Friday, September 30, 2016

Bugger Off

I know I have mentioned my laundry list of diseases before, but I will again here before getting into the topic of this essay. I have Sjogren's, Mixed Connective Tissue Disease, Fibromyalgia, and Inflammatory RA. Impressive, huh? And I've come to accept and live with the effects of each of these conditions on my body when they appear. Until now.
You see, lately, I have developed a new symptom that is unlike any other I have had to deal with. And it is driving me totally nuts. I have started itching every day, all day, almost everywhere on my body. And I can't figure out how to stop it.
Have I changed soaps, you ask? Nope. I've always had sensitive skin so I rarely if ever, change soaps, lotions, or makeup. Have I changed laundry detergents? Nope. Same reason. In grade school, we found out I am allergic to Bounce fabric softener sheets, so now I smell test everything and pretty much stick with one or two brands. Perfume? Never. Cologne? All go through my approval. Cleaning products? Same as above. New meds? Nope. Same water system too.
So that really does leave the disease and the disease process. Sjogren's is known for causing neuropathies. I have had facial neuropathy - itchy jawline- for years and recently developed trigeminal neuropathy which runs along the face and head causing pain.
But only recently have I developed itchy arms even though I shower. And itchy upper chest and upper back area. Itchy lower legs. The bottoms of my feet, and boy are those hard to itch! My palms and wrists. My lower abdomen. Sometimes all at once, but more likely one at a time, preferring to move around as I scratch one area forcing me to play a very uncomfortable version of “Tag” where I'm always It.
And when I get totally sick of this game, I'll use a lidocaine cream to deaden everything for a bit of relief. But I truly don't know if that's the right thing to do or not. It's easy. That's why I do it. And it's not ANOTHER pill to take, with more side effects and chemicals and all.
I know I will have to bring it up to my doctor. I get bumps that turn into swollen scabby areas and on someone like me, immunosuppressed, any open wound can turn ugly quickly. But still, I itch all the time and I need to make it stop. Even dealing with the pain of walking and sitting and bending and climbing stairs which are all daily pains for me now don't compare to this constant itchiness.
So for now, I itch. I use cold showers. I take benadryl. I use lidocaine cream. And I do weird little dances that feature me slapping the crap out of my arms and legs. And my husband gives back rubs with lidocaine, sometimes when I don't even need them. All to try to keep muscles relaxed and nerve endings happy and not overly sensitive. And maybe, just maybe, I'll get some sleep tonight instead of feeling like I'm on fire.
If not. Maybe I'll right more. You all deserve it. You've waited so long while waiting for me to rejoin the world of the living since moving in to care for my mom Thank you for all your thoughts and prayers. She's doing really well!

Thursday, September 29, 2016

Why I Hate That Eyedropper Commercial

Why I Hate That Eye Drop Commercial

    *WARNING* Today I’m on a rant. You see, there’s a commercial out there in TV land that drives me nuts. I absolutely hate it. It’s supposed to make you aware of a medical problem you may have and, of course, what the perfect medication to solve it is. Why would I have a problem with that? I’ll tell you…
    In our technology stuffed world, we are at risk to overuse our eyes. When we stare at computer screens and smartphones all day, we literally forget to blink. (There’s actual research out there on this but for now you’ll have to take my word for it.) Since our society has ‘evolved’ so much technologically,  we no longer blink enough. When we don’t blink, our eyes dry out. You see, blinking, to the eyes, is basically the same as applying lip gloss to the lips.
    Enter the use of artificial tears. They’re readily available over the counter and extremely safe. They come with or without preservatives, in single serve vials, larger size bottles, or as extra moisturizing gel drops. All meant to aid in keeping our eyeballs healthy while we work, text, and surf the web. That’s their sole purpose. To moisturize our eyes. So how did a totally new disease hit the airwaves creating the need for a new and expensive medication, and why am I wrung out about it?
    First, I’ll say I have no problem with the medication itself. It has it’s purpose. It’s how it’s being marketed. Basically, they’ve created a whole new ‘disease’ based on the phenomenon described above. Chronic Dry Eye Disease. Seriously? And adults can’t figure out how to deal with this? Yes, my snarkiness setting is way past stun right now. But I still haven’t explained why my reaction to all of this is so personal.
    It’s because I have Sjogren’s. Plain and simple. Sjogren’s is why I’m totally off kilter about Chronic Dry Eye ‘Disease’.
    You see, Sjogren’s is truly a disease of dryness. Our bodies attack water producing glands. We don’t utilize water appropriately. The most affected part of our bodies is our eyes. So hearing that there is suddenly something called ‘Chronic Dry Eye Disease’ out there is a little like being slapped.
    In one respect, I feel that way because if there is that much of a problem that you are seeking medical help for your eyes, you either are not taking proper care of them with OTC products or your issue could be much worse-like Sjogren’s. But a pharmaceutical company has just produced a product that will reduce your need for other moisture drops. This eliminates the likelihood of further testing and makes them a lot of money for awhile. Because if you do have a disease like Sjogren’s, it WILL progress. Their eyedrop won’t stop it. It just lessens one symptom for awhile.
    Creating a new disease like ‘Chronic Dry Eye’ also gives the impression that that issue is comparable to the dry eyes we deal with as Sjogren’s patients. It’s not. Yes, most of us understand the gritty feeling of dry eyes, feeling like there’s a piece of sand somewhere up under our eyelid, even the hot swollen feeling dry eyes can produce. But our eyes are under attack. Many of us have had glands in our eyelids swell to the size of shooter marbles. We routinely have silicone plugs implanted in the large holes most people associate with crying in an effort to keep moisture on our eyeballs. (I have had to have my plugs surgically removed.) We run the constant risk of our eyes themselves swelling up. Drops help, but there is no cure. In fact, the primary med to treat our disease can actually blind us.
    So forgive me if this rant sounds particularly harsh. But living day in and day out as I do, and so many others with chronic diseases that are constantly attacking our bodies and our spirits, I simply have had my fill of the ‘Oh yeah! I get that too!’ mentality. No, not getting sleep last night does not equate to you understanding my fatigue. Your tennis elbow gives you no insight into my body wide joint pain. And your computer induced dry eyes are nothing compared to a pair of Sjogren’s attacked dry eyes.

            But go ahead and cry for me. Because I can no longer cry at all.

Wednesday, September 28, 2016

My Best Friends Can't Talk

     This year, I turned 50. 50 years old. Half a century. Not a young kid anymore. But parts of me still feel young. I still laugh at stupid jokes. I still fall for sight gags. I still love the adventure of exploring the unknown. And I still sleep with a teddy bear.
     Shocking is it? Having a teddy bear at my age? Well, I actually have two bookshelves full. And that is an extremely pared down number from years past. You see, teddy bears used to be my only friends. It has taken me decades to grow enough trust in myself to be able to start passing on my support system to others.
     Here's my story: I started collecting teddy bears at a young age. I didn't have siblings the way most kids did. When i started walking, my brother and sister were already in their teens and had their own lives going on. I was “little sister” baggage to be left behind. So I was alone a lot. I understand that now, but I  cried a lot at the time. And started to fill my bed with friends who looked as sad and needy as I was.
     Unfortunately, it was also made known to me that I was not a planned member of our family. To be brutally honest, I was told during an argument with my mother that I was not wanted. That I am only alive due to the fact that my parents didn't believe in abortion. I was 14 at the time yet so much of my childhood made sense in that context. Always being turned away so mom could deal with the problems of my older brother and sister. Rarely doing anything right even though I was too young, really, to be able too. Rarely experiencing hugs just because…
     But none of that happened in my bedroom. My personal sanctuary where all my animal friends were. I told them everything! I told all my secrets to my teddy bears. I told them my dreams and ambitions and they always supported me, never belittled me. I told them my problems and they commiserated with me but didn't blame me. I made mistakes and they did not get angry. They laughed and said it was ok and I'd do better next time. And my bears always hugged me. They were happy I was part of their lives. They never said i had ruined their plans. I loved my bears and they loved me.
     But beyond that, I had to learn to problem solve on my own. My siblings moved out and started college before I was even 10. I never had the confidence they had or probably the relationship with my mother that may have allowed for asking for advice. I learned early on that my interests and achievements would be shot down. So I utilized my fantasy world.
     I used my bears as different sides to every problem, argument, or decision that had to be made. It allowed me to come outside myself and gain perspective that others might have gotten from parents or siblings that I just didn't get. I learned to open my mind to several possibilities at once. This skill served me well all throughout my career and still helps as I try to teach my kids how to navigate life as it is today.   
     As I grew older I had more in depth conversations with particularly favored bears. I worked out specific issues with them. I talked through friend problems, boy problems, peer pressure, and family problems with my bears. I did this all alone. I read self help books and psychology books but I liked talking it out so I used the bears. It has remained a safe way to let my mind flow when chaos seems to be what's taken over and order needs to be restored.
     The sad thing about it is the fact that normal relationships occur during middle school and high school that are supposed to act as sounding g boards and help build the self esteem you need as an adult. That never happened for me and lack of a parental role model to fall back on and take over left me to flounder. I turned inward and created a way to teach myself some higher level skills but the self esteem suffered and my overall shyness kept my in a self imposed prison for many years. My comfort was always a teddy bear or other stuffed toy somewhere because it could never hurt me or turn on me if I said something stupid.
     I am now 50 yrs old. And it finally just doesn't matter any more.

     (And yes, I always had a teddy bear on my

Tuesday, September 27, 2016

Why I Still Go Out Even Though It Hurts


    I spent this past summer taking care of my mom. She had knee surgery and then fractured her back. So I haven’t had the chance to really go out and enjoy the summer. Well, considering how hot the summer was, I’m not sure I would have actually gone out, but that’s not the point. The point is, even though it’s difficult and often painful, I still chose to go out and do stuff at times. And that’s not only OK, it’s necessary. Because if all I do is play it safe and avoid what might cause me pain, I’d never actually live.
    Case in point: This past weekend, there was a festival about an hour from where I live. I really wanted to go. A friend from high school designs jewelry and had a tent there. But driving longer distances is very painful for me now and I don’t like driving alone. So I got my husband to drive me and we set out.
    When we got there, it was chaos. I haven’t been to Naples in a long time so my memories are of a much smaller event! Now there are blocks of vendors.  You should know I’m someone who loves wandering and looking at stuff. At garage sales, antique malls, craft sales…  But I also know my limits. So I messaged my friend to get her location to eliminate getting lost. About 2 ½ blocks away. Not bad, not great, but I made it and we had a great time.
    Anyone with Sjogren’s or who knows about Sjogren’s knows that sunshine drains our lifeforce. It was really sunny and I was drained by the time I got to the car after several stops on the way back. Now, it’s two days later and I’m still recovering. Yesterday, I slept until 1:30pm. Today, my muscles feel like noodles. So the question is, why put my body through all that?
    And there’s no easy answer. In one respect, I do it because I want to. Not that I want to hurt. I want to go out and see people. I wanted to see my friend and see all her beautiful jewelry. This is stuff she started after high school, after we lost touch. I have another high school friend I struggle to go see at book club meetings. Not as hard as going to the festival, but sometimes, just getting out of bed is tricky. But I want to see these people so I do. My alternative is sitting home alone.
    Another reason I go is the fact that I still can. I realize I just stated that going out is causing me several days of recovery, but the simple fact of the matter is that I can still go out. My future is uncertain. I don’t like admitting that. But it’s true. I know it will be painful. I’m already there. But this disease is degenerative and no one knows the path it will take. It can take my mobility by taking my joints. It can take my strength by taking my muscles. It can even take my intellect by taking my brain. So, I need to continue to do what I can now even though there may be consequences.
    But the final reason to do things even though they may cause pain or long recovery periods is the fact that when it’s over and I’ve succeeded, I feel a boost of self esteem, at least for a bit. This disease has taken so much and will continue to take much more, that showing myself I can still do some of the things I want to do is very important. Everyone needs that type of boost now and then, especially those of us who are being faced with our inabilities more and more rather than our abilities. It’s disheartening and depressing. So getting out and doing thing we enjoy is necessary for as long as we are able.
    And we are able. Just maybe not as much as we were. But we are able!

*Spoon Necklace by Marlene Turner Design