Tag Archives: family

Seeing The Good: Day 13

I dislike the feeling of constant tension in the air. It’s always lingering, just waiting to burst without warning at any second. Whether it’s a breakdown or an argument, there’s tension surrounding you, whether you’re apart of that particular situation or not. If you’re apart of that heat of the moment discussion, you feel battered, helpless. If you find yourself on the sidelines, you feel the same

There’s really no right way to approach these situations. You either let them run their course or try to say your peace. In the end, there’s really no way of knowing how anything will pan out. It’s not always in our hands.

When you’re chronically ill, there’s not a day that you’re not constantly thinking about all the “what if’s”, the debt that you’re in, and hoping one day you’ll be given an answer to the cause of your pain, why you’re so sick. You watch your family sorting out bills, getting into discussions about this doctor and that doctor. And then there are days where you’re not apart of a now different growing tension, a different elephant in the room. Something you have no part in. Something you have no say in. But it’s there, all around you and there’s nothing you can do. But you wish you could make things different, wish you could make things better for those involved.

Some things are out of our control. All we can do is just try to accept what is and what isn’t. Whatever the situation, you do have the power to let go, to forgive. And the tension that is swirling around you caused by others, all you can do is wait for the storm to pass, as helpless as you feel.

It’s time to let go of all the tension that is weighing you down, that feels as if it’s all just piled up on your chest–and let your heart beat freely, free of any worries.

Healing thoughts and prayers to all-

Kate

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Seeing The Good: Day 11

I don’t think most of us give ourselves the credit we deserve. We’re faced with such a challenge, each and every day, yet, we still manage to crack a smile, help with things around the house when we can, attend social gatherings even when we feel the absolute worst–but still feel like a burden, still feel incredibly helpless. 

I can’t count how many times my folks have told me to stop apologizing over everything. When I break, I say I’m sorry. When I’m buckled over in pain and can’t move, I say I’m sorry. Even though we have no control how we are going to feel the very next minute, we just can’t help but feel like a bother, no matter what.

We feel the way we do because we care. We care about the ones around us and try to be strong for them. And when we feel we have let them down, we can’t help but apologize. That is why we stray from dear ones because we will do whatever we can to prevent them from seeing us in pain.

On days when the pain is bearable, you can show your appreciation in little ways, such as washing a few dishes or loading the dishwasher. You can organize the messy stack of newspapers and magazines which have collected on the floor. Anything you can think of, give it a try. Just don’t push yourself. I can’t begin to tell you the times I pushed myself out of frustration because I sincerely hate the fact that simple every day chores are becoming such a difficult task for me. I’m sure I’m not alone in this and that, you too, have done the same.

You really shouldn’t worry about what you can and can’t do. I know it’s easier said than done. Your loved ones know you’re trying, I can tell you that. They may not show it or act like it. That’s their way of coping.

So, give yourself the credit you so very much deserve. You’ve been through a heck of a lot. And you do more than you truly realize.

Healing thoughts and prayers to all-

Kate

Seeing The Good: Day 2

 

Keep hanging in there. We’ll get through this. Be thankful for this moment, no matter how difficult it may be. It won’t last forever.

Healing thoughts and prayers to all-

Kate

Seeing The Good: Day 1

As I mentioned in my last post, for the next month, each day I will be posting something positive, no matter how bad of a day it is. No excuses. Period.

Eating dinner as a family has always been important to me. I remember writing a paper on it back in middle school, even. Since I’ve been sick, sometimes I’ll eat before the rest of the family or I don’t eat at all. When I do sit down with them, I don’t usually eat the same meal. Tonight they made meatloaf, which has milk and breadcrumbs in it and my mom put aside some hamburger meat so I could make my own mini loaf–gluten and dairy free. Here are the results!

Homemade GF Breadcrumbs
This was my first time making GF breadcrumbs. I looked up a couple of recipes online to get an idea of seasonings and how long to bake it for, but it really was quite simple to do. I defrosted a few slices of gluten-free bread and then broke apart hunks to put in the food processor. Then I placed the crumbs in a bowl to mix with some seasoning. I don’t measure ingredients most of the time (I guess that’s an Italian thing…), but the amount of seasoning really should be up to you. I just sprinkled some oregano and basil in the crumbs and tossed it all together with some olive oil. Then, spread the crumbs out on a baking sheet and bake until golden brown, which was around 10-15 minutes at 350 degrees. After they cooled for a bit, you then mix it with the hamburger meat and soy milk, until it becomes a moldable consistency, not dry or that breaks apart. Then, place in a casserole dish.
 
 
 
And, there you have it. Cooking times vary depending on how thick/how much meat you’re using, but after cooking the meat for some time, you then add tomato sauce over the top, sprinkle with parsley, and let it cook a little longer. Of course you can subsitute a different meat or opt for a meatless version, as well as using a different wet ingredient.
 
So, tonight I sat down with my family and enjoyed the same meal–with just a couple of tweaks. And it was worth it. It always is.
 
Healing thoughts and prayers to all-
 
Kate
 

Getting By.

Hope can always be seen.

My mind is both blank and racing at the same time. There’s so much that I want to say, yet, I just can’t unscramble all my thoughts. Difficult doesn’t even begin to describe these past few weeks—but I say that in every post, whenever I catch up with someone after they haven’t heard from me in a while, and to doctors, especially. You think it can’t possibly get any worse, then it does. I guess that’s why I appropriately titled this entry “getting by” because some days–most days–you have to remind yourself why you’ve hanged on this long in the first place.

Doctor visits are becoming more frequent, co-pays and bills continue to pile up, and collection agencies call every hour of every day. The Emergency Room is no use because I’ve already had every test done under the sun and have had my share of radiation for the next ten years. And the doctor that diagnosed me with Lyme Disease said there’s nothing he can do for me anymore. So, forgive me for breaking. Another doctor promised he’d find the cause of my stomach pain, did numerous tests, came up with a diagnosis, and dropped off the face of the earth when my insurance couldn’t cover this certain “miracle drug”. And here I am, still hoping for answers, still hanging on.

Be thankful for the loved ones already in your life and quit worrying again about the ones that just no longer fit. Not just because it’s the holiday season, but always. A dear friend reminded me that just because I’m ill, doesn’t mean I don’t deserve to be happy. It’s taken a while to believe and accept that. Meanwhile, that’s all I tell my friends when they’re at their lowest, to never let anything get in between of you and your heart, no matter what.

What I’m trying to say is, there are going to be speed bumps and other obstacles that are going to try to run you off course, distracting you from what’s most important: your life, your recovery. But you can’t get distracted, you can’t take your eyes off the road. You need to keep looking forward, through the pain, the tears, the moments when you just don’t think you can do this anymore, and fight. Fight through your weakest days, force yourself to see the sun every morning. When it all goes black, you will no longer be able to see why you’ve hanged to this precious life for so long. But if you keep looking forward, keep your eyes open, you’ll see things you’ve never seen, never realized before. I can’t tell you what you’ll see, but I can tell you it would be a shame to just give it all up, without ever getting the chance to. “There’s too much beauty to quit.”

There’s nothing wrong with just “getting by”. At least you’re still going.

Happy Holidays to all. My goal for the New Year is to submit posts more regularly, to continue being your voice. (((Sending strength and love)))

And as always, healing thoughts and prayers to all,

Kate

“The light of love flows out of one’s soul, but often it goes nowhere because it’s blocked by pain.” -Paulo Coelho

Pain runs deep.

Pain. Whether it’s physical or emotional, there’s no precise definition for it. Go ahead and look it up in the dictionary or search for it online; no one person will be able to describe just how much pain they are in, how much pain they feel, let alone, let some source of reference dictate what pain is and how it’s supposed to feel. That’s the thing with society today. You either feel this way or you don’t.  And if you can’t explain the way you feel, then you must be crazy, right? No, you’re not, but it certainly feels like you’re being punished or toyed with when you’re told that your pain, you’re unbearable, excruciating, all over pain, is just in your head.

The pain that I have been feeling, that I have been suffering with, has delayed me from posting this entry. It also has me avoiding friends and loved ones. Being around them in pain wouldn’t be such an ordeal if I didn’t have to describe how I feel to them constantly. And then they ask things like “When do you think you’ll be feeling up to doing something”, “Are you feeling better yet?”–and the list goes on. Meanwhile, I don’t even know how I’m going to feel the very next minute. The pain I feel can be at its peak the moment I wake up in the morning or I could still be fighting it from the night before. It can get worse as the day goes on or become bearable for some time, like I’m at a stand-still; not getting any worse, not getting any better. My pain prevents me from doing the use-to-be-simple everyday tasks. My pain prevents me from getting out of bed, just barely making it to the bathroom. The pain I feel makes me feel stuck, lost, and guilty. And my pain isn’t just my pain; it’s YOUR pain or someone YOU know, someone YOU care about. The pain I feel can be different from what you feel or what someone else feels, but the point is, pain exists. My pain is real. Your pain is real. Visible or not, pain and suffering are real. Chronic pain sufferers might not have a noticeable wound or scar that is visible to the human eye, but they are suffering, that’s for sure. In silence—and we need to break that silence.

Some days, it’s easier to hide the pain than others. Some days, there’s no escaping it. You smile to pretend you’re okay until eventually, everyone can start to see through it. You use to be asked if you wanted to go to the store or if you wanted to go here or there. You become distant from everyone and everything around you. You’re still you, but you’re not at the same time. Being chronically ill, being in such pain, makes you a completely different person. You become a version of yourself you never thought you’d ever become; lost, lifeless, and stuck—when you yearn to be happy, determined, and free again. Happy to be free of these chronic chains holding you down, determined to start over, and free of negativity. Yes, you’re happy now. You have a roof over your head, a family that loves you, takes care of you, and want’s to be there for you, but you can’t help but wish things were different, wish things were easier for the ones you love so much, that they didn’t have to bear all this pain with you. But they are and instead of wishing things were easier, you need to accept how things really are. This is now. This moment is happening now— and we need to make the best of it. YOU need to make the best of it. Smile. Go out when you feel you have enough energy or just put in a movie, watch it with a loved one. It doesn’t matter if anyone can see through your smile or not. Don’t think about what anyone else may see or not see. If you feel well enough to do something, do it. If you don’t, you don’t.

Don’t feel guilty about feeling well one day and then horrible the very next. You can’t help how you feel, how you’re body feels. Your head might be thinking “Alright, let’s do this!” but your body is thinking “Must…lay…down…” and vice versa. Your body might be feeling good, you’re able to get around better than usual, but your mind is in such a rut and you just can’t snap out of the haze you’re in. Frustrating doesn’t even begin to describe how it feels. You’re at a constant war with yourself—and you just can’t seem to win. What does help is support from others, from family and loved ones, but they’re not always going to understand, just like how you don’t understand any of this, what’s happening, why you feel the way you do, at times. Whether anyone else understands or not, what matters is how YOU are feeling, what YOU feel up to doing—and don’t let anyone else’s opinions get in the way.

Pain also makes you feel disconnected, just numb to everything. Your body is screaming in pain, yet, you feel nothing at the same time. You start to feel like this is all there is, that nothing is going to be any different tomorrow or the day after that and so forth. Eventually everyone around you just loses their patience, not with you, but your illness—but you can’t help but feel like they’ve just had it with you. There’s nothing no one can say anymore and you just sound like a broken record when they ask you what’s wrong. Hurtful comments linger in your mind, but they’re not as hurtful anymore, just a numbing reminder that you’re sick. “You’re only pretending to be sick to blow me off.” “You’re just saying you don’t feel good so you can get off the phone with me.” “You’re always sick.” “The only thing that’s getting between us is you being sick.” “You’re lazy.” “You need to get out more.” “She doesn’t do anything, just stays in bed all day.” “I don’t think the old Katie is ever coming back.” – Just some of the comments that have been said. My 13-year-old brother said a few of those, but even though he’s young and doesn’t fully understand what’s going on, it still hurts because he’s my brother and I just didn’t expect him to say those things to me– but he didn’t expect me to get sick. No one did. The other comments were from friends who don’t understand. I don’t blame them and I don’t hold anything against them for saying those things. That’s how they felt, but they just never stuck around long enough to hear how I was feeling. It’s just meant to be, though, because if they truly knew how I was feeling, they’d feel bad or obligated and I don’t want them to feel like they have to be here, a part of my life, when they really don’t want to be. And as I have mentioned before, reconnecting can be both very good and very painful. You feel like a weight, just weighing everyone down. The stuck and trapped feeling intensifies. Relatives aren’t going to understand because they’re not always around and when they are it’s always; “You look great!” and “What could possibly be wrong?” Your parents already have their plates full with bills, worrying about work, family, and now you being sick. You sit at the dinner table, wanting to say something, wanting to laugh along with everyone, but you just can’t. You’re frozen. You can’t say anything, can’t feel any kind of emotion. It’s like you’re not even in the same room. You tell them how you feel and it’s only right for them to say how they’re feeling back, even though they don’t mean anything by it or the tone of their voice. All of this is a lot. It’s a lot to take in. You feel the way you do because you can’t help it. You’re hurting physically and emotionally. And you’re just trying to bear them both, one day at a time.

Does it get better? Yes, yes it does. Even though the support of others is crucial during all of this, you need to offer support to yourself, be there for yourself. No one is always going to be there when you need them, when you need to hear their voice, to hear it’s all going to be okay. Friends and loved ones don’t know what else to say, so of course they’re going to tell you everything is going to be okay, but you’re only going to believe it if YOU know it’s true. So, believe it. Tell yourself it’s going to be okay. It might not be okay right now or tomorrow, or the next day after that, but it WILL be okay. Even if it feels like you’re just wasting your breath, say it. Say it, say it, SAY IT.

Pain also leaves you with nothing to say. You feel all these emotions and physical aches all at once, all the time, there’s going to come a time where you just become drained. Drained from everything just bearing down on you, feeling like you just can’t catch your breath, catch a break. You don’t want to be seen or thought of as someone who is always sick, someone who just stays in bed all day. You don’t want anyone to remember you that way. I don’t want to be remembered that way—it’s just hard being the girl, being that someone, that was always there for everyone else. You just can’t help but hope and wish that they’d be there to catch you one day, like you were always there for them. But they feel like they lost you too.

You may feel like you have no one, but you have you. You can’t lose you, you can’t give up on you because what will you have left? Nothing. No one can fight for you except yourself. Never, ever give up.

Healing thoughts and prayers to all-

Kate

**Sending love and strength to all our troops, past and present, as well as to their beloved families. They should not just be thought of on Veterans Day, but always. Not many stop and think about any of the men or women supporting us and this country about what they or their family may be personally battling with. We salute you. God Bless.**

“There are no endings, only new beginnings.”

Family, loved ones–the one’s that mean the world and more to us. The one’s that make us feel worth it, worth this fight we’re going through. The one’s that want to be by your side, always, but find ourselves becoming farther and farther away from.

Whether we’re just trying to save them from seeing the pain or to save ourselves from ourselves, we’re doing just the opposite. And the times they think they understand and tell you to try doing this, go do that, to try and “get your mind off things”, just make you feel worse, helpless. You try with all your might to forget the pain, forget that you’re on the path that you’re feet have currently been planted on. You’re just stuck. And you just wish you can wake yourself up, yell at your body to stop being this way, preventing you from do thing things you enjoy, being with the people you love and miss so terribly.

It’s not always dark. Every chronic illness fighter see’s the light, the good, from time to time. It might not happen as much as it used to, but you certainly have not forgotten about the precious, simple joys in your life. And that’s why you’ve hanged on this long, because you remember. You remember when. At times, it hurts. Memories can be very painful, but it’s the tougher times that we’ll look back on and smile, maybe even laugh at. Because these difficult times, these particular dark times made you the person you are today, even if you’re still fighting to get your life back. Most importantly, even when you’re not given an answer or any reasoning for this disease, any of this, even when you feel like you’re holding on to nothing but air at times, you can and will see the joy in things. The simple things. The smile on your friends faces again when they finally hear from you. The warmth of hugs that you never want to stop feeling. The laughter roaring around you from old jokes and “Remember that time…”. It all seems so far away, so out of reach—but we forget that this disease, this illness is not us, that it’s not our fault and we deserve to be happy. We DON’T deserve to torture ourselves, shutting ourselves out from the world, even when we feel like it’s the right thing to do. And the happier memories, the ones that you constantly think about and maybe even make you shed a few tears, those are the memories worth hanging on to. Not the pained memories when you felt you were losing everyone around you or the times you felt nothing but guilty, like you could have, should have prevented this, somehow.

But even after you reach out, reconnect, the fear of rejection, losing all support and contact all over again, are not far from your mind. We need to be prepared, yet not focus on the worst. We have to realize that what we’re going through, this fight, is not easy for anyone else to just take on like that. A friend may want to see you, but you don’t want them to see you at your worst. You want them to remember how you were before this disease has taken such a toll on you. You might be nervous about catching up over the phone, as well. What if you run out of things to say? We can’t help but think the worst. We go through a period where we just shut out everyone and everything. You then take this big step, communicating with the ones you thought had long forgotten you, the ones you thought had given up on you, your friendship, your memories. But you don’t want to think about all the memories, all the good times. You want them back, you want your life back. And you want to start over again, even if reconnecting was too much to bear for either you or your loved ones. You will start again, with or without them. There are plenty of new memories to be made, to be cherished, whether you want to believe it or not, with new faces that actually understand. But if you have that chance to rekindle a friendship, a relationship–would you face the risk of losing them all over again?

Hang on to the ones you have now, the ones that have shown you just how much you are worth to them, hang on to THIS moment in time—because anything can happen. Let loved ones be there for you. And no matter what, never blame yourself over their reactions. You were just trying to protect them from seeing the pain. And if they can’t understand how much love, how much respect you have towards them, just surround yourself by the positive loved ones in your life who are able to understand. But most importantly, forgive them. Forgive the ones who just couldn’t bear to conquer this temporary journey with you. There’s no reason to go around with such a burden in both your heart or theirs.

When you feel like you’ve lost everything, after reaching out, reconnecting–you haven’t. Just think of it as they were never there to lose in the first place. That doesn’t necessarily mean to forget them. Forgetting won’t ease the pain, but you do need to put yourself before others, for your health’s sake. Whatever happens, happens– but this isn’t the end. This isn’t the end for you. You haven’t even begun. No matter what age you are, what illness you’ve been diagnosed with, what stage you’re at with your illness, you haven’t even begun. Life is short. Forgive. Start over, if you must. And, begin again. Continue your fight. Don’t stop. Lyme DOES take time. If only everyone knew how much time it has consumed from you, from your day-to-day life, maybe they’d understand just how much patience, how much time you really do need dealing with this disease. Or maybe it’s for the best that they’ll never truly know. We don’t want to cause more pain, we just want to be understood.

We WILL get the treatment we deserve!

We WILL give this disease the awareness it deserves!

We WILL NOT stop fighting!

Healing thoughts and prayers to all-

Kate