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.

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!

 

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

No Fountain of Youth at the Beach

I have a public service announcement: THERE IS NO FOUNTAIN OF YOUTH IN PANAMA CITY BEACH, FL! At least, not that I found over the course of a week. Truth be told, this trip made me feel old. Older than I actually am. I spent 8 nights and days there and guess how many times my faulty body let me actually go down to the beach. 2 (two) visits to the sugar white sand. And two was all I could muster.


The first trip was during the day. I had no umbrella or pop up tent to block the rays from burning my pasty white skin. Mixed connective tissue disease means stay out of the sun. The medications I take for this disease all have warnings about sun exposure meaning stay out at ALL cost. So I loaded down with SPF 100 cream and I went for about one hour to the beach. I watched from afar as my 6-year-old and 37-year-old husband/kids played. Doing things I can not do any longer even though I really want to.
When you go on a trip like this, something we used to do all of the time with no problems what-so-ever, that whole spoon theory really comes into play.

My 6-year-old doesn’t understand it and I don’t expect him to. I don’t even want him to.  He persistently begged me to go to the beach with them every single day. He persistently begged me to go fishing at night at the beach with him every single night. My rationing of spoons told me that if I gave in and went to the beach tonight, I wouldn’t be able to move the next morning. Alternately, they told me that were I to go to the beach today, I won’t be worth a thing when we returned.

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I felt like I was letting my son and my husband down. I felt like I was making my husband mad. I don’t know why I felt this way because he never made me feel like he was mad or anything. On the way down there we found this awesome radio station. It was a great mix of older country music and really old country music. Mostly, the music I grew up with. I am a music lover and I love all music. Rap, pop, rock, country, classic rock, punk, heavy metal, you name it, I love it. On the way down the song, “Different” by Kenny Chesney came on. It caught me off guard. I can’t begin to explain why, but it made me cry. And cry…and cry…

There I was, staring out of the window, hoping no one else realized I was balling crying. I couldn’t hide it well. My husband asked me “are you crying?” “What are you crying for?” I told him that I had no idea. And this did make him mad. But I still don’t know what made me cry like that.

Something about being told you have an incurable disease that may eventually lead to your early death makes you see your entire life different. It makes you see your entire future different for sure. It leaves you on an emotional roller coaster ride that you can’t get off of. I have always had a quirky reply to my kids when they say “that’s not fair”. I have always told them that the fair only comes once a year. You buy your tickets, you ride your rides, and that’s all the fair you’re going to get in this life.

Now, I’m getting my moneys worth out of this ticket to this lifelong roller coaster ride.  The highs are rare, the lows are frequent, the upside-down and twisting is constant. My roller coaster ride doesn’t have an attendant. There is no way to turn it off or make the ride end. The person in control of it is in God’s hands. It’s up to Him, me, doctors, and support. IMG_3737

One of the days we were down there my husband talked me into going to play putt putt golf. Side note: I despise putt putt golf. But we went and I have to admit I had a blast. When we got there I quickly realized we were into way more than I originally thought. This place had an arcade, two Farris wheels, bumper cars, bumper boats, and a crazy house, among other things. The golf was inside in black lights. I didn’t win, but I did in my heart. I was having fun. Fun is something that seems hard to attain when you’re in constant pain.  We had a blast. But the trip was much longer than I thought it would be. And my body started to fail me towards the end. My son wanted to ride the bumper boats one more time before we left. I had just started to dry out from the first ride, but you only live once. Something that is much more apparent to me these days.IMG_3745

He also had to go turn his tickets in for a prize at the arcade. I asked my husband if I could ride the roller coaster while they went and did that.  So I did. I rode that roller coaster by myself. And I felt so alive. I felt so free. I felt so content. The ride was fast and short, and rickety. I don’t know why this one ride made me worry I may get sick and lose my cotton candy. Another childish thing I had done that day. I haven’t eaten cotton candy in forever.  It was so good!

My take away from the beach is this: Live every day like you are a kid again if you are able. I’m not, so this rare day wore me out. I didn’t find my fountain of youth, but maybe I did find a sprinkle of it.

I was ready to come home and see my doggies. They missed me as much as I missed them. I felt so bad for leaving them. They don’t understand. But they’ve already forgiven me.  I wish I could forgive myself as quickly as they can.

July’s Abscence

warriorI haven’t been on here and written much on my blog. I have a lot of reasons why. The first reason is METHOTREXATE! This medication is the Devil and creates the atmosphere of Hell inside your body. I know that its intention is to suppress my immune system and keep it from fighting my body, but it is starting to feel like it kills whatever your immune system hasn’t already battled.

I’m hoping my body will eventually get used to the medication and the bad effects will somewhat diminish.  I start to recover and feel a little better around Friday. So for Friday and then Saturday morning I am back to normal, or my version of normal which still includes pain. Then Saturday I take these 4  Methotrexate pills and the battle begins again.

methcanOn top of the awful side effects of this Satan derived “treatment”, I have started working. I love my job. I am able to work around my schedule and it isn’t a hard job to learn or do. I feel like I should be working during any spare time that I have because I never know when I am going to be unable to interact with the world around me or go down for the count with this disease and side effects.

Another side effect of the disease and/or medications is my inability to sleep. I don’t quite understand it, but I can be so tired and want so badly to go to sleep, but when I lay down I CAN NOT get any sleep. I take Ambien, which is obvious if you have read any of my late night posts. But I ran out of them this week and I was also out of refills. I contacted my primary care physician Monday to inquire about a refill. I had an appointment with them Thursday.  They wouldn’t call the medication in until I was seen. I understand it is a controlled substance. But they have been prescribing this to me for nearly two years. By the time I got there on Thursday I was ill. I was mad at the world. I was mad because I was tired and I couldn’t sleep. breakdown

I started my conversation with the doctor by telling her that I was sorry, but I can’t think straight because I haven’t slept in 3 days. She assured me that she would be sending my Ambien in along with some other stuff she was going to try since my insurance wants $480 a month for Lyrica.  Again, I ended the conversation reiterating my need for my Ambien TODAY. She again, told me I would get it.

I had a late appointment. The pharmacy closes at 7:00 pm. I went to Walmart to get this promised medication and it had not been sent it. All of the other medication had. I called the doctors office again. I was told that the doctor had to sign off on it since it was a controlled medicine. The doctor I had seen was a practitioner. Well, 7:00 rolled around and still no sleeping medicine. At this point, I could spit fire and nails. I literally cried right there in Walmart.

I am not a crier. I just don’t cry in public usually. I am the type of person who will wait until everyone’s asleep and then lay in bed and cry.  I know I shouldn’t keep my feelings bundled up to myself, but I feel as if I appear weak if I cry in front of anyone. Don’t ask me why.

In addition to me not being able to get the Lyrica, my rheumatologist advised me to quit taking the muscle relaxers and Neurontin and didn’t give me any refills of them either. Nor would she refill my Ibuprofen. Ibuprofen is fine, I can get that OTC. The other two, not so much.

So here I am, in pain, now sick from the Devil medicine, with absolutely NO pain medication, NO sleep medication, NOTHING! To say I had a come-apart would be an understatement. Mixed connective tissue disease and rheumatoid arthritis are enough for me to have to deal with. I am going through a lot with it. Is it too much to ask the doctors to DO THEIR JOB? It is so aggravating.

methotrexatepFinally, around 4:00 pm on Friday my Ambien was called in and I got some good sleep last night. My spirits are up a little more today. But today is a Methotrexate day so we’ll see how long that lasts.

I hate to be a Debbie Downer in my posts, but I felt a need to rant and vent about it.

I hope you all have a great weekend!