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!

 

I’m Good, How are You?

I’m Good, How are You?

It is something we all say every day. Someone asks, “how are you doing?” And I almost always say, “I’m good, how are you?” And as those words are coming out of my mouth I always think to myself, why are you saying this. You aren’t good, you’re a wreck. You hurt ALL the time, the medicine sucks, you want to do things that you can’t, you’re down on yourself because of that, you don’t sleep good, you’re just plain out not good.howudoing

 

So why do we ask people? Why do we take their reply of “good” as truth? Most of the time the questioner already knows you are involved in some type of battle if you indeed are. But when we say we are good the conversation moves on. Or if it is brief in nature a simple “good, so nice seeing you”. And you both move on.

 

Sometimes I change my reply up because I am simply sick of telling people that I am fine when I am NOT.  Let me tell you when you unload all of the details of why you’re not fine the look on the other persons face is always like a deer in the headlights. The result of this is that we feel like raging idiots for having just dropped all of that out of our mouths.

 

I think we need to try to get out of our feelings one minute and the next I want to shout it from the highest building. Silent sufferers be silent no more. Enough is enough, ROAR!!! We should do that but we don’t.

 

painInstead, we turn to WordPress or the like and become avid writers in hopes to get some things off of our chest. We also want to search for someone else who is suffering the same way that you are. We want validation that we aren’t crazy. This is another side effect of disease or medications.

I think it is a great way to do this. But even then, times get low. Your readers aren’t reading, you have no new followers, you aren’t even interesting anymore. -Maybe. Or maybe life just gets in the way.

This past week has been filled with life getting in the way of writing. Work, being Mom and caring for my son who has injured his arm. He pulled his UCL. It is torn slap in two.

 

As of now, he won’t require surgery. They say that because he isn’t a pitcher or a quarterback, he won’t need his UCL. He is going to do rehab to learn to use the other muscles to compensate for the broken ligament.

 

I understand what they are saying. I realize surgery usually causes more damage in the long run. I have had ligaments repaired myself. I don’t wish that pain on anyone, especially my son. But don’t tell me that because he isn’t the QB or a pitcher he doesn’t need it.

 

He needs the dang ligament or it wouldn’t be there, thank you very much. And he isn’t less important because of the position he does or doesn’t play on a football field. He is one of the most important people to ME!  He may not be using that arm to toss balls around, but he has already signed with the Army. I am pretty sure his service there will be more beneficial to everyone than throwing a darn ball around would.wolffelling

 

So this is the rant I have for the week. I am dealing with a ton more pain than usual as well. Swelling everywhere, pain everywhere. And toughening up my outside so that I can hide this pain like a champ and not unload on anyone who asks me “how are you doing”. The art of hiding this is a job in itself.

But I’m doing good, how are you?

 

 

 

It’s Football Season Ya’ll

lovebamaMy favorite time of year is finally here. I have to admit, I hibernated at the end of last years football season.  I take Alabama football seriously.  And by seriously I mean, insanely so.  I have a selection of lucky shirts, socks, pants, blanket, underwear, and even where I choose to sit and in what position is of great significance to whether The Crimson Tide wins or loses.  If the combination of attire and position isn’t working and we are doing badly in a game I have to change something, if not everything. I get mad at anyone else who isn’t playing along with my mind games too. Alabama performed badly for an entire half of one game last year and ya’ll, it was entirely my husband’s fault. He wore the wrong hat.

tidecomingI am fully aware that all of these shenanigans are insane. I don’t care. It is something that I have done for as long as I can remember.  And I know I’m not the only one who does this stupid stuff. I mean one of the things that my husband and I really hit it off on when we first started dating was Alabama football and our silly rituals. One of us got stuck watching the remainder of a game in the bathroom.

So, this year I am in the market for a new “lucky” Alabama shirt. I am guessing the luck wore off of all of the other ones in the final game of the year last season. The national championship game. The cause of my hibernation for a little while. I guess I am a sore loser. Alabama fans, myself included, have become spoiled. God bless Nick Saban. I don’t know what we will do if he decides to retire anytime soon. Being a hard core Bama fan has had it’s up’s and downs. Prior to Nick, we had several Mikes to enter and be ran out of the Alabama family. None of them would ever add up to Bear Bryant.  We had some good coaches and we came through every now and then, but not enough to make National Championship t-shirts and memorabilia expire.  Our 1992 National Championship car decals and shirts were good for 17 years. (mine weren’t due to size issues)bamacrew

If you are a football fan then you either love Alabama or you love to hate Alabama. That is part of the deal that comes with being legendary. I am good with it. What I am not good with is losing and knowing we should have, could have, would have won a game that we lost. The BIG game. The one that determines who is the best.  It was decided last year that Alabama was not the best. And that chip on the shoulder of those big boys will shine this year. It won’t (I hope) happen again! But I must do my part. I must find the winning combination attire.

alabamaweekAlabama football is not the only favorite of mine. My Choctaws started their season with a win Friday.  My teenage boys both play. They didn’t play this game. The youngest is having to pay his dues as a youngster on the Varsity team and the oldest hurt his shoulder in a scrimmage game week before last. He is okay, he will play this week. So, I have a dilemma… Alabama’s first game is against FSU. FSU and my Choctaws have the same tomahawk chop and chant. I know that if I partake in this Friday night, my luck significantly changes for Saturday night.  OH MY GOODNESS, I AM CRAZY!

flareflareIn other news, I feel like crap. T-Total, poo. I guess I am having a flare. The pain associated with these abbreviations is constant. It’s hard to tell if the pain is just getting on my nerves or if I am having a flare which is more painful than the constant pain I experience. Last night, winter came. I have been waiting on winter for 7 seasons now. It finally came, and now we have to wait an entire season to see what else winter does.  And guess what fellow Game of Thrones fans. Now that winter is here and leaving us hanging for an entire season, we now know that the next season will be the last. What the what? I realize the budget for a show such as this can get pricey. I realize the actors now demand better pay. I understand every drawback HBO seems to have. But what I don’t understand is the business decision to end the best show HBO has ever produced. I guarantee they have gained more subscriptions solely because of this show. I know that HBO is NOT cheap. I know they’re making money and significantly more because of GOT!

Last night, winter came. I have been waiting on winter for 7 seasons even though the raven and John Snow can go back and forth from Winterfell in one episode. It finally came, and now we have to wait an entire season to see what else the slow walking, dead winter does.  And guess what fellow Game of Thrones fans. Now that winter is here and leaving us hanging for an entire season, we now know that the next season will be the last. What THE wha—-at?

I realize the budget for a show such as this can get pricey. I realize the actors now demand better pay. I understand every drawback HBO seems to have. But what I don’t understand is the business decision to end the best show HBO has ever produced. I guarantee they have gained more subscriptions solely because of this show. I know that HBO is NOT cheap. I know they’re making money and significantly more because of GOT!

They better have some huge, expensive tricks up their sleeves to appease the humongous fan base for their final season. HBO, you have been warned. got