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.

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!

 

Footloose, NOT Fancy or Free

I haven’t been able to do a blog lately. This week or two has been plum pitiful. On all fronts.  IMG_4311.JPG
I think the last time I wrote I was writing about bleacher butt and I told ya’ll about how my son tore his UCL. Well, he has been doing therapy and is getting much much better. The first week of therapy was last week.
Last week started off with the entire Hallman clan coming down with what I thought was a stomach virus on Monday. By Tuesday everyone else felt okay and Bryant, my youngest, was worse. He started running a fever that would not respond to Tylenol or ibuprofen. So off to the ER we go with him. They thought it may be strep, but he didn’t test positive, so that was ruled out. So we get a breathing treatment in the hospital along with antibiotics and steroids. We get sent home with the same. He is supposed to be able to return to school on Thursday but he wasn’t because he hadn’t yet been 24 hours without a fever.
So, it’s Thursday and things are looking up because he is back to his somewhat normal self and plans to go to school tomorrow. Over the course of everyone being sick and me off and on convincing myself that I too am sick I have lost a considerable amount of much needed hours of work. Not only is it much needed because I am getting behind on my daily basic job duties but because I am also missing out on hours I need to be paid.

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As you know I work from home. I also have chronic pain that I deal with all of the time. This week was no different than any other week when it comes to pain level. I had a makeshift desk set up in the recliner in my room which I would sit in with my little lap desk and peck away on this laptop until I decided it was time for a break. Well, for whatever reason, that day I felt like setting this lap desk on the floor in front of my bed and it would be fine. For most people, it would have. IMG_4348
For my extremely forgetful, excessively clumsy self, it was a recipe for destruction. Sometime after Greys Anatomy was over I decided to hop out of bed and high tale it over towards the closet. To this day, I have no idea what I was going to look for. Not one. All I do know is that after my left foot hit that lap desk and bent in places feet are not meant to bend I blacked out and when I came to I hurt all over. Mostly my left foot which is already riddled with rheumatoid arthritis and bunions and traits that make me look like I am walking on Leggo’s for the first few steps that I go anywhere after sitting for a while.
This same left foot has made its debut on my blog before for its ability to turn green when it isn’t the perfect degree of not too hot, not too cold. This foot has now taken on a different color. Black, blue, and a little red, oh, and A LOT swollen.IMG_4347

I can’t imagine what my whole falling incident looked like to my husband who was sitting on the bed at the time of tumble, but I guess it was a laughable moment for him. I will laugh about that now, but at the time, it was a lot of things but funny wasn’t one of them.  If I could’ve gotten up, I would’ve knocked him out.
But see, it’s hard to get up when A) Your left foot doesn’t work at all, B) Your three loving (obviously more than my husband at this time) dogs are worried about you and they are all crowding around you trying to help. C) The throbbing and constant pain you are in combined with the disgust you have for yourself for being clumsy enough to allow this to happen causes you to hyperventilate. Full on, sweat, can’t breathe, can’t-do` anything! I was finally able to get myself up from the floor with the help of my husband and lie down on the bed while he took a shower and I tried to calm myself down.
It was at this time that I knew that the only thing that would help me was a prescription drug of some sort to take the edge off of the pain. So back to the ER goes another Hallman.

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After a shot of Toradol I was sent to x-ray and when I told the ER doc that I have MCTD and RA with the worst of the RA being in my feet he came back into the room and gave me a shot of Morphine. He tells me that he believes I have a Lisfranc tear and I need to see ortho first thing in the morning.
So by the time I get home and bathe and try to find any sort of comfortable position to sleep I have almost been awake now long enough to watch the sun come up. Finally, I slept. I got up Friday and got into the ortho who told me that I have two places that are clean breaks and another that is cracked. He’s worried about my Lisfranc and possibly a ligament in my ankle but can’t even attempt to check on them until my bones have somewhat healed.

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Each passing day deems my foot blacker and blacker and my body wore and worse.

There is NO relief to be found. There is no comfortable position. I am mad, sad, aggravated that along with all the other BS I go through daily with regards to pain, I still needed to bust my butt and add to that pain with some more pain.

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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

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.