Wednesday, June 28, 2017

Gosh that felt good

I even surprised myself today. I was leaving a store and ran into someone I haven't seen in a while. After a few minutes of chit chat she  asked me how I was doing and I answered, "Better." I didn't think much about my answer until I got n the car. I realized it was probably one of the first times I said better and actually meant it. Wow, what an eye opening answer. At that specific moment I really and truly felt better. Now that I've been home a bit my answer probably would be more of an okay than a better but that's the way it goes. Okay is the usual answer when I'm asked how I am. Up and down is a way of life for me now. It's seems when I'm better I am able to live easier on my terms not the worlds. It still is very thought provoking for me when I say I am better and people think I am able to do all the things they want me to do. I can't, and I still have to let people down easy when they assume my better is some sort of availability to them. Sure I would love to meet everyone that wants to meet me for lunch or dinner but it just isn't possible anymore. Sometimes I wonder if my saying yes to everyone my whole life got me here. I know it didn't cause my disease but I'm sure it didn't help the process much. I have finally learned that I have to put myself first and everyone else second, with the exception of my immediate family because they will always come first.
When pain becomes a way of life it's the days that are better that you are able to see things clearer and grab for the stars. If I have a better day I want to do as many things as I possibly can on that day. The problem is when that happens it causes me to have more pain and fatigue and bad days to follow. It's such a vicious cycle like a wave going in and out at sea except your wave is a jumbled up mess. Illness comes in waves that you have no control over. Too bad treatments and living right can't fix it all. You have to learn how to do that in your head by not letting it eat you alive. The metal fight is harder than the physical. The perfect example from my perspective would be comparing it to a dental procedure I had done yesterday, another never ending problem for me. I had to laugh because I thought the pain was going to be bad because of how the produce went but to my surprise minimal pain. The more I thought about it I wondered if because my pain tolerance is so high I didn't really notice the pain like most people would have. I think my RA has made me much stronger mentally and physically. When I watch shows where men are freaking about about needles my first thought is, what a wimp. I think my disease has kind of hardened my heart even though I hate to admit that. When I hear people complain about some simple issue like a cold I secretly roll my eyes I have to pull back and remind myself for them it is hard. I've always been a very compassionate person but over time my disease has robbed some of that from me. It's sad really. I wonder if that comes from being so tired of fighting everyday that I just don't have the energy to expend anymore on too many others. Whatever it is it still makes my heart sad that I'm getting too tired to give that part of myself out to people anymore. Like I always say I do the best I can with what I have and if people don't understand anymore I can't do anything about it. I know my circle. The ones who's truly understand and care and because of them I am more blessed than I ever have been. Press on my friends! You got this! We got this! Don't let anyone or anything hold you back. Hopefully we all have better days where we can honestly have the answer better when we are asked how we are doing.
God Bless!
Dianne

Friday, June 23, 2017

Ever Changing World

Yesterday I made a quick run to the store for a few items. I'm making my dads Father's Day dinner this Sunday because we were so busy last weekend all we had time for was a quick visit. Authentic Hungarian cabbage rolls that I'm sure won't taste nearly as good as his mother's did but it's worth a try. Either way I'm sure he will love them. It's funny how when you get older you appreciate all the little things and you don't get so worked up about them like you use to. It's seems especially true since my dad was diagnosed with Lewy Body Demencia with Parkinson's symptoms. It's not easy watching him get worse as time goes on. If something as simple as some cabbage rolls will bring him joy then I'll do it. Time flies by and it's the one thing you can never get back so it's worth my time.

I rushed through the store and threw the few items i needed in my cart and rushed to the checkout. My energy was good so I decided to do the self checkout. Believe me there are many times I don't use self checkout because my energy is low and I just don't want to deal with it. I pulled my cart behind a older, like in his eighties, man. He was finishing paying so I figured it would be fast. I failed to see all the groceries he had at the end of the belt that needed to be bagged. I secretly thought to myself ugh he's moving S-L-O-W. I started to feel a little anxious and pulled myself back to the reality of, "What do you need to be in a rush for? Big deal so you have to stand in line three minutes longer." I stood there looking around watching people which I find fascinating in itself. The few extra minutes went fast and before I knew it was was punching in my mperks numbers and on my way. I was so focused on the screen I didn't see the older man approaching me. I grabbed my first item and turned to scan it and realized he was standing next to me. He smiled and said, "I just want to thank you for being patient while I packed my stuff. No one ever does that usually they are pushing my stuff out of the way so they can start their order." I told him, "You are fine, don't let people bother you." He thanked me again and left. Wow, Bam right upside the head. When I compared the thoughts I had when I first pulled up to the checkout to the thoughts I had when I left the checkout there was a stark difference. I thought about it most of the day yesterday. Realizing, as I do almost every time I am out in the world, the sadness of how we treat one another, young or old. The selfishness of everything we do. The ME first get out of my way attitudes that consume us. I realized I need to be more aware of my own selfishness in all the little things I do. 

The next step was comparing my illness to that of the older man. I know there are the times I'm parking or shopping or driving that I take much longer than I should. It made me realize I too probably piss people off much more than I think I do. It takes me longer to think and concentrate these days so there are the times I might sit at a green light before I hit the gas and get the beep from the car behind me. The busy people who can actually live a normal life and not have to think about health can be the cruelest. I usually have a few choice words when I get beeped at because I really don't care anymore if people can't understand what I deal with. When the older man approached me I realized he is no different than me. He deserves the compassion I and all people deserve. If there is one thing I wish I could do to change the world it would be for all of us to treat one another like we treat our friends. Obviously we can't treat everyone like we treat our family because who else would you die for? So let's stick with the friends. Being more patient. Being more kind. Realizing we are not at all alike and accepting that about each other.
Think it will ever happen? I don't know but I'm going to keep working on it.

God Bless!

Dianne

Thursday, June 8, 2017

Same ol' Same ol'

I don't run to my blog as much as I use to. I'd like to think it's because I am doing so well so there is no need to come here to write all my woes for the world to see. It's not. Mainly I think it is because I am so drop dead tired that the thought of processing enough words to explain what is going on is too overwhelming and exhausting in itself. I am trying to come to terms with the fact that this fatigue is something I am going to have to deal with, forever. That sure isn't very easy to accept and move on with.
My last appointment with my rheumatologist made that reality a little more real for me. My doctor told me that every patient has a fatigue baseline. Putting it in terms I can understand; this is it darling. You're at your baseline. Surly not the words I wanted to hear when he told me at my appointment before that the new medicine I am on may help with the fatigue. Of course I would be one of the lucky ones who gets no fatigue relief. Honestly, I can handle the pain but the fatigue is too much. I'm working on the acceptance of this. In the meantime it makes me very anxious and depressed. I try not to let this disease do that to me but I am human and there are the times I get knocked down just like the rest of the world when things don't go according to "My" plan. "My" plan, Ha. "My" plan is the joke in it all. "My" plan never works. If it did I would be cured by now. I try to do most things right on most days, no ones perfect. We all know that part is impossible. Although I do have a few friends who remind I am perfect, joking of course. Their laughter is what helps me keep it together.
Then there are the times I think that my own thinking is what brings me down. Always trying to be the best at everything only to be let down when I can't be. One example would be exercise. I have started walking more because we all know exercise is the cure to everything. Ha on that too. The only problem is I can go out for a walk with the mentality I am going to go for that thirty minute walk and after ten minutes I am weak or I can't breathe. Those are the times the fatigue and beating myself up hit hard. Wanting in my head to do it but my body pulling me down and making me go back in to rest. The acceptance that I am not like I use to be. It's funny how after years of this you would think it would get easier to accept that I can't do what I use to do. It only seems tougher to handle the longer times goes on. I almost feel like I am getting numb from trying to understand it all. I think when you deal with chronic conditions your brain overthinks everything. The why's, the how's, the reason's, the everything. Trying to shut it off is impossible because your body is always reminding you it's there. There are days it speaks louder than others but it's always there. I wish I could have the magic answers but they never seem to come. I'm sure this is something all of us deal with in our daily living whether it is medical issues or other issues we are slammed down with. The only thing I can do for myself is to continue to keep doing better. When I am home I do all things I like to do mixed in with a little housework here and there. On good days it's helping someone who needs help load their groceries in their car. Or a big smile for the McDonald's worker who hands me my luscious coffee as I have drool rolling down the sides of my mouth. Smiles are contagious you know because you'll always get one back, try it. I chose to always make it something for someone else. It helps take the focus off me and lifts my spirits knowing I can help someone when I can't help myself. I'm pretty sure the real world doesn't think like this because everyone is so busy. Maybe that's the force that drives me when I'm out there. Thankful I don't have to live that life even if illness has taken it from me. I feel so much more hyper sensitive to the negativity that goes on in the world. Maybe that comes from the loneliness I feel in this illness. The part where no one will understand. All I know is I will not allow the bitterness and anger in the outside world to eat me up. Keep pushing on to do better for others even when I won't gain a thing from it. Pushing on with the Same ol' same ol' life and doing the best I can with what I have been given. I wish the same for you.

God Bless!

Dianne

Friday, April 21, 2017

Is this Understandable

My reality hits me every time I change the sheets on my bed. It takes me so long to accomplish such a simple task that should be a wham bam job. In the past when I changed the sheets I would get worn out from my muscle weakness but now with the added shortness of breath the job seems even more monumental to me.
I am constantly reminded how we all take the simple things in life for granted. I imagine a healthy person my age competing with me in a bed changing contest. It always makes me laugh. The funny part is when I'm in a situation like changing the bedding my brain turns to humor, at least at some point in the job. But not before I get angry and start ranting internally. It brings back all the snarky comments asking, "How can you be home all day?" "What do you do all day?" "Oh you don't work?" All time me with an angry face ready to punch someone. By the way that is the best conversation killer of all, just tell someone you don't work and the looks and strange silence where there was conversation is hilarious. I hate to admit it but it almost brings me some odd sort of joy now when someone asks where I work or what I do and I blurt the, "Nothing," answer. Like I said that's my odd sort of humor. I don't understand why we are so wrapped up in titles. I have a title, wife, mom, grandma, daughter, friend to a select few. Proud of it too. I don't think my life is any less lived than most but its my life so...plus I need to be home for all the people who text me or call for therapy. Yup my life might be not be what everyone else thinks it should be but I get to tell everyone what I think about theirs. Who wouldn't love that? Fools. Haha
I laugh in the mornings too, at times. Those are the worst. I wake up many mornings and lay there. I mean literally lay there for a half hour, sometimes an hour, before I muster up the courage to get up. It's rough. No ones understands or see's that part of my life. Most people wonder why I don't work, I wonder why most of them wonder. Actually, I wonder how most of them can. I have no choice. It's painful to say the least. I dream of it but then am slammed with the reality that it takes me 3-4 hours to wash and change my bedding. Now add to that the rest of life, keeping up a home. If I worked all the extra money I made would go to a housekeeper, chef, finding someone to shop for me, etc. Being chronically ill sort of makes all those things your job. Oh, and along with that taking care of yourself thing which takes center stage when you are sick. Life is all about that. Sadly. Believe me you don't want it to be but you have no control over it as hard as you try it's always there.
Yes, I'm on medications that help but they don't cure. Whenever the words come out of my mouth that I am feeling better it seems I eventually get slammed back down. It's like one big circle jerk of fun let me tell you. I try to rationalize it all in my head, making my life matter like everyone's does. I sat down to write this as soon as I got done putting the fitted sheet on the bed still huffing and puffing, still chuckling to myself a little while my reality also brought tears to my eyes. Fair? Nope. But it is what it is. We all have our stuff. I think dealing with our stuff and realizing we all matter no matter how insignificant we think our life may be is the most important gift we can give ourselves.
There goes the dryer, time to get the blankets on the bed and either laugh or cry, who knows. Take it as it comes and enjoy the ride.

God Bless!

Dianne

Saturday, December 3, 2016

Things Are Spinning Out Of Control

It's been a while but I've been too busy surviving to write in my blog. The cold weather hit here and the last few weeks have been brutal. The extreme cold has affected my breathing making it hard to get around. I've felt like I can't get enough air in my lungs for a while now but when this bitter cold hit the issue only became worse. Besides the fact that the exhaustion caused by this has been unexplainable. I have been using my inhalers but I am also very stubborn when it comes to using them. It's some odd sort of game I play with myself. If I don't use my albuterol when I need it and I ignore the symptoms it's like my head thinks this will all go away. It's almost like I think I'm in control if I don't use the inhaler. I fight this all the time. I'm sure it is still the denial of the disease. How can ignoring something like not being able to breathe make it go away? When I think about it or write about it it sounds absolutely absurd. I'm no idiot I know it's there. It feels like I'm banging my head up against the wall over and over trying to deal with all of this. I saw my pulmonologist the other day and we decided to add another inhaler, which by the way doesn't sit well in my head. It's been three days since I started it and I feel like I am getting air deeper in my lungs already. My fatigue was much better the past few days but I guess getting air in yours lungs will do that? The doctor also suggested doing thirty minutes of exercise daily to strengthen my lungs which in turn will make it easier to breathe and help my lungs to work better. I'm committing myself to this in hopes that I won't need as many inhalers in the future. This new inhaler is a trial run anyways. I'm on it now to see if it helps then I will go off it to see if my symptoms return. Making the commitment to exercise daily isn't easy when your energy is at an all time low but I am truly serious about sticking to this. Instead of using my extreme fatigue as an excuse I'm going to push through it and do the exercise no matter what. If I continue to make excuses I continue to be stuck on the same path. I've been working on losing weight since July and have lost over twenty pounds. Yay for me! It isn't easy but it's possible. When I started twenty pounds seemed miles away but looking back it wasn't that bad. Once I started my cravings for junk subsided and it did get easier. I also realized even more how much of a emotional eater I am. Stressed? Eat some junk that will help. Of course it never did the stress was still there and my ass just grew a little more. I will continue on this path too. Less weight equals less pressure on the joints especially my knees, ankles, and feet. Three joint areas that have been painful and troublesome for a while now. I am having a stress test next week and after that I will start on the Humira for the joint pain hoping to lessen that. If I can get that under control along with being able to breathe better I'm hopeful my daily living will become easier and I'm sure more enjoyable. Feeling the way I have been doesn't leave me much energy to give out to others. I'm stuck in a place that is not me at all. I feel like I'm in a valley at the bottom of a very tall mountain looking up at the light on the top of the mountain. It looks like a long haul to the top but the rope with the hook are there for me to grab onto and start pulling myself back up. I started a exercise/weight journal so I can record my progress. I'm not going to beat myself up when I don't accomplish what I should. I'll do the best I can and pat myself on the back with any progress I make. Any positive changes or thoughts I have I will write down. You don't realize the changes in your daily life until you write them down and reflect back on the collection of notes you wrote. I will also keep track of any and all symptoms I experience so I can see if there are improvements or set backs over time. I will keep track of negative thoughts that might try to throw me off course and when the negatives thoughts come I'll replace them with the positives. This isn't a New Years resolution, I hate those, just a time for me to reflect on the progress or the set backs I encountere on my way to not only health improvements but self improvements. Push on my friends and let the games begin!


God Bless!

Dianne



Saturday, November 19, 2016

The Waiting Game

I've said it before and I'm not going to lie. I'm tired. The past few weeks the realization became even more real as I had to work on getting a new prescription filled. It's bad enough when being tired, not a normal persons tired, Living your simple life wears you down but adding to it with the nonsense of getting a script filled is not warmly welcomed. I am starting on a biologic medication that is very expensive. When I say expensive I'm not taking a few hundred dollars but thousands of dollars a month. First I needed to have a lab test to make sure I didn't have TB or any TB laying dormant in my system. Passed that one with flying colors. It seems that was the easiest step in all of this stressful decision. Next, insurance approval.  Oh boy here we go. Doc sent information for approval and I heard nothing. I'm not the kind to call my docs and be a pest. If there's one thing I've learned over the years it is when it comes to anything medical patience is key. The week came and went and in that time I heard from the Humira nurse who will be helping me with my injections and will help me with all the issues and answer any questions I might have through this beginning process. She suggested I call my doctor and see what is going on, so I did. They had sent in the info and said they would resend everything directly to my insurance carrier once again. I patiently waited another week and my Humira nurse said call the insurance carrier again. This time I had been approved but I had to go through a specialty pharmacy because of this specific drug. I was told to call them. The new specialty pharmacy took more information and said they had to call my insurance company to double check I was approved and then call my doctor for the actual script. Call back in a few days and we will let you know what is going on. Call back, still no answer from doc on script. This was Friday, two and a half weeks later I am still waiting. It's fine like I said I've learned to be patient. The worst part is the whole time thoughts running in and out of my head like, "Is this a sign I shouldn't be going on this drug?" "Do I really want to do this I mean really I can keep going on and off prednisone for the rest of my life when I flare." "The cost oh my gosh what is the insurance going to cover?" "Is the company really going to help pay for this like they said they are?" "We can't afford treatments like this." "I don't work to contribute so more money going out the door for medicine." On and on and on. I don't think the thoughts have stopped much since I decided to try this new drug. On the flip side I'm trying to keep the voice of my doctor telling me this will be it, the treatment that will make it better, with that I think it will be worth it. I'm pretty sure to most people all of this is not a big deal. It's hard to express how it is when it takes every ounce of energy you have to survive on a daily basis. I don't want to deal with this. Illness is a full time job in itself and dealing with simple little things like this wear on you physically and emotionally. I'm pretty sure this all contributes to the, "I don't care," attitude I've been dealing with lately. I constantly have the inner battle going on between giving up and fighting tooth and nail. When I look around me, in the end, I realize giving up is not an option. Fight I will. I might be tired but I'm not dead. I'm here for a reason even on the days I can't figure out why, which is most. When I think I can't do it anymore I realize I can. Life is different for me now. I've learned how to take it for what it is, at least right now.  A bad day means I'm laying low and a good day means I'm doing way more than I should all the while knowing I'll pay for it later. I realize now it's all up to me. Even though have support this is my illness and no one else's. I'm the one whose understands it to the best of my ability. It's all in my decisions. I'll keep fighting While I'm waiting.

God Bless!

Dianne

Wednesday, November 9, 2016

The Lie of Strength

I read this the other day and it resignated with my heart:
"We tell people they are strong when we are uncomfortable with their pain and would prefer that they would shut up and not bother us with it. To say, "but you are strong" is telling someone, "I don't think you should feel that way," and it's not a compliment. I don't think that strength means being invulnerable, or pretending that you are. The belief that silence and stoicism are inherently good qualities is how you end up dressed like a bat punching criminals in an alley - it's not a good road to emotional health.
I think your father has handed you a raw deal and that caused you and your family grief and pain and distress, and all of that stuff is real. You don't owe it to your friends to be the "strong" one. Just because you have always been the good listener and the shoulder to cry on, doesn't mean you have to maintain that role when you need a good listener or a shoulder to cry on.
Be sad. Be angry. Let your heart break - in the diner, on someone's futon, in the park, on the way to the zoo, at brunch, over drinks, in the therapists office, on the bus - wherever it breaks, let it break all the way open, let it run out and down and spread out in a soggy puddle at your feet. Say, I'm sorry, I can't listen to you today, my heart is broken. Will you sit with me a while and I'll tell you about it?"
Your friends may get scared when you do this. If you, the "strong" one can break, what does that say about them? That's why they push back at you and try to remind you and try to remind you of your strength, when what you need is for them to stand by you in your pain and weakness. They don't have to solve that pain,  gthey just have to bear witness to it. Maybe they don't know how - a lot of people don't  know what to do in the face of other people's pain. They want to fix everything, and if they can't fix it they feel inadequate. As the "strong" one you can help them out with this by saying, You don't have to fix it. You don't have to do anything. Just be with me, just listen, and love me, and I'll love you back. That's all I need - to know that you love me, even when sad and scared and don't know  what to do next."
To ask for help is strength.
To admit you don't know is strength.

To tell the truth about what's happening is strength.
To be imperfect and to trust that imperfect people will love you despite imperfections (albeit imperfectly) is strength.
To let people you love see how you really feel  - without trying to hide or stage manage their perception of you - is strength." - from The Lie of Strength.

Wow that sure is a mouthful. I have read this over and over and still struggle with it. I've always been the one there for everyone which in turn has made it extremely hard for me to let people in. I know I am open on my blog but I am complete opposite in real life. I wish I could change this and I am working on it but it isn't easy. It takes a lot of strength for me to write that. Where does strength come from? I wonder about that a lot. I don't have the answer most of the time but for some reason I do have the strength to go on and try to live a somewhat normal life given all the opsticlcles.
There are those who find strength from God or strength in other people or...insert where you find strength here______.  This question can be answered differently by everyone especially those who deal with chronic illness.
I truly believe that my strength comes from a combination of all. God and people for sure but when I really think about it, it is up to me. After all these years I have come to realize it has to be me. I can and do rely on God and people but I am the one who knows how this feels. I'm the one who knows what it's like to get up and force myself to get moving on the days I really don't want to. I'm the one who knows how it is to keep my head directed in the right direction when I want to bury it in the sand. I'm the one in all the suffering who must choose to get up every morning and give the little extra bits of myself to others. Those are the little bits that bring me hope.

The next step in my journey is starting a biologic for my arthritis. Over the past week I have looked back more than I care to and wonder how I got here. I have failed on medications either because the side effects were horrendous or the fact that the treatment didn't help. I'm am nervous and anxious about starting this new and very expensive drug. The what ifs are playing over and over in my head like moments in my life I wish I could delete. On the other hand I am hopeful on starting a drug that according to my Rheumetologist will help get me over the edge and move me to much less pain. I am hoping the side effects don't affect to me. Strength. I need it all the time but especially now. Hanging onto hope as always, are you?

God Bless!

Dianne