Tuesday, December 15, 2015



A Word To The Wise…

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    OK. So this really happened. And I want you all to take note. Not that what I usually write isn’t true. It all is. (Even the embarrassing stuff.) I admit it, I put my entire life out there all for you so Sjogren’s can be better understood. And so that you as a reader can maybe find one hint that helps reduce your pain. To me, that would be absolutely awesome! But today, I want ALL of you to read what I say and I want ALL of you to DO WHAT I SAY.
    Why? Because I hurt right now. A LOT. Why do I hurt? I want to make up a fancy medical term for it like Clavicular Myositis or Interstitial Ribosis. (Neither exists by the way.) Put simply, I hurt because I was stupid. I was feeling strong and I moved a very small desk upstairs. I overdid it.
    And now I am paying for it. Big time! Here’s the thing though. We all over do it. Because we all have those days when we feel normal. When we have no pain. We wake up and jump out of bed and are halfway to the kitchen before we even realize it. And when we do, it’s like we freeze in place with the realization because we don’t want to jinx it. Or we are about to break into the MC Hammer dance. (You know: STOP! Hammertime! Oh Oh Oh Oh Oh Oh Oh!) But that’s when the trouble starts. We start thinking.
    And thinking is something we should never do. Especially on a good day. Because we start thinking of all the things we can do today. And why not? We feel good. We are not in pain. It’s our Golden Ticket Day. And our houses are total wrecks. (Funny how we will live with it until that day when we feel good.) We start to think and then...We make a list.
    Now we’ve done it. Because lists are dangerous. When we make lists, it becomes all too important for us to finish them. Normal people can finish their lists the next day. But we cannot. We cannot guarantee we will feel well enough to do the work the next day, but more than that, to not finish a list-to us-is to fail. Especially on a good day. And so much has been taken away from us already that we fight feeling like a failure each and every day as it is.
    So on our rare day of feeling good, the first two things we do-think and make a list- set us up for failure from the start. Why? Because we want to be productive. And that’s not such a bad thing. If we do it in the right way. Which brings me back to my story about the desk. It needed to be moved. In the past, I was capable of moving it alone. I just can’t do it anymore. And I should have been able to admit that to myself.
    You see, having a chronic, degenerative illness is all about acceptance. Acceptance of the illness, acceptance of its effects on the body, acceptance of the pain. But the hardest thing to accept is the fact that it is always changing us. Day by day, year by year, it takes more of our abilities away. Whether it’s the ability to open a jar or the ability to walk, these diseases slowly weaken us and we have to accept it. We just do not want to.
    And that is what led me to the place I am in today. A place of pain and humility. Yes, I got that desk into the living room. But I have yet to use it because I injured myself doing so. I have had to rest and lay down since December 6th. (Today is the 16th.) All because I did not want to accept my new level of abilities or admit my limitations. I was feeling great that day. But I acted as if I was the same person I was before I got sick. And I am not.
   None of us are. So do what you will with the tips and advice in my other posts. Read my blogs or not. (Hopefully you do and you laugh.) But please, do this one thing: set your goals appropriately and then lower them. Do NOT injure yourself trying to get done what didn’t get done when you were hurting anyway. Better yet-take yourself to a movie. No one ever overdid it and injured their entire upper back watching Magic Mike XXL! (That I know of…)

    

Monday, December 7, 2015



A Letter Of Thanks To Julie 22 Years Later

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   To this day, I remember your face, though I only remember your first name. Julie. We were not close. Not close at all. Work acquaintances really. I had only been there a few months when I got pregnant. And got sick. It was simultaneous. But no one knew how bad it would get. Or what it would lead to; the reason that I have not forgotten you almost exactly 22 years later.
    I was an evening scheduler for Home Health Aides when I got pregnant for the first time. I scheduled the West Side and you scheduled the East. It was not an easy job. We couldn’t leave until all our open clients had an aide scheduled for that time slot. And that included openings that occurred while we were working, not just the list we were handed when we came on.
    I took this job because I had just gotten over surgery to reconstruct my ankle. An injury from my previous job. A job I had to leave due to it’s dangerous nature and the fact that the management wanted to put me back in the same situation upon my return. So I didn’t trust anyone. I didn’t open up easily. And when I got pregnant, I assumed it would be looked at as a bad thing. But then I got sick.
    The doctors called it ‘Hyperemesis’. To me, it was such extreme morning sickness that nothing I ate stayed down. If I could eat at all. I didn’t gain weight either. After two weeks of this, I was removed from work and put on bed rest for a week or two at a time. After only 5 months on the job I was on medical leave and I was convinced no one really cared. Not just because no one really knew me but because the supervisor didn’t believe my condition was real. (The fact that she herself later developed the same condition and apologized for her treatment of me was hollow at best.)
   After 18 weeks of hyperemesis, and several hospital visits, I was finally able to eat (enchiladas-??) and gained a bit of pregnancy weight. I even experienced the joy of being pregnant. At 20 weeks, I felt movement! (We skipped church that day!) I made an appointment to get clearance to return to work. But I never returned to that job. I blacked out on the way to that appointment and ran off the road. My blood pressure was high. I was never given clearance to return.
    At 26 weeks, I gained 27 pounds all at once. I knew it was bad. I was diagnosed with ‘Preeclampsia’ and hospitalized. Preeclampsia is Pregnancy Induced Hypertension (PIH) or Toxemia, and it is very dangerous. I lasted only 2 ½ more weeks before having an emergency C-Section. My first child, a son, was born extremely prematurely and weighing only 2 pound 2 ounces. Casey was born on December 28th at 12:31am. My leprechaun had become a Christmas Angel. And I was afraid.
    I was also alone. Of course I had family that came to visit. But friends didn’t. Not right away. After all, what do you say to someone who just had the smallest baby they had ever seen and who didn’t yet have an above average chance for survival? My son wasn’t dead, but there was no guarantee he would live. And if he did, there was a high probability he would be disabled. No one knew how to handle that so they stayed away. Except for you.
    You showed up with a bag full of baby items. Tiny wrap onesies, blankets. matching hats and booties. These weren’t from the office either. They were from you. You acknowledged my son and his size. And you treated me like any other new mom. You gave no thought to the fact that we didn’t truly know each other. And for that, I am ever thankful. You turned an awkward and lonely situation into the joyous situation that it should have been from the start.
    Now, 22 years later, I want to tell you “Thank You”, Julie. I may not ever remember your last name, but I remember you. And I remember that day. And I want to tell you that Casey is doing just fine. In my estimation, he is perfectly normal contrary to all predictions. He is a carpenter now. He loves baseball and hockey and has a steady girlfriend. He is 6’0” and 190 lbs. But every now and then, I still see the little 2 lb 2 oz baby boy trying to push off the sides of his isolette in the pale blue hat and booties you gave him.
    I want you to know that I still have one of those outfits in my son’s memory box. And that what may have been a small thing to you still brings tears to my eyes and will never be forgotten by me. You made my son’s birth normal. And I love you for that.

Friday, December 4, 2015



You Are Worth It!!

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   It’s happening again. And I won’t let it go. It’s not in my nature. Last time it was family that didn’t understand. Now it is friends that can’t find the strength to carry on. And I get that we can’t do it for them or make the decisions for them or live their lives for them. But not to speak up, to me, is criminal. Especially when more of us have been where they are now than they can ever know because we just won’t be open about it. No one really talks about suicide, thoughts of, attempted, or successful.
    You see, in our world-a world of constant pain-suicide rates are high due to the pain. Much of our pain is denied by the outside world. Here’s why: When it comes to pain, the definition is subjective. I had my ankle reconstructed around 24 years ago. Before I had kids. And I had natural childbirth by accident. My reconstructive surgery sill stands out as the worst pain I was ever in. It’s bone pain. Like my broken back. To me, bone pain outweighs everything else in terms of level of pain. Ever.
    But debilitating pain? That remains in the head. I mean migraine pain. Or the type of neuropathic pain that ends up in the head and face and eyes. I can’t move when this happens. No light, no sound, no smells, and no food. I am a slug. And there is so little relief on the market. But the point that I am trying to make is that these pains are on MY personal scale of horrible. Not everyone’s. Other’s may sail through bone pain and have an easy go to for migraines or neuralgia. When you don’t, living with it day to day can be the very literal definition of HELL.
    And I have been there. And that is where this gets real. Because I do not know how to joke about this. There are no House Gnomes to blame and my Furbabies help a lot but there are days when even they can’t lick all the tears away. And on those days, when my family has reached their limit of understanding or that inevitable brick wall of helpfulness, I have turned to the darker thoughts. I think we all have. It’s normal. We need to admit that.
    What more of us may need to admit and talk about is the fact that I went farther. Yeah. I did. And no one knows. You see, years ago, I was into medieval reenactment in college. I don’t do it anymore, but i had a ball! I even went to “war”. I was an accomplished fencer in the round. And I still own my two daggers from that time. I keep them by my bed as I don’t believe in guns. Daggers by the bed and a chronic disease that causes pain and depression. Not a good combo. And yes they are sharp. Just not razor blade sharp.
    Anyway, after a particularly bad trip to the ED and argument with family about how my disease had progressed and money. Money always enters these arguments-another discussion though. I was distraught and truly felt worthless. The thoughts of everyone being better off without me around took over. And let’s be honest. How many of us with chronic illnesses have these exact thoughts? Seriously now? I am just words on a paper to you so admit it to yourself. Let it out and throw it away. Throw it far away because you are so worth the moon and the sun and all the stars in the sky to everyone in your life!
    I tried to cut myself that day. There. I said it. You know. All of you. But I was too afraid. And I kept seeing my kids. My beautiful awesome boys whom I felt I was burdening with my illness and the fact that I was constantly sick. The ones who love me anyway but don’t know how to show it other than getting upset at me and telling me not to do stuff or asking me why I try. They are not poets. But they care and killing myself would have changed their lives. Changed their entire path on this earth. And I love who they are now. There are also others who would have been left wondering what they did wrong. And that is not fair.
    Yes, We are the warriors of pain that no one else knows. We are the small voices of the world that endure the unendurable. That cannot be heard. Because to hear us is to acknowledge us and maybe that is a pain our loved ones can’t handle. But we go through this for a reason. So if anyone else in our lives ends up going through it, they can count on us!
    I never tried again. I can’t say I haven’t returned to that dark place of thoughts. But it doesn’t affect me in the same way anymore. Now, I am much more able to refocus on at least one blessing in my life. And I want anyone out there reading this to do the same. And if you cannot find a blessing in your life at the moment, please-do NOT take action. PM me instead. I will listen. I care. I will take your dagger and hold your hand so you can get through the night.

You Are Worth It!!

Thursday, December 3, 2015



It’s Foggy In Here

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    So on Sunday, my husband and I went over bills and phone calls and general household stuff that had to get done. I made my to do list as usual so I’d remember what I had to do on Monday. I put it away, played Candy Crush, drank my water and went to bed with the fan on as usual. At that exact moment, my house gnomes woke up and decided they needed the paper my list was on much more than I did and relieved me of it as I found out the next morning.
    Monday morning and no list. My memory is not the best. But this should be OK. I had 4 phone calls and not many errands. So phone calls first. 1) The Bank-that’s easy! I called the bank and got instructions on how to close one account in order to open it in a different profile. Or maybe not. We want to open the account profile in my husband’s name. Apparently that means I can’t be given instructions. Seriously. Bang head on wall. Now need another errand. (Banks should handle HIPAA by the way. And the ability to purchase weaponry. But that’s a totally different paper…)
    OK. One call down. 2) Next... Next… Wait. What was the next call? Ummm, the boys? The house? Doctor...YES! I have to find out when my next appointment is! Done! Friday at 10AM.
3) Call…..      ………..        ………..        ………… (does this happen to any of you?) Seriously. Just yesterday, I conversed with my husband and made a short list of stuff to do and now after only two phone calls, it has completely jumped out of my head. Unbelievable. Oh yeah! Insurance Agent! YESS!! So number 4 is… I give up! Done. I’ll figure it out later.
    So on phone calls, I’m ¾. Not bad for someone who openly admits to a bad memory though I am not sure it’s from the autoimmune stuff or the medicine. And unfortunately, either makes daily life difficult. Not that I forget everything. I don’t. But there are days when I forget a lot. From getting dog food to making the one phone call necessary to pay our electrical bill. The worst is forgetting appointments or meetings with friends. I have lost a lot of friends because I have not met up with them due to forgetfulness or plain disease effects. I hate that about myself.
    Now for errands. I need to pick up bread. That I know. I run out to Lori’s, get the bread, in and out. Now for, ummm, OH! Bras! They were sent to Greece Lane Bryant. Up north. No problem. Only 25 miles away. So I drive up there, park, walk to that store, make the exchange after trying on way too many due to weight loss, and walk/drag back to the car. I’m already exhausted and thirsty. I travel with water. I chug. What’s next? I have absolutely no clue! Hahahaha. So typical. The more I push myself, the more tired I get, the more I forget.
    This is why I make lists. Like the one the Gnomes took. And I also lose these lists all the time. So I just purchased a purse journal. A small one to write my lists in and put right back into my purse. Hopefully house Gnomes hate the inside of purses. And that I will remember to write down appointments on it as well. I got a pretty one. If I have to use one, I want it to be pretty! Like my cane-if I have to use it, I want it to be cool.
    So back to my errands. What’s next. Ahhhhh……….. ALDI! Yup. Fruit! That’s 3/I have no clue for errands! Wait a minute. ALDI is way back by Lori’s. I should have that right after getting my bread. That’s why lists are helpful. They organize where my errands are too. I am wasting gas because I am driving back and forth and back and forth. I am so over this bad memory thing. Now I’m just going to stop at Starbuck’s and get some really strong coffee with caramel. I want caffeine. And sugar. And maybe this will trigger my memory. Maybe…

    Or maybe I will be fast enough to catch those damn little Gnomes before they get away with my next list!