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!