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.

A Labor of Love and Pain

Jun. 5, 2017DeliveryDay
Well, it is once again that time of year. The time when I become even older than the ancient age I already feel. Respectfully, 37 is not that old unless you’re a teenager looking up. With the coming of my birthday comes other dates of remembrance. My first born son and I nearly share a birthday. His is on the 12th. Mine is the 11th. I will never forget my 22nd birthday. I was the most nervous human being on the planet. Suffice it to say I didn’t exactly enjoy that birthday. I was to be induced at 5 am the following day. So there wasn’t a doubt in my mind about what was to unfold that next day at the crack of dawn. I couldn’t eat past 8:00 pm so my birthday dinner was put off until 7:30ish and I scarfed down a big juicy steak, baked potato, and macaroni and cheese which I would later regret. You see, being 21 or 22 years old makes you think you know everything, but you learn the hard way that you most certainly do not. 
I had failed to ask important questions prior to the delivery date. Questions I assumed were givens. Ones like:
1. Will you be giving me an episiotomy?
2. Will I poop on myself?
3. What steps will you take to ensure that I won’t poop on myself? 
4. How long will I have to push?
5.  At what point do you decide I have tried to push too long?  
6. How do you ensure the placenta has been delivered entirely?
Let me explain:

1. I had read about the episiotomy and to me, it seemed pretty cut and dry, pun intended. An episiotomy is an incision made so that your nether region doesn’t rip to shreds when pushing an entire human being out of your who-ha.  From all of the literature I had read, it was apparent to me that this would be done and was routinely done in this day in time. I was wrong. Apparently, I got an old school doctor. 

2. I had also read that it was normal for people to have a bowel movement during delivery and not even know they had done so. I further read that this would cause no harm to the baby and other than embarrassment from the father of the child knowing this had taken place there should be no worries. In this aspect, my doctor was not so old school. The first thing I was instructed to do at 4:30 am after a late steak dinner the night before was to administer myself an enema.  Let’s just say that an enema at the crack of dawn following a birthday steak dinner and accompanied by severely rumbled nerves is nothing anyone wants to be part of. 

3. See number 2, and no, I didn’t poop on self after #2, again, pun intended.

4. I am aware that no two deliveries are the same. Some women barely make it to the hospital on time before they’re spitting their babies out. Some women have already decided ahead of time that they are going to have a c-section. Me? I just wing it. My mother had assured me that once I start pushing it goes fast. She had ensured me that it only takes about 15 minutes to push before I would see my handsome little man. She had also told me that I would only feel the first few contractions and that wasn’t the case at all either. As soon as they started my IV Pitocin and got me hooked up the all of the leads that would record my contractions the pain started. And I had sent my son’s father back to the hotel room while I dealt with my enema ordeal. I didn’t feel the need for an audience for that. So once I had supposedly been squared away my mom trekked back to the room to retrieve my father and son to be’s, father. She hadn’t made it very far down the hall before I was frantically attempting to call her back. I guess I was very close to going into labor all on my own without the help of the Pitocin and those contractions HURT! I had yet to be given any pain medication and as is usually the case, the nurse didn’t believe I was really in pain yet. It was that sort of pain where you’re not sure if you should just try to be real still or move around a lot in hopes to ward it off. 
Finally, they brought some pain medication in and not long after this young man came in the give me my epidural. He was accompanied by an instructor who was trying to explain to him exactly where the needle should go. This made me feel uneasy and then the little guy asked me if this was my first epidural. I told him yes, yes it is my first to which he replied, “mine too”. I sat straight up and turned around and looked at him and his instructor and said, “I’m sorry, but no it’s NOT!” “NOT TODAY!” I hate I cut into his learning time, but that just wasn’t an area of my body that I felt comfortable being practiced on.
I was having contractions in my groin area but those weren’t as painful as the ones in my stomach. After the epidural, I was much more comfortable. Once I was dilated enough the doctor made his appearance and told me I was ready to push. He then pinched me on either side of my private area and asked me if I could feel it. I told him yes, you pinched my left side, and then yes you pinched my right side. He looked dumbfounded and called for a second injection of something in my epidural. He performed his pinch test one more time which I still felt. He then called for more pain meds in my IV. By this time I was as high as a Georgia Pine. I began pushing. 20 minutes later I growled to my mother “I THOUGHT YOU SAID 15 MINUTES, I THOUGHT THE WORST WAS OVER?” I sounded like something off of “The Exorcist” movie. At about the one hour point the doctor told me I was almost there. In my head, this meant the head was out and one or two more pushes and wa-la, a baby would be here. I quickly discovered that I could see everything that was going on down there in the reflection of the television on the wall. No body part what-so-ever was out. At this point, I was beginning to pop blood vessels in my eyes and forehead from pushing so hard for so long. Three (3) hours and forty-seven (47) minutes later I finally had my baby boy. I was shaking so bad that I couldn’t even hold him. My teeth look like I am wearing braces in all of the pictures because they were chattering so fastly.brandnewbrady


5. So, at this point, I was fairly mad at the doctor. I had never heard of anyone pushing for nearly 4 hours. I thought I had prepared myself for the worst pain imaginable, but I had not. I haven’t mentioned it yet but the pain medication and the epidural never worked for anything below the belt. It was as if there was some nerve being blocked and the medication wasn’t able to pass to that area. I told the doctor this repeatedly. Also, that episiotomy thing I thought was a given was never done. I could feel it slowly ripping throughout this entire elongated process. Also, when you have just spent so much of your energy trying to push a human out there is very little left to then deliver a placenta. I tried. I gave forth everything else I had and delivered it. Or so I thought. Aside from a scene off of “The Nutty Professor” which I will not explain because I have already gotten personal enough here, all was well with baby and momma. We went home after the normal 3-day stent.
And this is the point in the story where things really start to get scary.

Home with baby and feeding around the clock as normal. He really was a good baby although I wouldn’t realize how good until the birth of my youngest child. But something still wasn’t right with me. Initially, I blamed it on the pain medicine and lack of sleep. I have always been a fair skinned person. But this was taking pale to a whole new level. I was ghost white. And I was bleeding and passing blood clots the size of tennis balls. A week later I went to the ER and was admitted for 4 days. I was never given a reason for the blood passing other than that a little bit of placenta may or may not have been left. I was sent home and given instructions to wear these huge pads and take these pills made by Satan himself. These pills caused me to have contractions. I wasn’t explained this before leaving the hospital. The contractions were in hopes of expressing this bit of placenta and putting an end to this perpetual bleeding to death. They did not work. A week later I was in the bathtub and it quickly turned red and I nearly passed out. My aunt, who was a nurse and lived next door, instructed me to lay down in the bathroom with my feet elevated over my head until the ambulance got there. So I did. I laid butt naked on the floor of my tiny single wide trailer until they arrived. It was so embarrassing. This time my aunt went to the hospital and spoke with the head nurse to see what the doctor’s plans were this time for me. He wanted to admit me and watch and wait again. My aunt, who til this day doesn’t know how truthfully thankful I am of her for this and other things, told that nurse that she needed to speak to her supervisor and then told them that enough was enough. She told them I was not leaving here without a D&C. She further went on to ask why this doctor didn’t seem to give two flips about this and wanted to continuously send me home. She told my aunt that he just hasn’t been the same since his daughter was killed in that car wreck last year. Umm…excuse me… I’m real sorry for your loss and all, but that doesn’t mean it’s okay to kill me too. If you can’t accurately treat your patients without dang near killing them then you probably should take some time off. NOW. Because to me, this alone was the reason for ALL of the hardships I had encountered. This was why I had nutty professor lips and no episiotomy. This is why I was allowed to push for nearly 4 hours. This was why I hadn’t yet gotten to truly enjoy the gift of motherhood. But once this was done, I got to love my baby with no interruptions. And I thoroughly loved and still love being a Mom!
So to sum this post up, this is our birth week. It is my birth week because I celebrate the day of my birth and also the day I first gave birth. And it is his birthday also. Which will always trump mine and cause mine the be somewhat overlooked, but that’s okay.
It is also the Month of the one year anniversary of my grandmother’s passing. It doesn’t seem like it has already been a year. Putting that one year mark on things seems to insinuate that enough time has passed for the pain to no longer be new. But the pain is still new and it still hurts. I don’t think it will every feel any less significant.

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Talk to the Hand

I feel the need to post about the joy of motherhood. It is so rewarding, yet so frustrating at times. I know at some point these kids are going to realize they aren’t know-it-all’s, but until then, I guess we’re just going to argue about it. Constantly. At what point do you decide that continuing to argue is doing absolutely no good?

I feel as if I am failing at teaching a lesson if I allow them to believe whatever asinine thing started the discussion. But they’re so hard-headed. And it needs to be pointed out that when you have a chronic illness you are already dealing with so much of your own crap, that your tolerance level for these aspects of life is significantly low.

knowitall

Men, namely my husband, will tell you, “I wouldn’t put up with that crap.” I have a different way of viewing these things. Yes, I don’t think that it’s right for the kids to talk back, and the tone in which they use is a pre-cursor to how the situation is going to unfold. But we want to raise kids to be leaders and think for themselves. Sometimes this means allowing their opinion to be heard, but it doesn’t make it okay for them to treat you like a registered dummy.

When I was growing up there would be no questions. I would be backhanded for this type of backtalk. Not all of it, but most of it. In this day and age, people don’t do that for fear of getting in trouble. I don’t share in that fear, but I do fear it because I’m not built like most humans. If I were to backhand one of mine, that hand would hurt for days if not weeks. With this disease, I bruise easily. I hurt more with a whole lot less effort. I also don’t move near as fast as I used to be able to.

My youngest has figured this out. The oldest has figured out that I’m almost certainly not going to inflict spankings or anything resembling one on him. They’ve figured it out, but are they taking advantage of it?

 

IMG_3433It really does hurt my feelings. I can’t say that to them because I try to hold the majority of my pain and suffering inside and out of their sight. When you have very little energy and are fatigued every minute of the day, you oversleep for everything, you have to skip cooking dinner multiple times a week, you start to lose the respect of your family. It’s not fair. And there seems to be no way to combat it without explaining what you’re going through. Likewise, there seems to be no way of explaining without sounding like a cry baby or an excuse maker. It’s a battle that isn’t capable of being won, it seems.

I know all parents struggle with whether they’re doing the right thing in certain aspects of their parenting journey. I am not trying to insinuate that I’m the only person struggling with this because I am also sick. I think this post is more of a rant. A rant to let everyone know that we are all struggling with this parenting thing. I just have an added aspect to mine.

 

Here is a video that I found to completely compliment this post.  Enjoy!

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?

 

The Waiting is the Hardest Part

IMG_3090defaultWell, we’ve made it to the hospital at the butt crack of dawn as advised. It is now 9:30 am and we’re still waiting to be taken back. I am so impatient and I always have been.  I’m sure it’s part of the ADD.

 

What makes things worse is that I’m a perfectionist. Try mixing those two things together and your constantly, quickly letting yourself down.

 

I use to love playing pool, but taking my time to line a shot up just isn’t in my DNA.  I could never play golf. I can’t even watch golf. I use to thoroughly enjoy fishing. That is until mid morning my body would hurt so bad that I couldn’t go on.

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