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.

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!

Diplomas for All

i283163839591050357._szw480h1280_Well, tomorrow is the day I get to report the non-progress I’ve been experiencing. I know I have said this a lot here lately, but I mean really? How much is it going to rain? For the love of God and all of my aching body parts let’s put an end to this unstable air PLEASE?

 

I have been fairly absent from the blogging scene lately. Between school ending and mother in law in the hospital and me feeling like the tin man needing several squeaks of oil, I’ve just been burnt out. Something I seriously don’t understand: why in the world do we need to have these grand graduations after every single school year? Why did I have to attend my 6-year-olds graduation, my 10-year-olds, and my 17-year-olds girlfriends all in one week? Hers I understand. Graduating high school is sort of a big deal, but the others are just part of life. Don’t get me wrong, I love seeing my kids be rewarded for doing good in school, but I didn’t have these graduations and all these goings on in my time and I think, I hope, that I turned out okay.

 

Maybe I’m old-fashioned, I don’t know for sure. But see, in my time passing school was something you were expected to do. Every. Single. Year. And if you did, then you did what you were supposed to the next grade up and if you didn’t then you got to try to get it right the next year in that same grade. I guess there’s not enough opportunity to build these little butter cups up in this day in age. We must give everyone a graduation and an award, just for participating. It’s sad really.

 

So now it’s summertime and there’s one GREAT thing about summertime and that is that we get to sleep in. I don’t have to get up and shuffle kids around to schools. I get to spend all day with these kids and trust me when I say this. I love them. I love them more than anything in this world. And still, I have to say those two sentences to myself several times a day to keep from hollering at them. They fight and argue and tattle tell ALL DAY LONG. And there’s a small period of time they’re being unusually quiet and liking each other for a moment I go in to check on them and they’ve made the biggest messes one could imagine. They can turn this house into a scene on hoarders in nothing flat. Which in turn I make it into a scene as well. But not on hoarders. On Snapped.

Continue reading