Pain Fog

Every day I think about things I should be blogging about. They are so random and come into my little bird-brain yet when I come to WordPress to share them with the world, they’re gone. Where do they go?brainfog

 

Where does my brain go when I walk somewhere as close as the other side of the bedroom? I get there, assuming I had a reason for coming, and it’s gone. I have no clue. So I do what any logical person would do, I start looking for whatever it is that got me there in the first place. And so begins a treasure hunt. I am searching through random stuff in an area of the room for, what the hell am I here for???? And I need not mention the number of times I get sidetracked in my hunt for what I am doing in the first place. How do you get side tracked from being side tracked from, again, what the hell am I here for?

 

I used to play it off and grab something and go back to my seat with whatever treasure it was I frantically found. Now, it happens so much that a continued golden globe actress performance only makes me look like a forgetful crack-head.

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We’ve all had times like this. Not everyone can blame a disease or constant pain so at least, I do have a culprit.  But just how far will this fogginess go? What can I do about it? If I found a workaround, would I even remember what it was? Probably not.

 

 

 

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It’s an evil cycle because you are self-aware that you aren’t at the top of your game when you’re off. You are self-aware but you don’t want anyone else to notice. Trying to hide it only makes it worse and throws you further off track. See,  I have noticed that If I stay focused, at least half of the time, I can work it out in my head without being noticed. However, if I forget and then get nervous that I have done so, I seemingly throw myself into a loop.

 

Why do I care what anyone else thinks? Should it really matter? I mean, I am at home in my own house. These people should understand. Right? Wrong, I care because I don’t want anyone to know just how maddening this disease is for me at times. I don’t want to be a burden on anyone. I need to be the one that harbors all of the pain and worry, not my family.

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Having a disability leaves you feeling very lonely. This is why so many of us turn to blogging.  We want to be heard. We want to see if anyone else is dealing with the same struggles. We want to know these things, but we don’t want to be found out. We don’t want anyone’s pity. We want someone to hear our cry for help even though we are too proud to cry. We want spoons. Extra spoons. (Google it if you don’t know) We want to know that we aren’t the only people on this Earth who feel the need to silently cry for help, while also knowing there is nothing that can be done. We just have to be strong and carry on.  And we do. We keep on keeping on because if there is one thing we all agree on, it’s that we are strong beyond our own realization. We tread through life that would exhaust those who don’t know what true tiredness is.

Nothing New to Report

I must admit, I have a fairly boring life. I haven’t blogged much because there just hasn’t been a whole lot of interesting stuff going on in my life. I’ve been adulting, which is boring. The part of adulting that sucks the worst for me is that I am adulting far beyond my age. I hurt from old Arthur like someone at least twice my age.

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Guess what. I wrote last year about our birth month. It is just around the corner again now. Only this time Brady will be 16 and all of my worries will multiply. It is so scary sending your teenaged son out into the world with his own set of car keys. Possibly, the scariest part of parenthood. Here’s their freedom, to some extent, will they make good decisions? Did you do your part for him to know and do better? How will this unfold? Not to mention the thought of your baby flipped over somewhere on the side of the road because he hasn’t answered the phone.

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We’ve all done it. We’ve all came tenfold on the annoying things our parents used to say to us. Just last night I uttered the words “if you lock that door again, I’m going to take it off the hinges.” “What if the house caught on fire?” I internally giggle because I know I was told this more than once in my life. My father has some sort of fear of things going up in flames. Every house my sister or I have moved into has to pass the fire alarm inspection at his first visit. And if it doesn’t, you’re going to hear about it at least weekly until it is ratified.

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I don’t know if it is just my body, but you would think cold weather would be much harsher on an RA, MCTD, problem-ridden body.  I hurt far worse during the summertime.  I’m not sure if it is the rain, the heat, the humidity, or a combination of them all. I just know that it isn’t fun. And I am not able to go do all of the fun summertime things because the sun is NOT my friend.

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I think I have always held a deep hatred for heat. I can put on more clothes to keep warm in the winter than I can take off to keep cool in the summer. My body sure tries to take things off though. I melt. I sweat, I stink, and most of all, I’m miserable.

 

I am hopeful that I will start blogging more. I can’t make any promises though. I just don’t have a whole lot new and interesting going on and unlike most people, I am hibernating for the summer. I am binge watching whatever I can find. I am working as much as I can. I am adulting. Are we having fun yet?

What They Don’t Tell You

As a person who suffers from chronic illness, I am finding I miss things I swore I hated.214460-I-Miss-You-Pig-Time

I swore I hated cooking.  Sure, it is nice to have a home-cooked meal and it is an amazing feeling when you are the genius who concocted a delicious masterpiece the times you got it more than right.  But let’s face it, there are times we all bomb out and knowing you just poured your blood, sweat, and tears into the yucky meal you are all but forcing yourself and your family to eat is a miserable, embarrassing feat. Not only did you work your butt off for it, you now have to eat it and clean up the mess. There are times there are so many leftovers but you know there is no sense in putting off disposing of it by putting them in the refrigerator.

I thought I hated it, but I would soon come to realize I didn’t. I still don’t like cooking because of the reasons mentioned above. However, I wouldn’t have quit trying if I had the choice.  I still cook but it is a rare occurrence.  I don’t have it in me to churn out a meat and three 5 to 6 days a week. Now, I’m lucky if I do this one day a week. ff5ad80873f9181d287eaebbd4b7d9b6

I still eat and my weight is the most obvious verification of this. But I don’t eat as healthy and I don’t enjoy it the way I used to. My grandmother was the best cook to ever walk the face of this planet. I do believe that in some of my dishes her talent was obviously passed down. However, unlike me, I can’t recall her ever producing a bad meal.

 

I hated cleaning. I still hate cleaning. But what I hate even worse is not being able to keep my house as tidy as I should be able to. Even asking the kids to pitch in doesn’t suffice in this area. Kids cut corners. I know this to be true because I once was a kid, even though that seems like a gazillion years ago.  My house is a perfect example of it not being done the right way, also know as my way. I-Miss-Myself-simple-title-graphic

 

Your house is supposed to be an example of you. If my house is an example of me, well, I am very unorganized. It isn’t at all nasty or anything. I don’t have a bug problem or things growing from uncleaned spills or dishes. I have a home that looks “lived in”. And there is a whole lot of living going on in my house. However, silently, I am not living the way I want to or how I envisioned. Nobody wants to hurt. Nobody wants to be sick. Nobody.

 

I have always thoroughly enjoyed a good shopping trip. Now, I dread a simple trip to the grocery store. I despise going Christmas shopping. I despise going shopping for anything. Even if I have plenty of money to spend, the drain it puts on my body is something with no monetary value.

Speaking of Christmas or any other holiday, this too is an area I don’t particularly enjoy any longer. This is probably the hardest thing to have to admit. Christmas had always been my favorite time of year. It is supposed to be a cheerful occasion. Now it means several shopping trips are needed. Decorating the house is needed which also means taking the decorations down is in the near future. Cooking is needed as well as the trip to the store to get the correct goods followed by another trip to get the things you forgot. youdontkno_ivpyrEDR

I used to put up so many decorations it looked like Santa threw up all over my house. I have Santa figurines I have collected since I was a kid and they are usually spread throughout the house. I even had a tree in the kid’s bedrooms and plenty of decorations to decorate them all. This year instead of dragging all of my prized decorations out, I went to Walmart and bought a few jumbo packs of decorations and put them on the tree. Not a single Santa was displayed from my collection.

 

viciouscycleAnd here is the thing that sucks the most about what they don’t tell you you’re going to miss: The knowledge that you have of things not being the way you want them or think they should be. The house isn’t cleaned the way I should be able to do it. The dinner isn’t healthy and doesn’t taste as good as it would if I had cooked it. The holiday wasn’t as exciting as it could’ve been if I had been able to accomplish what I once could. It is all MY FAULT. I can’t blame it on a single other person and there is nothing I can do to fix it either. It is a vicious cycle.  A cycle that doesn’t seem to be breakable. And one that makes you look like a lazy person who doesn’t care enough about these things. And to keep from looking even worse or like you are blaming your disease on every missing aspect of your life, you just accept fault. You are defeated.

Saying Goodbye

thThe past few weeks have been an emotional roller coaster. It started with Brady getting the flu, strain A to be exact. My boy was sick. He told me it was the sickest he’s ever been. Coming from him, that is a large statement.Flu-Season

He’s been in and out of hospitals his entire life with his asthma. He’s encountered many different types of sick.

We Lysol’d and Lysol’d every nook and cranny but I still fell ill about the time he became well. Not long after that, Bryant joined the “down for the count” club. Bryant was followed by Christian, who was followed by Haven.

I believe we finally got rid of the flu, but not without a loss. You see, in one of my sickest points Piper (see My Best Friends) was begging to go outside. When Piper begs she is very mouthy about it. In fact, I don’t think I have ever owned a dog that talked to me like she does. So I let her out and returned to bed where I then fell asleep. Forgetting Piper was out, she ran off.

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Piper

I awoke to a phone call from a neighbor asking if that was Piper on the side of the road down from my house. My heart stopped for a minute. I remembered Piper wasn’t inside. I instructed Christian to go down the road and see if it was Piper. Sure enough, my girl had met her demise. Her lifeless body lie dead on the side of the road. My best friend. I let her down. wonceinalifetimedog

No words can explain the somber of losing a dog. It is so hard. It affects everyone in the house, including my other two best friends who still haven’t figured out where Piper has gone. They only know that their Mom is sad and their friend is absent.

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Sometimes you get on a roll in life. Be it a good run of bad luck, or good. I seem to have been on the later of the two. Not to be outdone, Brady’s great grandaddy passed away last week. A mere few days after the loss of Piper, we lost a wonderful, influential man from our lives.

Grandaddy (we dropped the great because it’s easier that way) and Brady had a special bond like no other. I’m not a grandparent yet, and I hope it is a LONG time before I am, but I do know that whether they want to admit it or not, grandparents have their favorites. Brady was his. No doubt about it. He talked to grandaddy on the phone more than anyone else in his life. Almost daily. When school events didn’t get in the way he spent nearly every weekend with Grandaddy. They always had some chore that needed to be done, and I think Brady found it fun to play around the farm with Grandaddy.

Brady

Charles, Brady’s great grandaddy, was Brady’s dad’s grandaddy. So you would think that because he and I are no longer together, his Grandaddy and I had become distant. Not the case here. The man was so loving and so great with Brady. Until this year, you could count the number of sporting events he had missed of Brady’s on one hand. Rain or shine, he was there to see his boy.

What the worst part of this is, Brady was sick with the flu for a little over a week and couldn’t go see him and risk giving it to him. When he got over the flu he had several basketball games. His grandmamma called two nights before his passing and asked if I could get Brady to call her. She said Grandaddy was asking to see Brady. The plan was that the next day she would come get him and take him to the nursing home to see him.

The time came for Brady to leave and he got a call from his Grandmomma. The doctor wanted to speak to the family, the trip to see him would have to be postponed another day. It was that day that Great Grandaddy was called up. Brady never got to tell him goodbye.

I checked him out of school and had to deliver the bad news. My strong boy didn’t cry. His face was red and the tears filled his eyes, but he didn’t cry. I told him, “son, I know you are upset, and that’s okay, you should be.” “But son, you don’t have to be ashamed to cry, especially not in front of me,” I told him that holding things in would cause you to go crazy.

And so the tears fell and fell. We got home and he went to his room and locked the door and sobbed. His grandmamma came to get him. He stayed there at his great grandaddy’s until yesterday.

The funeral was Saturday and of course, I went. Thank goodness the flu was about a day behind me and I was able to go. Because Brady needed me. He was not okay. It is a strange feeling to be in a church full of the family of my ex but their family is so loving and so accepting of all. I received many hugs and “so good to see you’s”.

The time came to close the casket and begin the Funeral part of the funeral. Brady nearly had to be pried away from his grandaddy’s casket. He didn’t want to say goodbye. My heart broke because there was nothing I could do to make it better. Nothing at all. And I have never seen my boy this upset. Never! A mom wants nothing but happiness for her kids. She wants nothing more than to make things better, but this is an instance where that cannot be done.

Great-grandaddy taught my son so much about life and how to be a man. And he did a dang good job of it. The world lost a truly wonderful man. We will all miss him dearly. But I am so glad Brady has so many great memories and lessons learned from him that he can carry through the rest of his life. I am blessed to have had such a wonderful man be a part of my son’s life for so long. If I could tell him how thankful I am for him and all that he did, I would.

One thingtumblr_m8ex8s1RSk1r7zepzo1_400 I wish I could say goodbye to is all of this pain I am feeling constantly. It is getting old. I wish I could have just one good day. It doesn’t seem like an attainable wish.

Bitter Cold Break

I have been on a small hiatus from writing on the blog lately.  I have fussed about this before, but maybe it bears mentioning again.

 

My insurance policy I had last year decided they no longer would cover my Methotrexate in November. I was also still dealing with the broken foot which is, quite possibly, the most painful injury I have endured in my life. youknow19

 

I have also complained a great deal about the side effects of Methotrexate and I promise you now, I will NEVER do that again. You see, you don’t realize the extent that a medication is helping until you abruptly quit taking it and your disease kicks into high-gear. No, Methotrexate is certainly not a walk in the park, but MCTD and RA mixed with mending bones and the wonderful winter we’re having this year are far worse than a Methotrexate hang-over (for lack of a better word).

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In Alabama, where I live, it is extremely rare to see snow. We have no idea how to handle snow here and our entire state shuts down at the mention of it. So for it to have snowed twice in one year is kind of a big deal. Years ago, I would’ve loved it. It’s exciting to experience snow when you aren’t accustomed to it. But when your bones ache all over on good days and alarmingly alert you of unstable air outside on not-so-good days, they darn near give up on snow days.

 

Another problem which I still haven’t found a resolution to is cold feet. I have written about this before. I am so determined to find a good solution to this problem but I am starting to feel deFEETed. I know that isn’t how you spell that.

 

My feet will be cold for so long that they pure hurt. And then when I have finally found the perfect combination of cover, sock, heating pad, and position to warm them they quickly go from Jack Frost to Satan’s den. There is no in between.

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The morning of the last snow day we had I awoke thinking I may be running a fever. I thought this because I couldn’t get warm. I couldn’t get warm because our heater decided to take the day off. Not only was it not heating, it was blowing cold air. I think it took the better part of the week for my body to warm up from that problem. Luckily, my husband is friends with the local AC/Heater repair guy.

 

I couldn’t tell you the technical name for the thing-a-ma-do-hicky that is broken on our heater, but I can tell you that it works intermittently now and that if I want to fix this it’ll cost around $500.00. Considering the fact that in Alabama we typically need heat at night and air conditioning during the day and that it still works some of the time, I can not justify that expense right now. If it ain’t broke (completely), it doesn’t need fixin’ right?

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With all of this being said, I have had a lot more going on this winter which I will save for another post since they have been few and far between.

 

My son has the flu so I am off to spray some more Lysol. Ya’ll pray that we keep it from spreading to the rest of the family and pray that he gets well soon.  He says he’s never been this sick in his life and coming from him, that speaks volumes!

 

Writer’s Block

I will make this short and sweet. I haven’t blogged much this month. It has been an eventful month, but not much to talk about.

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You may have noticed my last blog was a rant. I’ll be the first to say that it wasn’t even a grammatically correct rant. I was pissed. I still am, but I have calmed down just a hair. I’m not sure if it is because time has passed since I wrote that post or if it is because my GP felt the need to up my Zoloft to 100mg a day. Whichever the case, I’m tired of fussing with it. It does absolutely no good.

It is starting to look like that is all I do when I blog. I fuss, I post about pain, I post about being sad, mad, hurt, etc. I know that gets old for my readers to read over and over and over again.

 

I’m very sorry if my meltdowns, rants, wines, and for the most part, saying what I wanna say out loud but cant offends you. I’m sorry if it is hard to read. You should try living it. I’m just saying.

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I should add in here that another reason, aside from my broken foot, football season, and dealing with doctors and insurance and mixed connective tissue disease, is because it’s also TV SEASON!!! All kinds of new, GOOD, shows are coming on. Along with the returning greats that we spend the offseason wishing was on.

 

Here is a list of my all-time favorites:

 

Grey’s Anatomy

The Walking Dead

The Talking Dead

This is Us

Law & Order SVU

Chicago Fire

Chicago PD

Once Upon a Time

Vikings — which I hope is soon coming on even though with Ragnar gone it will never be the same

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But let me let you in on a secret show I found which I absolutely LOVE!33497f8ffe9b554ee4ae1d693b4b15ee--season--fangirl

 

It’s called Offspring. It is about a woman who is an obstetrician in Australia. She has a sister and a brother, both trying to find their way in the world since they didn’t do the college thing,  Nina is her name, She is trying to find love. She is married to a man who is creepily obsessed with her, And then her Mom’s house is a madhouse at all times. Her father knocked up a nurse that works with Nina and her parents are still married, but it appears to be an off again, on again sort of thing.

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I would love to tell you it is a nice family oriented show like Parenthood or This is Us because it is. BUT (and this is a huge but) there are some very adult words and a good bit of sex that goes on. It is a great show to watch when your kids are away or paying no good attention to what you are watching. You can thank me later if you try to watch this show, I would have to say it took me the entire first season to decide if this was my new go to show. And by the end of season 1, you are hooked. Hooked to the point that you are dedicated ONLY to watching all 7 seasons. I finished them in about a week.  And now I want more, and I want it NOW!b41252aed7d3ed8084361b7583fec174

 

My Ambien is finally starting to kick in and I have spent much of the end of this post to stop and backspace my typo’s out. So what I will do here is save what I have written, add photos tomorrow. and proofread it before I post. I do this often so that I can make sure I make sense anymore.

Health “Care” Don’t CARE

insurancelottoThis is going to be a rant and for those who don’t agree with my views here can just keep the little opinions to themselves. Unless you have a way to combat the situation I am in, don’t tell me I am wrong about the way I view insurance in this country and my states ability to figure the stuff out. I am not, nor will I ever be, a politician.

 

Here’s the thing. Obama “Care”, in theory, is okay I suppose. But it lacks all of the loopholes and what-ifs criteria or knowledge to keep it going or to have ever been rolled out in the first place. Sure, we all want free healthcare. Who doesn’t want free stuff? Here’s the thing. I don’t care how bad you are at Math, free doesn’t add up any kind of way when you are talking about healthcare. NONE!!  People need to understand that if there is something they are getting for free, it’s only free to them because somewhere someone is working their butts off to pay for it. That may be in the form of taxes, donations, or just anything else you can think of that one would use to fund programs which help sick people.  But it isn’t free.

 

So in my fine state of Alabama, the Republicans fought the whole Obamacare thing tooth and nail and they won. But still, its people lost.  We lose every day.  The Alabama Republican party said they won’t raise Medicaid to cover the ones living in poverty. No, in fact, they would like to take more away from Medicaid and Medicare. But they think that by us not expanding our Medicaid then we aren’t on the Obama”Care” bandwagon.

 

That would be fine and dandy you would think. But no, instead it is worse. Worse than worse. Worse than most other states in these United States of America. Let me tell you what the insurance company does.

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So Blue Cross says their rates are going to skyrocket because of Obama “care” and because of all of the preventative services that they are now going to have to cover free of charge. Not only will your rates go up, but so will your deductible and out of pocket costs.

 

Here is a breakdown of how this goes down and you tell me that it shouldn’t be illegal to do people this way and I will tell you what I think about you.

 

My BCBS Bronze level Family plan which is provided to me through my husband’s employer who pays an estimated $800/month for the premium doesn’t cover diddly squat. Nothing, I mean NOTHING, is free. Not even preventative. Last time I checked, colonoscopy’s were preventative procedures, but not anymore apparently.

 

I go to the doctor more than most people. I take more medications than most people. And if you have been keeping up with me, I am clumsier than most people as well. This makes for a fairly hefty dollar amount of bills for my needed health care.

 

It is now. At a minimum, I have been to some doctor somewhere at least once a month, usually far more than that. So imagine my surprise when I found out that I still owe nearly $12,000 of my deductible. We were told in the beginning that our deductible was $14,000 for the two of us. Now I am learning that it is more like $20,000. The break down on that is $14k for me and $6k for my husband.

So even with those high deductibles, I was under the impression that I should be nearing the end of that given my frequent flyer miles. Again, wrong. Wrong again! You see, the insurance companies have it rigged to where you will NEVER go anywhere near your deductible. They do this clever thing.

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Let me explain:  If you have ever looked at a statement from BCBS You will see where they tell the providers that they only approve for certain procedures to be billed out at x dollar amount rates. Then the rest is between you and your doctor. They can either bill you the difference or they can just change the charges to only bill for what the insurance company approves. But here is another catch, unless you have met your $20k deductible, you will be being billed no matter what. So now, not only is your health probably in the gutter but so is your credit.

And here’s another kicker, those discounted rates that you think are the only thing that saves BCBS a little face are really the devil in disguise. They have them discounted down so that you will NEVER reach that asinine deductible which would be when they actually start to pay a little bit of your health care. It really should be illegal.

 

Just this week I got a letter in the mail that they will no longer cover Methotrexate along with other medications I require. They don’t have a reason why it is just not going to be covered. So bam, there goes my little life. This methotrexate keeps me alive people. It keeps me from killing myself. Not in a suicidal way, but physically, That’s what autoimmune disease does. Methotrexate is supposed to be a medicine used to stop your body from thinking that your immune system should be battling it out with the rest of your body.

So I could go on and on and on and on about this because there is more. But it is bed time. And I have worked myself into another tizzy being mad about this. It is just such a hopeless feeling.  Your body is crapping out on you, you break a foot, you can’t afford to fix it, and NOBODY cares! Amazingly the word “care” is included in almost every phrase you can think of when it comes to health care today…  Ironically, NOBODY CARES!