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.

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My Life Abbreviated

My Story Goes Something Like This:

I have recently been diagnosed with an incurable disease. In my journey to this diagnosis which feels like a final diagnosis amongst many abbreviated diagnoses’ lead me to feel like I needed to reach out to others. This condition is an invisible illness, one that makes me a member of the chronically awesome crowd, a spoonie, a silent sufferer if you will. These too are terms I am just now learning. This is not my first blog and although it will repeat a lot of what I have already written, it will leave some out. Because there are some parts of my story that I have told which required me to remain anonymous. I no longer want to be unknown. So, I suppose I should edit some parts out.

Please note: If there are any people close to me who read this blog and their feelings get hurt in any way, it is not my intention but simply the way I felt at any given time. I think if nothing else in this country we live in, we are still allowed to have our own opinion and we are still allowed to voice them. With that being said let me start.

HallmanFamily

First of all, let me do something I have yet to do in this writing journey which is introduce myself. My name is Melissa and I am a proud mother to 5 great children. (See picture above of a rare moment which we ALL smile for the camera together) I love them with every fiber of my being, but if you are a parent you will understand my repeateded need to vent about them from time to time. Parenting alone is enough to drive many people crazy. I’m just wingin’ it here. Hopefully I don’t mess them up in any way because in this life I think it is the most important thing I’ll ever do. Raise them to know they’re loved, to be able to love themselves and others, to learn hurt and how to recover, to learn hard work, and to learn to have fun in life. And since they are mine, they’ll have to learn to learn from their mistakes. Lord knows, I’ve made many. But I think those mistakes are the ones I learned the most from.

This blog is about my daily struggle with mixed connective tissue disease and all of the other abbreviations I have been diagnosed with along the way. Isn’t it crazy how we abbreviate so many things? Like, is it really too complicated or too much work to just come out and say the words? My son has started this new thing where instead of laughing, he says, “LOL”. Really son? Isn’t it easier just to actually laugh? You know, OUT LOUD? He’s 14 and thinks he’s really cool so when I say things like that to him, I’m just not cool enough to know that saying “LOL” is cool. One day when he’s much older and wiser he will realize how stupid some of the things he does at this stage in his life are and he will look back and LOL about it.
So what lead me to decide to start a blog? Well, abbreviations of course. I’ve been given many. Some stuck, some have not. But almost every single one that I have been given has been a struggle.

 

It all started in elementary school when I was given a test for ADD/ADHD. I passed this test. Or some would say failed it. I guess it depends on whether or not you see it as a glass half full or half empty sort of thing. I mean, failing tests was what caused me to be tested in the first place, so this time I considered myself having passed this one. I had an answer, or at least in my little mind, I did. I knew now why any amount of studying I did wouldn’t show in my test and why my friends had better grades than I did even though I never saw them study.
I was going to finally fit in I thought. This magic medicine will solve everything. Boy, was I ever wrong?

 

My principal wouldn’t even accept that I was ADD. “She doesn’t have ADD, she’s such a pretty little girl” she would say. “You need to have her retested, they got it wrong”. Being diagnosed with ADD in the 80’s was a different ballgame than it is today. Note that I didn’t say ADHD. Yes, friends, I have never had a hyper bone in my body. I wish sometimes that I did. That way I didn’t procrastinate as much as I do, or maybe I would have the energy to do the things my mind wants to do, but I just can’t. I have no reason as to why, but I just don’t follow through with things as I should. I’ve been wanting to write a blog for the longest time and I just haven’t. And I don’t have an excuse.
This blog is going to cover so much more than ADD. This is just where it all began for me. So this is what I am going to start with today. I can’t cover it all in one day. My body will no longer allow me to sit and type for too long and my mind jumps from one thought to another so keeping up with me from a reader’s standpoint may prove to be challenging if I didn’t keep each post short and sweet.

A.D.D. Attention Deficit Disorder
L.D. Learning Disability
GM General Manager
SR Sales Representative
TMJ Temporomandibular Joint Dysfunction
DSM District Sales Manager
C.O.P.D. Chronic Obstructive Pulmonary Disease
G.E.R.D. Gastroesophageal Reflux Disease
FM Fibromyalgia
A.D.H.D. Attention Deficit Hyperactive Disorder
R.A. Rheumatoid Arthritis
FM (again) Fibromyalgia
M.C.T.D. Mixed Connective Tissue Disease

As stated before I am almost positive I have left some out, but you get the gist of it. Those last three have been the hardest thus far and they are what have led me here to write this blog. Because I don’t know anyone else who suffers with this right now, I kind of feel alone with it. And I don’t want a pity party, but I do want to know what is normal. Am I normal? I know I’m not, but am I kind of normal? These are the questions you ask yourself when you have been doubted by so many. Even the very doctors that eventually came up with these diagnosis’. Sometimes, even my own family. So why wouldn’t I question myself?

 

Bunny Fog

 

The Grind

 

Well, the bunny has come and gone and the hangover is today. By hangover, I mean pain from my ole friend MCTD, not Jack Daniels or any other of the like.  Somehow I managed to pull off Easter shopping for all 4 kids and a family lunch a county away within 24 hours.  By the time I got to the lunch I wasn’t able to do much aside from sitting in a chair like a knot on a log.

 

The Pain

 

My body hurt. It’s crazy how a task as easy as shopping can wear on your body as if your a 90-year-old woman. Actually, there was a couple at lunch who were in their 90’s and seemed more active than me. It’s embarrassing to me. I feel like I look lazy.  I can’t stand lazy people. And now I find myself with no choice at times. The line between procrastination and avoidance has become fuzzy. I’m unsure if I put off washing clothes because I know my back will hurt afterward or if I’m just procrastinating because I don’t want to do it right now.

 

 

It’s Real

 

 

After all of the shopping and all of the family time, I returned home and realized I had forgotten to buy a single morsel of food for Easter supper. I’d also not gotten a single egg for the kids to dye. So back to Wally World I go. By this time that place was a mad house. I return home with goods in tow. My husband oversaw the egg festivities, thank the Lord. I took an extra long bath and by the time I got out everyone, including my husband, was asleep. This meant I alone hid all of the eggs. I alone set up all 4 Easter baskets. I alone disposed of the evidence.

 

And It Hurts


While hiding eggs my back was in such a state of pain that I was twitching. I’ve done this a good bit lately Continue reading