Thursday, November 16, 2017

Chronic Marriage

It's fall if that's what you want to call it this year. This year it seemed like summer until the end of October and rain non stop since. Our favorite time of the year around here. Hunting and walking in the woods without dying of heat stroke and actually being able to breath to some degree. It's also a time Rich takes a few days off from work not only to hunt but to clean. You know do all the things I hate doing one being washing windows. I always say, "What does it matter anyway they just get dirty again anyway." Today before he went outside to do the windows he said, "When I get done with this I'm going to clean the floors." My eyes popped out of my head and of course my mouth opened, "Oh no you're not." We argued on the subject for a few minutes and he went outside. Immediately I got all my stuff out and started doing the floors. That's my territory. It's funny how we both look at that so differently. He looks at it from the standpoint that I shouldn't be doing it because of my breathing anf other issues. I look at it as he's taking away my jobs. The things that give me meaning. Sounds silly doesn't it? Even as I write that I have to chuckle. To all the fairly healthy people who look at cleaning their floors as an inconvenience. It's Mount Everest for me. I know people are thinking wow how lucky you are to have a man who wants to do it. If that's what you are thinking you are completely missing my point. It has nothing to do with that because believe me I appreciate everything he does for me. The basic point is that when you are sick and people try to do all the things you use to do it is mentally and emotionally hard to have those things taken from you. The word worthless comes to mind every time he so innocently tries to do the things I have always done. I don't want to give up anymore than I already have. Chronic marriage is just that chronic. The illness doesn't go away. In fact Rich is the only one who truly knows. Example this morning. I laid on the couch until almost noon trying to get enough energy to get dressed. Yes, that is chronic illness, our chronic marriage. He has to not only put up with things like that but my bitchy moods when I feel like crap. My snapping at him for nothing at all. Oh wait that marriage. I know, minus the illness, there are so many things and times I annoy the hell out of him too. But it's ok because this IS forever, our forever. In sickness and health. We both took that one serious but he gets to show and live it daily.
I honestly never would have thought about this because it's just our way of life, until last week when someone made a comment to Rich that I don't want to repeat. It made me think about all the shallow ignorant people who have no filter when it comes to illness. The more I thought about it the more I realized it may or may not be stupidity but just that some people have never experienced the chronic part of illness. We all have illness affect us in one way or another but until it happens to you or someone you actually live with you have no idea so it may be a better option to say nothing. Try to care about the person and what they live with. I wish people could ask Rich how he is doing in all this. It seems nobody does. Caring should come before ignorance in any situation regardless. It's actually quite simple. I don't have much more to add to that.

Writing this helps me to move on from comments like that. It helps me to write it here and wipe it out of my head. It helps me to look through clean windows and see the man I love out there on the ladder doing what he does best, taking care of me. I am thankful for that everyday!

God Bless!


Thursday, November 9, 2017

Changes are in the Air

Well, Hello there. It's been a while. How've you been? I have purposely stayed away from here for reasons too many to write about. I cranked up the Pink Floyd and my creative mind decided to run the gamut on all I've been through over the years. I try not to go back too far because then it puts me in the negative place of asking all the why questions and being a person who hates negativity I stopped the crazy. I in turn whittled it down to the last two years, which then became the last year, give or take a month or six. Its been a rough summer to say the least or maybe more like a rough year but shortening it to summer sounds less stressful and painful, at least to me. It always amazes me how much my mind controls when it comes to pain. When I'm in it there are times it is excruciating and there the times it's doable and other times it's not, but I still believe the mind controls what we tell ourselves and after the painful times are done I can always convince myself, "It wasn't that bad." Plus I made it through to the other side of it." In the end that's all that matters.

It will be a year on January 3, 2017 since I started a new RA biologic drug called Humira. Yes, I know the actual and and I capitalized it since I had high hopes when I started it. Especially since I would see the commercials of people on the drug who where flying around on merry go rounds and had roses and kisses coming out of their asses. It was going to be the answer to all my pain and my life would be "normal" again, at least my normal. Funny, because my normal has been anything but for a long time. The joint pain, fatigue, answelling has controlled my life long enough. I thought, or at least hoped, after I started the Humira things would change but that's when the side effects took center stage, always an issue for me the side effects. Ugh. Humira does not play well with asthma/copd. My breathing became so bad I could hardly do anything without having to use my rescue inhaler, this on top of two other inhalers I was on. I called my rheumetologist and he said if this continued we would have to try a different biologic. The problem was just after that call I got a letter he was leaving and moving north, far north. Talk about a stab in the heart. I really connected with him and he was such a help to me over the few years. I was heartbroken. Now what? Over the years he had been my second rheumatologist and now I had to find another? I know it doesn't sound like a big deal but believe me it is. With all our complex medical issues we need a doctor who looks at us as a whole and finding one you mesh with can be difficult. In the meantime I stayed on the Humira and found a new rheumatologist. I have had three appointments witch him and I feel we are getting to that comfortable place with each other. I really like him and he listens to me and answers all my questions. Three months ago we switched to Embrel and wow what a difference with my breathing. I am off one inhaler and have been able to cut way back on the rescue inhaler. This is huge for me. You cannot imagine how exhausting it is not to be able to get air in your lungs it's unexplainable. All I know is I feel better and that's all that matters to me.

One other huge change is the level of pain I was experiencing. He gave me another cortisone shot in my knew three months ago when I saw him and the night time knee pain has significantly improved. This week was a cortisone shot in my hip for bursitis. I'm waiting for that to help more but it is an improvement during the day. Sleep can be hard when you are in pain. No sleep equals bad days for sure. The Embrel seems to be taking effect too because I am beginning to feel better as a whole. I woke up a few days this week and thought to myself. "I feel good." I cannot tell you the last time I have woke up thinking that. Fatigue and feeling sick all the time are just a couple of the symptoms of RA. I know people think it is just joint pain but it is so much more. It is a whole body issue. I could on with all the symptoms but why bore you with all that. I hope you get the point. The most importantly being if someone you know is ill please just believe them. I honestly don't know how anyone could make all this up. Have compassion, that's all. Like they say until it happens to you, you will never understand. True in all illness.

Changes are in the air and not just with the weather. I can feel changes coming on. I'm going to stay focused on that positive and not allow myself to look backwards too much and if I do I'm going to remember how far I have come in the past few months. According to my doctors the biologics can take up to a year to fully work so from here on out it can only get better. That being said I still have to take it slow. Pacing myself is how I get through all of this. It's so easy when you have a ok day to over do it only to pay for it for the next two or three days. I'm learning, slowly but surely but learning none the less. I only hope the same for you.

God Bless!


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!

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!


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!


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 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!