As many of you know, living with a chronic illness is an evil roller coaster ride that you can never get off! I never really thought much about how hard it would really be. If you had asked me 10 years ago if there would ever be a time, where I would be limited with what I can do I would have laughed you right in your face and given you a very "colorful" answer. I have always been a typical go go go I'll sleep when I'm dead type of person. I would literally "spring" out of bed in the morning and do a whole day of work and then do a million activities after. There were very few days when I even sat down before it was time to go to bed.
Many of you regularly read my blog so I'm not gonna bore you with what you already know, but I've been having a rough go of it lately. I didn't realize what an emotional toll being sick takes on you. I feel like a totally different person now than I did 8 months ago, and I find many of us are going through this same thing.
Well my friends, I had "one of those days" today.
It all started at 3AM when the tornado sirens started going off and the wind sounded as if it would rip the side of my house off. A normal person's first thought is, "Wow I better get to the basement." Not this chick. I sat by the window and watched what was going on very closely because I knew that going down the stairs to get to the basement would hurt, because my knees are swollen and my stomach hurts so bad.
So I finally got to sleep at about 5AM. I was awakened at 9:30 by the husband walking in the door from work. (he's not supposed to get home until 3PM or so) So again, I was woke up. He got sent home early without pay because there was a power outage and the power never came back on. Normally this would be kind of a good thing, but given the fact that I'm unable to work right now, not so much.
So then, I had a rheumatologist appointment today. (enter scary movie sound effects here) So I go in there and find out that I have joint damage that I wasn't aware of before and I have to go back on the methotrexate shot. I know a couple of people who are on it as well, but for some reason my body hates it. So now I must inject myself with liquid fire that makes me feel like a puddle for 2 days after I take it.
I would never wish my pain on anyone, but the next person who gives me the "but you don't look sick" comment, I am going to punch them in the head and the stomach, then smack them in the face, then kick them in the knee. While they are down I am going to tie them down and say,"now, get up and go on with your day." When they say they don't think they can I am going to say, "Why not? You don't look sick."
Wednesday, April 20, 2011
Just one of those days..
Thursday, April 14, 2011
YAY ME I WIN!!!
Back by popular demand!
Sorry about the fact that I've been kinda awol from my blog! I haven't been having a rough go of it lately and I'm not fortunate enough to have a laptop.
I've had a pretty bad day today even, but I decided to write and try to get my feelings out. Many people don't realize how much emotional pain comes along with physical illness. I used to always be a "glass half full" kind of gal. I still try to do this for the most part, even though it's annoying to some people at times. I've always felt like feeling sorry for myself or dwelling on the negative only makes things worse. Then came lupus....
I didn't realize how, something I've practiced my whole life, would become so difficult to me. Right now, I'm sicker than I have ever been in my life. The last 7 months of my life have been spent in a bed or a doctors office. Now, anyone with a chronic illness will agree, that a doctors visit does NOT qualify as a recreational outing. Right now, that's all I can do though. I was always a 100 mile an hour, "I'll sleep when I'm dead" kind of person. So this has been very difficult for me to adjust to.
I feel like my own body has yanked the preverbial rug out from under me and there's nothing I can do about it. So with that, I'm finding that the glass that I once saw as half full is either totally empty. Actually most days the glass is shattered on the floor.
I'm so thankful that I have friends and family to lean on. I'm gonna steal from my friend Monique in saying, there has been more than 50 times lately where friends and family have lent me their strength. I keep questioning myself. I cry almost every day and I try to hide it. I wonder through the tears if I'm strong enough to go on. Somehow I find the strength to keep pushing forward. It took me a while to figure out how, but it's all the people in my life and even just the people who stumble upon or follow my blog. You all give me strength every day. I just want to say thank you to all of you right now! THANK YOU!
Mo Mo, Fo Fo, Jo Jo and Po Po. (they all know who they are) You guys especially always give me strength and I'm so thankful. Thank you for always having a kind word, or just an "I understand" (because I know you truly do) What we go through is something no healthy person can get and I'm thankful I have you guys to "get" me!
You can find Jo Jo Mo Mo Fo Fo and Po Po on twitter
@lupusman
@falanya
@messyhappiness
@purplegimp
Friday, March 4, 2011
Tied Together with a smile
Anyone who knows me, knows that I am a huge Taylor Swift fan! One of her older songs came on recently and I realized how much it explained, some of the feelings I have while battling with being sick. I tend to be a bit of a pessimist about myself and it gets way worse when I'm sick. Not many people know this. Even when I am in so much pain I can hardly stand it, I smile a lot to make everyone else think I'm fine. I've been doing this for years now. I heard this song and it reminded me of myself. Even though the song is about love, it always evokes strong emotions in me. Hope you enjoy!
Seems the only one who doesn't see your beauty
Is the face in the mirror looking back at you
You walk around here thinking you're not pretty
But that's not true, cause I know you
Hold on baby you're losing it
The water's high you're jumping in to it
And letting go and no one knows
That you cry but you don't tell anyone
That you might not be the golden one
And you're tied together with a smile but you're coming undone
Guess its true that love is all you wanted
Cause you're giving it away like it's extra change
Hoping it will end up in his pocket
But he leaves you out like a penny in the rain
Oh cause it's not his price to pay
It's not his price to pay
Hold on baby you're losing it
The water's high you're jumping in to it
And letting go and no one knows
That you cry but you don't tell anyone
That you might not be the golden one
And you're tied together with a smile but you're coming undone
oh oh oh oh
Hold on baby you're losing it
The water's high you're jumping in to it
And letting go and no one knows
That you cry but you don't tell anyone
That you might not be the golden one
And you're tied together with a smile but you're coming undone
oh oh oh oh
You're tied together with a smile but you're coming undone
-Taylor Swift
The chorus especially speaks to me. I have come "undone" and can no longer always be "tied together with a smile". I still try to do it but nobody is buying it anymore. I've jumped into the water and am hoping that I don't drown. I know that if I just keep swimming I can make it!
Sunday, February 20, 2011
MY Vicious In Laws
Their have been countless jokes and stories written about people and their troubles with their in laws. It has been recorded in countless songs. Most people I know dread going to their in laws houses or even spending a few minutes with them. I for one, got lucky enough not to have to be one of those people. I will never forget the feeling of complete terror on the 20 minute drive to his mom's house to meet them for the first time. I was almost nauseous because I was so nervous. After the first 10 minutes everything changed! My husband is constantly pulling me away from his mom's house or getting jokingly offended because his sister comes over to the house and walks right past him to say hello to me! lol I just wanted to write this to make you all jealous of my situation and also as kind of a tribute to all of them.
My husbands brother Taylor, is one of those people who walks into a room and commands attention! He is one of the funniest people that I know. I admire the fact that he can talk to anyone. No matter what age,race, religion or sex you are, you just want to be his friend as soon as you meet him! It's really strange! He is one of the most fun loving people I know as well. He is still quite young so of course it has gotten him in trouble from time to time. I find myself incredibly protective of him as if he is truly my own little brother. I catch myself, every time I talk to him, ending the conversation with, "Have fun but make sure you are also being careful!" I have officially become the protective big sister! lol
His sister Tiffanie is also someone that you can't help but notice when she walks into a room. She is physically one of the most beautiful people ever. The best part about that is that she really doesn't give a shit! I know that sounds kind of harsh to say, but what I mean is she is one of the most beautiful people inside as well. Most of the time you see women who are beautiful on the outside and as soon as they open their mouth to start talking to you, you would rather punch yourself in the face repeatedly than to continue on with the conversation. She is smart and caring and she can laugh and joke with me about just about anything! She is also one of those people who, as soon as you meet her you really want to be her friend!
My husband gets most of his demeanor from his Dad. I have never met a more calm person in my life. lol When you around him it's just kind of relaxing. He doesn't really get too excited about anything and that is one of the things I value most about my husband. I worry all the time and he snaps me out of it.
His step dad Chuck is one of the most interesting people to talk to. He could hold a conversation with anyone about anything. There is truly never a dull moment around him. In a lot of ways, in my opinion, he has been a huge influence in my husbands life. He has taught him a lot of things about being self sufficient and is definitely kind of a ying to Koy's moms yang. In a lot of ways he is like me, how Koy is like his mother. I tend to talk all the time and he tells me to shut up. Much is the same with Chuck and Koy's mother. lol I can never keep a straight face when someone says something and he spits out, "Gee Fer Socks" (or whatever the saying is)
Koy's mother Kathie has been an extremely influential person in my life. She is an incredibly strong woman who goes right after what she wants. Most women like that tend to be cold and off putting but I don't know of ANYONE who rivals the heart of gold that is inside this woman. I can remember the feeling of sheer terror 3 years ago when we were on our way to tell her that we were engaged. I have loved Kathie since the first time I met her, but I was engaged to be married to her only biological son. Most women tend to have some bitterness in that situation. I was freaking out the whole drive there. We walked into the door and on my way to the bathroom, I tripped over her dog and fell in the hallway. So right then I thought to myself, ok this can't be a good sign. When we told her she actually cried tears of joy. She welcomed me into the family with open arms and has treated me just like one of her kids ever since. She has done everything from, sitting in the hospital with me to just listening to me cry if I had a bad day. I have never felt so close to someone who is not part of my biological family. I could sit and talk to her for hours and she always knows what to say.
I don't really understand how I got so lucky to be blessed to have all these people in my life. Without, even talking about my husband, I guess you can see why he was the one I chose to marry. I love all of them so much, just as if they were my own family, because now they are. Koy has a little piece of all of these people in him. It makes him the perfect person for me. I have especially, lately, realized that you have to hold onto what you can, when all else seems to be failing. I thank God every day that I have such strong wonderful people to hold on to!
So Helpless!
I am no stranger to the self pity party. These last few months have been very hard for me. I have always been able to push through my flare ups. I can no longer push through whatever this is that's going on now. I am so sick and in so much pain and nothing I seem to do helps. I feel so helpless.
I was always going 100 miles an hour. I worked 12 hours a day and would come home cook dinner, do laundry, whatever. The last 6 months have been tough for me because I am relying on so many other people to help me. I am so thankful that so many people are there for me, but it's difficult not to feel guilty for them going way above and beyond what they need to do to help you. I went from 100 miles an hour in my mustang car to sitting in a Chevette that's wheels have been cemented into the ground! That's a hard pill to swallow.
My family and friends keep telling me that they want to do whatever they can to help because they feel so helpless that they can't make me feel better. They have done everything from, cleaning my house, grocery shopping, and driving me all over Ohio! I keep hearing the statement, "You are far too good a person to have to go through all this." That's such a great thing to be called a good person, but I don't really see myself that way. They keep saying over and over I feel so helpless I wish I could do something to make you feel better. I know they want to help but I always think to myself how could they possibly feel as helpless as I do?
Well now I know. In the past few days I have had a good friend involved in a motorcycle accident and another good friend who is very very sick. It is so frustrating not being able to fix it. I want to make them better and I can't do anything. Now I understand the feeling that others around me have. You just sit and worry constantly and try to figure out what to do. You always come up with nothing that's what's really bad.
At least I have been taught to let people do a little bit for me. If it helps to eliminate that helpless feeling, that I've been having, I'm glad to be able to hand over the reigns. Although it's hard not to be able to do everything myself, I wish I was healthy enough to go visit Tim in the hospital, or go clean Monique's house for her. It's so difficult to see someone you care about struggling that way. So yes I'm gonna say it, "They are too nice of people to be going through all this pain." I am an honest believer that some people could not handle going through that kind of pain though. God puts the strength inside us to be able to rise up!
Wednesday, February 9, 2011
Husband Handbook!
So my friend Monique and I were talking earlier and it's weird how much we are like! We have the same sense of humor and even try to say things at the same time! The strangest part is that our husbands act the same too. We both have wonderful husbands who take really good care of us. They are also both relatively shy and have a lot of the same habits and "flaws." We were discussing some of these things and decided to compile a list we name the "husband handbook". I am curious to see how many of your significant others share the same kinds of habits or traits. Here's what we have so far, feel free to comment or add! Keep in mind these rules are set up like a "manual" for the husband to read.
1. You are not allowed to whine about a runny nose in our presence, unless you are also dealing with a spleen with a ninja complex!
2. If you are hurt or sick you probably need a medical opinion of someone more qualified than your wife. Call the doctor and refer to #5
3. You must be sick enough for you wife to feel sorry for you in order to avoid being addressed as "little girl".
4. We will NOT smell, touch, rub or pick off anything that has attached itself to your body!
5. I promise that you will not blow up or die from placing a phone call. ie. doctor pizza, etc.
6. If the wife is on the phone, she will talk to you when her call is complete. There is no need to try to start a conversation while she is talking to someone else. Please be respectful to the person on the line and allow them to have "their" time with your wife.
7. Everyone around you knows that you are smarter than the household pets. You don't have to humiliate them in front of people to prove this fact!
8. If you choose to watch shows that lower your IQ points, you are NOT permitted to call Billy The Exterminator dumb!
9. Although most household chores get done without your help, your clothes really DON'T pick themselves up off the floor and walk to the laundry to wash themselves!
10. Your wife was not born knowing how to cook. The same process that taught her could also teach you.
11. Your wife knows just as little about filling out that form as you do. She does not automatically know how to complete paperwork that you do not. Ex. They do award rebates to men also, it's not just a chick restricted perk.
12. The vacuum cleaner can be operated by a man. There is a manual that will even show you how to do it. It's a new word to men called INSTRUCTIONS!
13. Your wife knows how to change a tire and make your toes curl. She can't do both. Which one will you choose?
14. Picking up and emery board or a tampon, will NOT make you grow a vagina.
15. Just because it's in a carton does NOT mean that you should always drink straight from the container.
16. Unless you are actually a pimp by occupation, a burgundy tweed suit pretty much ensures that you will no longer get sex.
17. I know it's hard to understand, but please don't make fun of women, just because they do not physically and emotionally abuse their best friends. You have your way and we have ours. Let it be!
18. If you choose to buy us clothing, or anything that will have to be a correct size, ALWAYS check sizes in similar products that we already have. This rule is for your self preservation.
19. When you use the last of the toilet paper on the dispenser, when you get a new roll out it goes back in the same place. If you need a more detailed explanation just ask your wife, she would be more than glad to show you how this works!
20. Although we appreciate having a man that helps do home improvement projects for us, I don't really think it's necessary to install a 700 dollar faucet with a beer bottle opener when all the old faucet needed was a screen.
I hope you guys enjoyed these. Please feel free to leave comments and we will add! :)
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