices and make their own informed decisions. And really, isn’t this what we all want anyway? Info and tips that we can all research and make our own decisions on? I know it’s what I want...