Sunday, December 30, 2012
A new year is approaching...
Another year end approaches, and you are one of two people; the ones who are happy with this past year and hoping for another great year, OR, you hated everything about this past year, can count the good things on one hand and are ready and hopeful that a new year means something better. I am the second person. Not because the year was a horrible, and I can probably count my blessings on two hands instead of one, but the health troubles and big adjustments in the house and family have worked its toll and I am ready for more peace this upcoming year.
Instead of making a list of resolutions that I will probably fail after a week then feel even worse because I rarely complete anything, I have made a list of things to remind myself the things I'd like to work on.
I wonder how many of you out there are like me and just want to be a better person. Your life and what happens in it is not always under your control, but how you receive it and what you do with it, is. So make the most of it because you only have one chance at life. And it is short.
2013 Challenges: Note to Self
1. Be a Great Mom.
- Be more patient
- Get him to bed without you, and stay there. Even if it takes a little tough love
- Learn about tough love and how to control the sobbing when he's crying for Mommy to come in there
- Be more fun; think and come up with new things to do as often as possible to stimulate his senses
- Don't yell so much. You're easily worked up and it comes out as yelling, this does nothing for either of us and just makes you both feel horrible.
- Don't sweat the small stuff, pick your battles. He's 2, and there will be days he wants nothing to do with you, so enjoy the fact he wants you to play 24/7.
- Do more learning activities, he's smart, and learns well so take advantage of that.
2. Be Healthy.
- You are sick, keep that in mind and listen to your body.
- If you are tired - take a break. Even 5 minutes and a few deep breaths can do wonders, you know this.
- Eat better. This doesn't just help you but teaches your son healthy eating habits.
- Exercise. Not to become some model in a magazine, but to make yourself feel better and have more energy.
- Try new recipies and keep those kidneys healthy.
- Get some rest
- Don't be so hard on yourself that you can't do what you used to. 1. You're older and 2. You have a disease that means sometimes you just have to slow down.
3. Get your Finances in order.
- You had a hard year, missed 3 months of pay and somehow in the last 3 years things got away from you. You have a great job and can get this under control.
- Your son does not need every toy that he sees.
- Save money for a rainy day, or in your history, a few sick ones. You just never know.
- Start now!
- Make your lunches and bring your coffee, this will save you lots.
4. Be honest, even if it is hard.
- When you don't like something someone does or says to you, tell them. Otherwise don't expect it to
get better.
5. Take time to spend with family/friends
- It's hard to get time off and have money to travel, but every penny spent will be worth it.
6. Don't be so hard on yourself.
- You are one person, you can't do it all. Let people help you!!!!
- Don't be so disappointed in people who let you down, it's life, move on. The longer you stay stuck on it, the more time you're wasting being unhappy.
- Not everything is your fault, everyone has the ability to have a happy life and you cannot fix everything for everyone.
- You are one person, work and live that way. You cannot do everything at once. This is why you got sick I swear!
7. Get smarter.
- Take some courses, this will help you at work and with your finances. Win win.
8. Travel.
- Even if it's somewhere you've already been, go. This past year you spent either in a hospital or stuck at home, enjoy yourself.
9. Help others more.
- WHEN it is not because you feel you have to, but want to and have both the time and energy to do
so. Don't stress when you can't do everything for everyone all the time.
- People who truly care about you will understand when you just can't do things sometimes.
10. Be happy.
- Follow the above and enjoy. You deserve it. Everyone does.
- Nothing worthwhile is ever easy, so work for it and when it comes enjoy your work has paid off.
I hope that everyone can find some ways to improve their life if they feel they are not currently living the way they want. Good Luck to you all and remember to put yourself first, at the end of the day it's up to you to make things happen.
R.
Monday, December 3, 2012
The heavy silence...
I sit here tonight, a little heavy hearted. Sadness seems to flood in when I least expect or need it to. After being busy and not having a minute alone, I finally get a chance to take a hot bath, relax and just let everything settle out. That's when it hits me. The sad stuff. Listening to sad music seems to actually soothe me rather than make it worse. Not a tear has been shed but I'm not ruling that out, I am writing after all and that usually does the trick.
I have been back at work quite steadily and it's been going alright, just really tired and irritable still. I've decreased from 60mg of prednisone (the hell drug!) to 15mg and although it's quite a considerable difference, my mood has yet to realize that we're getting off this crapola. My skin has slowly started to adjust although the steroid induced acne is a mother....
Speaking of mother, I really missed mine this weekend. My son was sick, he cried and cried for hours straight (seriously where do they get the energy) until I finally took him to the hospital where they told me he had an ear infection.....at one point when he was crying I was holding him and rocking with him in my arms while he and I both cried and all I wanted was my mom to be sitting at the kitchen table drinking a Pepsi (her fave, she always had one with her) in her always matching pajamas and housecoat telling me that it's going to be okay. But instead the fact that wasn't the case just made me more sad.
It's really hard for me to vent about missing my mom because if I talked about it as much as I feel the pain from her being gone, I would probably drive everyone away. Most people look at me and they see someone who is "strong for going through what I went through" but it's an act. A facade if you will. I am not strong. I cry everytime I am alone. Everytime. In the car, the shower, when no one is home. When I am not home. All the time. This hasn't always been the case though. For awhile I had no tears left, I just had anger. Red. Hot. Anger. Now it's a pretty good mixture of both.
I don't say that I cry all the time for pity, I find after years of holding it in, it's quite freeing. I usually feel much better after. I'm not a robot! Yay! Lately I should be smiling ear to ear, my kidneys are functioning quite well and consitently. It's been 4 months without a hospital stay!!!!! But I am not smiling as much as I should. There's troubles with loved ones, not between us but in their lives that I ache for but can do nothing about. It is so hard to watch people you care about struggle and not be able to help them. Whether it's because there is absolutely nothing you can do to help them, or because they won't take it, and lastly and the worst one, you can't help them because they won't help themselves.
When I was growing up I couldn't wait to be big, now I'm big and I don't wish to be little again because that was hard, but I definitely would have done many things different. I know we all have those things we would change or maybe do a little smarter. Lately all these misfortunes amongst my friends and family have left me wondering why? I guess we all ask that now and then. More importantly however, I wish I knew how to fix it. The right words to say and the best advice to give.
Maybe it will But what good is helping others if we can't help ourselves with our own advice?
Tomorrow is a new day.
I have been back at work quite steadily and it's been going alright, just really tired and irritable still. I've decreased from 60mg of prednisone (the hell drug!) to 15mg and although it's quite a considerable difference, my mood has yet to realize that we're getting off this crapola. My skin has slowly started to adjust although the steroid induced acne is a mother....
Speaking of mother, I really missed mine this weekend. My son was sick, he cried and cried for hours straight (seriously where do they get the energy) until I finally took him to the hospital where they told me he had an ear infection.....at one point when he was crying I was holding him and rocking with him in my arms while he and I both cried and all I wanted was my mom to be sitting at the kitchen table drinking a Pepsi (her fave, she always had one with her) in her always matching pajamas and housecoat telling me that it's going to be okay. But instead the fact that wasn't the case just made me more sad.
It's really hard for me to vent about missing my mom because if I talked about it as much as I feel the pain from her being gone, I would probably drive everyone away. Most people look at me and they see someone who is "strong for going through what I went through" but it's an act. A facade if you will. I am not strong. I cry everytime I am alone. Everytime. In the car, the shower, when no one is home. When I am not home. All the time. This hasn't always been the case though. For awhile I had no tears left, I just had anger. Red. Hot. Anger. Now it's a pretty good mixture of both.
I don't say that I cry all the time for pity, I find after years of holding it in, it's quite freeing. I usually feel much better after. I'm not a robot! Yay! Lately I should be smiling ear to ear, my kidneys are functioning quite well and consitently. It's been 4 months without a hospital stay!!!!! But I am not smiling as much as I should. There's troubles with loved ones, not between us but in their lives that I ache for but can do nothing about. It is so hard to watch people you care about struggle and not be able to help them. Whether it's because there is absolutely nothing you can do to help them, or because they won't take it, and lastly and the worst one, you can't help them because they won't help themselves.
When I was growing up I couldn't wait to be big, now I'm big and I don't wish to be little again because that was hard, but I definitely would have done many things different. I know we all have those things we would change or maybe do a little smarter. Lately all these misfortunes amongst my friends and family have left me wondering why? I guess we all ask that now and then. More importantly however, I wish I knew how to fix it. The right words to say and the best advice to give.
Maybe it will But what good is helping others if we can't help ourselves with our own advice?
Tomorrow is a new day.
Saturday, October 6, 2012
Gobble gobble, thank you.
I'd trade all my tomorrow's for one single yesterday...Janis Joplin. Mom's favorite. Today it's turned up on my playlist as I think about her. 5 years on Monday since she left this earth, not a day goes by that I don't miss you. XO
Thanksgiving, a time to truly give thanks. Sometimes it can be really hard to see the good things you have because well, simply put, life is hard. But when this time of year rolls around, and I'm surrounded and haunted with the memory of my Mothers passing, I try very hard to think of the positives.
This year has been a roller coaster, and not the new ones they have these days, nope. What I'm talking about are those old wooden, rickety and jolty ones that should be torn down. Yet, I am thankful.
I'm thankful that I got sick, because before being diagnosed, I just felt miserable all the time without understanding why and with no solution in sight. So although I would love to be healthy and without any disease, I am under good care and living much happier then I have in a long time.
I'm thankful for those who stuck by me. This last year has been full of changes, and although they haven't been easy, they have been for the best. And although I lost some friends along the way, I've discovered my true friends and that in itself is something I feel blessed about.
I'm thankful for the support I have gotten. Being sick has been hard on many aspects of my life, and I am so grateful for all the support from financial to having homemade meals brought to my house, and people coming and cleaning my house while I was sitting here on oxygen! And for the talks, because I have been so emotional and I'm glad I didn't have to hold it in. For the help with my little man, Daddy totally rocks when Mommy gets sick and it's nice not having to worry about him because I know he's in good hands. And thanks to my friends for taking him to the Zoo and the park to give Daddy a little break! I appreciate all the time people took for me, the hospital visits, all of it.
I'm thankful for my son, he is truly the greatest gift anyone could ask for. He has taught me so many things and why life is so important. I've learned this year to take a step back and look and enjoy what is right here, and not plan so far ahead. Enjoy things as they happen and not dwell on things when they don't go right. Because trust me, often the things we think will happen don't. His smile, laugh and energy is inspiring and I'm enjoying being a kid myself.
I'm thankful for all the hard times. It doesn't mean I'm not sad at times, or angry etc. about things that have happened, I'm just thankful that I have so many positive things to pick me up when the bad ones happen.
I don't like using names on here, I don't mind sharing my stuff, but I don't want to bring anyone else into it. But without naming names I want to especially thank some people. My dayhome family, you are amazing to my little man and I, you've been a huge help since I've been sick and always. You're like my family and I'd be lost without you. To my little man and his Daddy, you have both been so great through all my ups and downs, and although the changes have not been easy I'm so thankful for you both in my life and lucky to have you. To my brother from another mother, I'd be lost without your eyebrow raises and smacks on the head that keep me in line even when I don't want to hear it. To my bff's, who coincidentally all start with K (weird!) THANK YOU! I would not have made it through this year without your shoulders and ears! To say I am blessed to have such amazing friends, including my east coast bff and other good friends, is an understatement. To my bf and his family, thank you for all the support and help you've given me this summer. You've helped keep me going. And to my daddy, I love you! Thanks for being there for me.
I am thankful my dad lives here now, seeing him often has been helpful especially being sick. Having him pop over for chats is unreal! I feel like a little girl getting excited to hang out with Daddy! It's been great.
I'm thankful I had my mom for as long as I did, even if I still don't think it's fair that she's gone.
I'm thankful for my little salon in my new house, it's been great being back behind the chair doing something I love.
I'm thankful that the NFL got the regular refs back, and that I can watch my team win right now.
Truly I am thankful for everyone in my life, whether you're here for now or forever or if you've come and gone. Life is full of changes and stress should be eliminated as much as possible. I'm learning to take things hour by hour and enjoy it all. Slowly it's working. I hope everyone can find something to be thankful for this year.
Happy Thanksgiving.
Monday, October 1, 2012
The Last Goodbye
On this day, in 2007, I said goodbye to my mom for the last time. Only I had no idea. She hugged me, teared up because she was always a cry baby, and I told her we'd talk about Thanksgiving sometime that week and make a plan as it was the following weekend. We did talk once through voicemail tag. And that was it. It wasn't even a great last message, I was mad at her. Most people don't know that. We argued about her boyfriend and the fact I hated him and didn't want to spend my Thanksgiving pretending to be nice to him or his enabling family. She said she understood and she was still going to go and we would get together another time. She didn't go, and we never got together another time. I wish I would have went.
My mom died five years ago come October 8th, which was Thanksgiving in 2007 and now again in 2012. It's a shame that such a thoughtful holiday be so tainted by her loss, but it is what it is. I try to make the most of it, usually I just warn people to keep their distance for this week or so and pray no one tells me "she's always there" or "just remember the good times" and especially not "cheer up!". My mother's passing was too soon, as death usually is at any age because it's so permanent. She had a problem, and it got the best of her, but that's not the woman I choose to remember. There are times I get so angry about it, about the why and what if's, but after nearly 5 years, I'm slowly able to manage my emotions about it better so I can share the good things about her with my son.
My son and I were sitting in the living room like every other day just recently, he looked up at a picture of my Mom and smiled and pointed at it, then looked at me and said "Mum!" I didn't think we looked much alike, but when I kept trying to tell him it was Grandma he just kept staring and saying "Mum". He's never met her, not here anyways. I once went to an angel lady who told me I would one day have a baby, it would be a boy and that my mom was holding him. I like to believe that since I did have a baby, and it was a boy, that she's right. It gives me comfort.
Today my blog is dedicated to that woman, all the parts of her. And Mom although you may be here, these are the things I would love to tell you if you showed up today...
I love you. I missed you everyday. I'd give you a hug. I'd forgive you for all the things I'm still holding on to. I'd let go of the pain and regret I have for not trying to help you more. I would introduce you to the most beautiful little boy you've ever seen, and show you how smart he is and how when he looks at me in a certain way it reminds me of your baby pictures. I'd ask you for the recipes for all my favorite foods you used to make. I'd cry in your arms for hours without saying anything and feel like a little girl again because that's how I feel now, but I'm alone. I'd tell you how much you taught me that I've finally started to understand why it was so important. I'd let you clean my house because you always do it so good (and we laugh because you know it's true and you know you would). I'd tell you how sorry I was for you having to see the real me and all the mistakes I have made. You would forgive me because you loved me more than anyone ever could, which being a Mom now I totally understand. It's truly unconditional. I mostly would want you to know that every day since you left I have been hurting, hurting because I miss you, because I think I could have stopped you, because I wish we could talk about all the things we never resolved. And finally when we were done, I would tell you goodbye and pray that this time I could handle it. Right now I still can't. All in all, if I could see you one more time I would just want you to know that I need you, love you and hope one day I will get to spend my days with you again.
No one has ever come close to replacing her. No one could. And most people can't understand this pain because they haven't experienced a loss like this and I hope you never do or that you're really really old. Knowing that 5 years ago today, when I got into that car and drove away listening to music and talking to my friend that was with me, not thinking for a second it was the last day I'd hug you, feel your fuzzy hair in my face or smell your perfume just makes me wish I could yell at myself and tell her to turn around, spend another hour, another night, something! I feel like I'm still holding on to some weird notion that you'll come back. Even though, I know that's not true or possible.
I know this is depressing, you don't have to like it. I hate it myself. But if I don't vent here I won't vent at all so I need this. It's for me. If I can give anyone advice, especially people who have bad relationships with their parents, WORK IT OUT! I don't care why you're upset or if your parents won't accept your attempts to mend it, at least you will know you tried if anything were to happen. And for those who have parents that are addicts, you can't fix them. Remember that always. Their demons are their own, all you can do is make the most of your time with them especially when/if they have sober days. Try and mend the things that bother you, no matter how trivial they may seem. You never know when you see them last if it will be that real last time. And waking up on Thanksgiving to an officer with a sad face is not what I wish for anyone.
I take this day and the next two weeks to remember these two weeks 5 years ago because it was a big part in my life story. And if I try and just cheer up and think of only the good then I am not being honest with myself. I have to let myself feel it all, it helps me to remember what I have now and appreciate it so much more. I do have much to be thankful for this year, but I also want to take this time to remember my mom. So if you see me in the next two weeks and I'm not the most chipper you know why, and it's ok, and I'm ok. Time doesn't make you feel better with death, it just makes you a little stronger to handle it or better at hiding your real feelings.
I wish everyone a happy upcoming Thanksgiving. Please sit and take time with your family and friends and talk. Make good memories. Think and remember what you have to be thankful for even if it seems like nothing. You just never know what will happen.
My mom died five years ago come October 8th, which was Thanksgiving in 2007 and now again in 2012. It's a shame that such a thoughtful holiday be so tainted by her loss, but it is what it is. I try to make the most of it, usually I just warn people to keep their distance for this week or so and pray no one tells me "she's always there" or "just remember the good times" and especially not "cheer up!". My mother's passing was too soon, as death usually is at any age because it's so permanent. She had a problem, and it got the best of her, but that's not the woman I choose to remember. There are times I get so angry about it, about the why and what if's, but after nearly 5 years, I'm slowly able to manage my emotions about it better so I can share the good things about her with my son.
My son and I were sitting in the living room like every other day just recently, he looked up at a picture of my Mom and smiled and pointed at it, then looked at me and said "Mum!" I didn't think we looked much alike, but when I kept trying to tell him it was Grandma he just kept staring and saying "Mum". He's never met her, not here anyways. I once went to an angel lady who told me I would one day have a baby, it would be a boy and that my mom was holding him. I like to believe that since I did have a baby, and it was a boy, that she's right. It gives me comfort.
Today my blog is dedicated to that woman, all the parts of her. And Mom although you may be here, these are the things I would love to tell you if you showed up today...
I love you. I missed you everyday. I'd give you a hug. I'd forgive you for all the things I'm still holding on to. I'd let go of the pain and regret I have for not trying to help you more. I would introduce you to the most beautiful little boy you've ever seen, and show you how smart he is and how when he looks at me in a certain way it reminds me of your baby pictures. I'd ask you for the recipes for all my favorite foods you used to make. I'd cry in your arms for hours without saying anything and feel like a little girl again because that's how I feel now, but I'm alone. I'd tell you how much you taught me that I've finally started to understand why it was so important. I'd let you clean my house because you always do it so good (and we laugh because you know it's true and you know you would). I'd tell you how sorry I was for you having to see the real me and all the mistakes I have made. You would forgive me because you loved me more than anyone ever could, which being a Mom now I totally understand. It's truly unconditional. I mostly would want you to know that every day since you left I have been hurting, hurting because I miss you, because I think I could have stopped you, because I wish we could talk about all the things we never resolved. And finally when we were done, I would tell you goodbye and pray that this time I could handle it. Right now I still can't. All in all, if I could see you one more time I would just want you to know that I need you, love you and hope one day I will get to spend my days with you again.
No one has ever come close to replacing her. No one could. And most people can't understand this pain because they haven't experienced a loss like this and I hope you never do or that you're really really old. Knowing that 5 years ago today, when I got into that car and drove away listening to music and talking to my friend that was with me, not thinking for a second it was the last day I'd hug you, feel your fuzzy hair in my face or smell your perfume just makes me wish I could yell at myself and tell her to turn around, spend another hour, another night, something! I feel like I'm still holding on to some weird notion that you'll come back. Even though, I know that's not true or possible.
I know this is depressing, you don't have to like it. I hate it myself. But if I don't vent here I won't vent at all so I need this. It's for me. If I can give anyone advice, especially people who have bad relationships with their parents, WORK IT OUT! I don't care why you're upset or if your parents won't accept your attempts to mend it, at least you will know you tried if anything were to happen. And for those who have parents that are addicts, you can't fix them. Remember that always. Their demons are their own, all you can do is make the most of your time with them especially when/if they have sober days. Try and mend the things that bother you, no matter how trivial they may seem. You never know when you see them last if it will be that real last time. And waking up on Thanksgiving to an officer with a sad face is not what I wish for anyone.
I take this day and the next two weeks to remember these two weeks 5 years ago because it was a big part in my life story. And if I try and just cheer up and think of only the good then I am not being honest with myself. I have to let myself feel it all, it helps me to remember what I have now and appreciate it so much more. I do have much to be thankful for this year, but I also want to take this time to remember my mom. So if you see me in the next two weeks and I'm not the most chipper you know why, and it's ok, and I'm ok. Time doesn't make you feel better with death, it just makes you a little stronger to handle it or better at hiding your real feelings.
I wish everyone a happy upcoming Thanksgiving. Please sit and take time with your family and friends and talk. Make good memories. Think and remember what you have to be thankful for even if it seems like nothing. You just never know what will happen.
Wednesday, September 26, 2012
Cliche's...In Sickness and in Health
I'm here to help you. Hopefully. This is not intended to upset anyone who has done or said the things you're about to read here. In fact it's just the opposite. It's a way to laugh at how people are very similar in tough situations. Because everything is funnier when it's true. So sit back, close your Facebook browser and enjoy.
It has been brought to my attention today and most every other day recently, that in times of sadness, pain and despair, we as humans feel the need to console and comfort people. Awesome. Way to be a good person! HOWEVER....I am here today to tell you, the cliche's aren't doing it for us. I have used them, you have most likely used them, but it needs to stop. And don't fret my lovelies, I have, through my own sadness, sickness and despair, figured out some small solutions.
Before we get to the general cliche's for all types of situations I will specifically speak from my own experiences first. Because we don't know anyone better then we know ourselves. As many of you know that in June I was diagnosed with Wegener's and Chronic Kidney disease and in August I had another disastrous set back and ended up hospitalized again and sent home on oxygen! Anyways, now that we are caught up, to say this ordeal has been hard is an understatement. It's affected me emotionally, physically and mentally. My home life, work life and mental state have been challenged to no end and I struggle daily, even though now I am back in regular clothes and wearing some make up again, it's still not easy. This is where people feel sad and try to console me. And I appreciate it I do, but when you tell someone "you're looking great, you must be back to normal", or when I do look tired again "it's ok if you need to go home early, you look tired". First of all, looking "normal" means nothing to kidney disease or Wegener's. It just means today, or at that moment, I am winning. And I don't need to be told it's ok to go home early, or have a nap etc. I know that. I am a big girl. But the biggest thing is that I am an adult, and I will and can make my own decisions and I appreciate the understanding but I don't want to be seen for being sick, I just want to be seen as me; an adult capable of making her own choices and if I need help I will ask I promise....maybe lol.
Today my doctor is preparing my forms for me to Return to Work!!! Hooray. It will be gradual to ensure my immune system and everything can handle it but nonetheless I am going. I am scared out of my mind. I don't know how people will treat me now. They were left short handed because of me, and although it wasn't my intention to do so, I fear they will be angry or cold. And I wouldn't blame them. Then there's the constant barrage of questions I am anticipating on "what happened" and of course "how are you feeling/are you okay"? I understand this will happen so I am trying to figure out how to put "I've had my entire summer taken from me, emotional and mental state put to the ultimate and often failed test, and had my finances strained to the point of more stress than I wished to have, but hey my immune system came back, thanks for asking" into something less pathetic and more condensed. People don't need to know the fine details, and hey if they want to I can send them the link to my blog haha. But honestly, I am freaking out. I want to go back, help out and feel useful again. And hopefully they don't hate me.
So now the cliche's you've been waiting for. In break ups, we tend to offer our friends these gems "You're better off without him/her", "You'll have no trouble meeting anyone" and of course the most common "Are you okay"? Here's why these are wrong. First off, no one in a break up, even the breaker of the break up, is sad. Unless they have cobwebs where their heart should be, they are hurting too and no, they are not okay. Telling someone they are better off without someone, no matter how true is just completely wrong. You weren't there every day with the other person, and even if it is extremely accurate, they don't need to be reminded of how bad things may have been by telling them they are better off. And of course, telling them they will have no problem meeting someone, SIGH, I get you're trying to compliment them, but it's either too soon to hear this or just wrong. There's better ways and I'm here to tell you what those are. Instead of asking how someone is, you just say "Hi, did you see that football game/TV Show/whatever they like of anything last night?" This let's them know you are thinking of them and that you are there because you're talking to them. And if there response is "I did and all it did was remind me of him etc etc." then you listen. But if it is "Ya I did and it was awesome" then you're still listening and just as effective. But it's on their call. And instead of the other two cliche's I listed; a compliment on how pretty they look, or how much you love something about them gives them confidence without bringing up anything specific and possibly sending their mind back to their troubles. From my experience, knowing people are there without being constantly reminded of our troubles is just as, if not more so, helpful then you trying to come up with the "right thing" to say. There is no right thing.
In death, this is very hard to talk about. And even harder to try and console someone on. Because death is not like sickness or break ups. It never goes away, it can't have a second chance. It's final. And most times it happens before anyone is ready. This is where I hope I can be of the most assistance in "consoling etiquette" because I know through losing my mom at 24, I got to a point where I actually got angry at things people said, and although I knew they were trying to help, I just couldn't hear it anymore. They didn't know what I was feeling, and even if they did, their words were as empty as my heart was. Obviously I have been able to "cheer up" (DON'T EVER SAY THAT!) in the last almost 5 years since I lost her, but it's still very hard. There are lots of cliche's in this category because as I said it lasts forever. And sadness is not dedicated to a time frame with death. I find myself missing my mom and talking about it often, especially when struggling with my own troubles when I feel her absence most.
When someone you know first loses someone, depending on the circumstances of how they pass, you may say something like "at least they are happier/in a better place/not hurting anymore etc." True, this may be the case, but, to the person missing them, they'd rather them be here. So just saying "I'm here for you if you need to cry/I love you/let me know if you need anything" is a better choice and here's why, because it let's them know you are there, willing to help THEM get through the loss and not reminding them that someone else isn't here anymore. They already know they might be better off, or happier etc.
As time goes by and someone brings up their feelings of sadness and grief over a lost one, the last thing you say, and please don't feel bad if you've said this to me, most people have; "They are always with you". That might be the case, and on a day when I am happy and thinking of her, that thought amuses and comforts me. I talk to her and laugh, and feel happy knowing my guardian angel is with me. BUT, when I'm sad about her not being here, and others who have lost people I know have said the same, it's the WORST time to say they are always with us. We don't want them always "there", we want them right here. In the flesh. And I know that's hard to understand, especially if you've had the blessing of never losing anyone, but I know for me personally, when I miss her the most it's usually because I NEED her the most at that time too. And the reality is she is never coming back, and saying she's there, it's almost like making me feel like the first day I found out she died, I can't comprehend it. And it starts all over again. I would rather when I am babbling about missing my mommy, that people just say it sucks, and they wish she was here too. Or just say you're here even though it's not the same.
Now don't be sad, or down. Be glad you know that you, feeling at a loss for words for your loved ones in hard times is totally OKAY! It's as awkward for you to say what you think you should, as it is for us to pretend we appreciate it, HA HA HA. Laugh. It's okay to laugh. In life, we get one chance to live it, but every day, every second in fact we get a chance to live it well. Regardless of the bad things that happen to us there are so many ways and chances to improve it, and we are not alone. Not alone in our losses, diseases and hardships. I met some great people just sharing my experiences here, and some of my acquaintances have become great friends through it. Sometimes we as the injured and suffering, have to reach out too. People are here for us, they tell us that and true people mean that. But they can only help if we meet them halfway. I am one stubborn S.O.B, anyone who knows me would attest to that, but even I recently have had to reach out to people for different reasons, and although some have been slightly disappointing, most of them have exceeded my hopeful expectations.
I hope for anyone reading, especially if you are lost or sad, that you find something here. I can't tell anyone enough that even in my darkest hours, I've crawled out. And though it may appear that I have had it easy, I assure you I have not. Not saying that if I can keep going you can too, I know that's another cliche I absolute despise. What I am saying is that, everyone has a strength inside them to move forward, and sometimes it just takes knowing someone is there to find that. Pick something that does make you happy and focus on making that more common in your mind than the bad things. When I am really lost and confused I think of my son, how I want him to be proud of me when he is older, and even days when I don't want to get out of bed, that usually at least gets me out of my pajamas for the day. Nothing happens over night, but it can happen. And I'm here for you, whoever you are.
R.W. <3
It has been brought to my attention today and most every other day recently, that in times of sadness, pain and despair, we as humans feel the need to console and comfort people. Awesome. Way to be a good person! HOWEVER....I am here today to tell you, the cliche's aren't doing it for us. I have used them, you have most likely used them, but it needs to stop. And don't fret my lovelies, I have, through my own sadness, sickness and despair, figured out some small solutions.
Before we get to the general cliche's for all types of situations I will specifically speak from my own experiences first. Because we don't know anyone better then we know ourselves. As many of you know that in June I was diagnosed with Wegener's and Chronic Kidney disease and in August I had another disastrous set back and ended up hospitalized again and sent home on oxygen! Anyways, now that we are caught up, to say this ordeal has been hard is an understatement. It's affected me emotionally, physically and mentally. My home life, work life and mental state have been challenged to no end and I struggle daily, even though now I am back in regular clothes and wearing some make up again, it's still not easy. This is where people feel sad and try to console me. And I appreciate it I do, but when you tell someone "you're looking great, you must be back to normal", or when I do look tired again "it's ok if you need to go home early, you look tired". First of all, looking "normal" means nothing to kidney disease or Wegener's. It just means today, or at that moment, I am winning. And I don't need to be told it's ok to go home early, or have a nap etc. I know that. I am a big girl. But the biggest thing is that I am an adult, and I will and can make my own decisions and I appreciate the understanding but I don't want to be seen for being sick, I just want to be seen as me; an adult capable of making her own choices and if I need help I will ask I promise....maybe lol.
Today my doctor is preparing my forms for me to Return to Work!!! Hooray. It will be gradual to ensure my immune system and everything can handle it but nonetheless I am going. I am scared out of my mind. I don't know how people will treat me now. They were left short handed because of me, and although it wasn't my intention to do so, I fear they will be angry or cold. And I wouldn't blame them. Then there's the constant barrage of questions I am anticipating on "what happened" and of course "how are you feeling/are you okay"? I understand this will happen so I am trying to figure out how to put "I've had my entire summer taken from me, emotional and mental state put to the ultimate and often failed test, and had my finances strained to the point of more stress than I wished to have, but hey my immune system came back, thanks for asking" into something less pathetic and more condensed. People don't need to know the fine details, and hey if they want to I can send them the link to my blog haha. But honestly, I am freaking out. I want to go back, help out and feel useful again. And hopefully they don't hate me.
So now the cliche's you've been waiting for. In break ups, we tend to offer our friends these gems "You're better off without him/her", "You'll have no trouble meeting anyone" and of course the most common "Are you okay"? Here's why these are wrong. First off, no one in a break up, even the breaker of the break up, is sad. Unless they have cobwebs where their heart should be, they are hurting too and no, they are not okay. Telling someone they are better off without someone, no matter how true is just completely wrong. You weren't there every day with the other person, and even if it is extremely accurate, they don't need to be reminded of how bad things may have been by telling them they are better off. And of course, telling them they will have no problem meeting someone, SIGH, I get you're trying to compliment them, but it's either too soon to hear this or just wrong. There's better ways and I'm here to tell you what those are. Instead of asking how someone is, you just say "Hi, did you see that football game/TV Show/whatever they like of anything last night?" This let's them know you are thinking of them and that you are there because you're talking to them. And if there response is "I did and all it did was remind me of him etc etc." then you listen. But if it is "Ya I did and it was awesome" then you're still listening and just as effective. But it's on their call. And instead of the other two cliche's I listed; a compliment on how pretty they look, or how much you love something about them gives them confidence without bringing up anything specific and possibly sending their mind back to their troubles. From my experience, knowing people are there without being constantly reminded of our troubles is just as, if not more so, helpful then you trying to come up with the "right thing" to say. There is no right thing.
In death, this is very hard to talk about. And even harder to try and console someone on. Because death is not like sickness or break ups. It never goes away, it can't have a second chance. It's final. And most times it happens before anyone is ready. This is where I hope I can be of the most assistance in "consoling etiquette" because I know through losing my mom at 24, I got to a point where I actually got angry at things people said, and although I knew they were trying to help, I just couldn't hear it anymore. They didn't know what I was feeling, and even if they did, their words were as empty as my heart was. Obviously I have been able to "cheer up" (DON'T EVER SAY THAT!) in the last almost 5 years since I lost her, but it's still very hard. There are lots of cliche's in this category because as I said it lasts forever. And sadness is not dedicated to a time frame with death. I find myself missing my mom and talking about it often, especially when struggling with my own troubles when I feel her absence most.
When someone you know first loses someone, depending on the circumstances of how they pass, you may say something like "at least they are happier/in a better place/not hurting anymore etc." True, this may be the case, but, to the person missing them, they'd rather them be here. So just saying "I'm here for you if you need to cry/I love you/let me know if you need anything" is a better choice and here's why, because it let's them know you are there, willing to help THEM get through the loss and not reminding them that someone else isn't here anymore. They already know they might be better off, or happier etc.
As time goes by and someone brings up their feelings of sadness and grief over a lost one, the last thing you say, and please don't feel bad if you've said this to me, most people have; "They are always with you". That might be the case, and on a day when I am happy and thinking of her, that thought amuses and comforts me. I talk to her and laugh, and feel happy knowing my guardian angel is with me. BUT, when I'm sad about her not being here, and others who have lost people I know have said the same, it's the WORST time to say they are always with us. We don't want them always "there", we want them right here. In the flesh. And I know that's hard to understand, especially if you've had the blessing of never losing anyone, but I know for me personally, when I miss her the most it's usually because I NEED her the most at that time too. And the reality is she is never coming back, and saying she's there, it's almost like making me feel like the first day I found out she died, I can't comprehend it. And it starts all over again. I would rather when I am babbling about missing my mommy, that people just say it sucks, and they wish she was here too. Or just say you're here even though it's not the same.
Now don't be sad, or down. Be glad you know that you, feeling at a loss for words for your loved ones in hard times is totally OKAY! It's as awkward for you to say what you think you should, as it is for us to pretend we appreciate it, HA HA HA. Laugh. It's okay to laugh. In life, we get one chance to live it, but every day, every second in fact we get a chance to live it well. Regardless of the bad things that happen to us there are so many ways and chances to improve it, and we are not alone. Not alone in our losses, diseases and hardships. I met some great people just sharing my experiences here, and some of my acquaintances have become great friends through it. Sometimes we as the injured and suffering, have to reach out too. People are here for us, they tell us that and true people mean that. But they can only help if we meet them halfway. I am one stubborn S.O.B, anyone who knows me would attest to that, but even I recently have had to reach out to people for different reasons, and although some have been slightly disappointing, most of them have exceeded my hopeful expectations.
I hope for anyone reading, especially if you are lost or sad, that you find something here. I can't tell anyone enough that even in my darkest hours, I've crawled out. And though it may appear that I have had it easy, I assure you I have not. Not saying that if I can keep going you can too, I know that's another cliche I absolute despise. What I am saying is that, everyone has a strength inside them to move forward, and sometimes it just takes knowing someone is there to find that. Pick something that does make you happy and focus on making that more common in your mind than the bad things. When I am really lost and confused I think of my son, how I want him to be proud of me when he is older, and even days when I don't want to get out of bed, that usually at least gets me out of my pajamas for the day. Nothing happens over night, but it can happen. And I'm here for you, whoever you are.
R.W. <3
Tuesday, September 18, 2012
Laugh at Yourself....it's the best Medicine
Good Morning! Today I thought I would keep this as short as possible, as well as tell you something I found to be funny.
Last night I had to go to the airport and after watching what seemed to be the longest football game of life (but my Falcons won so well worth it), I decided to stop and get a coffee. I also need to get some gas too so no big deal.
Well first off, I was driving my roomies car and couldn't find the button that opens the gas cap door. I looked in the usual spot but it was dark. I checked the manual and it said the same thing. I couldn't find it. Eventually I found it, but not before I was looking frantically for 10 minutes! Then when I finally got it open it took forever to open the gas cap!
So all is well, I now put gas in the car and go in for a coffee and to wash all the gas I spilled on my hands. Grabbed my coffee and washed my hands then got in line. Now this is where it gets funny...
I've been sick since June when I got my diagnosis and so feeling pretty or confident has not been my strong suit. So there's a guy in line in front of me. I believe he was a bit younger and he kept looking at me. I'm thinking, it's late, I'm exhausted and now I'm wondering if there's something on my face. Once he gets to the cashier, she gives him his total and he says "I'll get hers too" and points at me.
Before a thought even went through my head I replied immediately with "It's OK, I have gas". Now, you would think we all started laughing and brushed it off but nope. I didn't even realize what I had just said. To me it made perfect sense. I had to pay for my gas. It wasn't until I looked at the cashier who was holding in laughter so hard her face was reddening and buddy kept staring at me wide eyed. I was thinking this guy didn't take no very well. Then it finally sunk in that how I said it probably didn't come across the same way to them as I had intended it.
So I finally started laughing a bit to lighten the mood, and Ms. Cashier couldn't hold it in anymore and burst into laughter. He still stood there. So I told him "I mean I have to pay for my gas". It turns out he needed to hear that because otherwise I think he was frozen in fear.
I'm not sure if it's being a Mom, or because I've been sick and had every Tom, Dick and Harry checking out everything they can on me that I have zero filter or concern for talking about anything that I don't even notice when I do it. Nonetheless it was extremely entertaining. Once he left the cashier apologized for laughing and I said no problem because I thought it was funny too.
You would think I would have been so embarrassed, but I wasn't. In fact I found it so funny I decided to tell you all about it. Plus it was flattering that he offered to buy my coffee in the first place. I wonder if he just felt bad for me watching me try and put the gas in the car in the first place? Ha ha.
If you can't laugh at yourself, you may just go crazy. That's how I feel. So last night was a good way to lighten up even if just for a minute.
Have a great day everyone!
Last night I had to go to the airport and after watching what seemed to be the longest football game of life (but my Falcons won so well worth it), I decided to stop and get a coffee. I also need to get some gas too so no big deal.
Well first off, I was driving my roomies car and couldn't find the button that opens the gas cap door. I looked in the usual spot but it was dark. I checked the manual and it said the same thing. I couldn't find it. Eventually I found it, but not before I was looking frantically for 10 minutes! Then when I finally got it open it took forever to open the gas cap!
So all is well, I now put gas in the car and go in for a coffee and to wash all the gas I spilled on my hands. Grabbed my coffee and washed my hands then got in line. Now this is where it gets funny...
I've been sick since June when I got my diagnosis and so feeling pretty or confident has not been my strong suit. So there's a guy in line in front of me. I believe he was a bit younger and he kept looking at me. I'm thinking, it's late, I'm exhausted and now I'm wondering if there's something on my face. Once he gets to the cashier, she gives him his total and he says "I'll get hers too" and points at me.
Before a thought even went through my head I replied immediately with "It's OK, I have gas". Now, you would think we all started laughing and brushed it off but nope. I didn't even realize what I had just said. To me it made perfect sense. I had to pay for my gas. It wasn't until I looked at the cashier who was holding in laughter so hard her face was reddening and buddy kept staring at me wide eyed. I was thinking this guy didn't take no very well. Then it finally sunk in that how I said it probably didn't come across the same way to them as I had intended it.
So I finally started laughing a bit to lighten the mood, and Ms. Cashier couldn't hold it in anymore and burst into laughter. He still stood there. So I told him "I mean I have to pay for my gas". It turns out he needed to hear that because otherwise I think he was frozen in fear.
I'm not sure if it's being a Mom, or because I've been sick and had every Tom, Dick and Harry checking out everything they can on me that I have zero filter or concern for talking about anything that I don't even notice when I do it. Nonetheless it was extremely entertaining. Once he left the cashier apologized for laughing and I said no problem because I thought it was funny too.
You would think I would have been so embarrassed, but I wasn't. In fact I found it so funny I decided to tell you all about it. Plus it was flattering that he offered to buy my coffee in the first place. I wonder if he just felt bad for me watching me try and put the gas in the car in the first place? Ha ha.
If you can't laugh at yourself, you may just go crazy. That's how I feel. So last night was a good way to lighten up even if just for a minute.
Have a great day everyone!
Sunday, September 16, 2012
Snap out of it....
Do you ever have those moments where you are just angry for no apparent reason? And you and most likely anyone who has the joy of being on your radar while it's happening, wish you could just "snap out of it"? I had one of those moments today. I am still lingering on it now but it's definitely improving.
The meds are generally the main cause of these little (ya little) episodes, on top of being just generally upset that I can't just get better and be back to "normal". Then we can add in my wonderful 2 year old resisting nap time today which I thoroughly needed. It's not just for his own well being, sometimes it's for my sanity.
So after he convinced me that nap time was not happening today, despite tears and begging, I made us a snack and glared at him as he tried to look cute knowing Mommy was less than impressed. I just couldn't snap out of my funk and sitting there looking at him completely unaware of what emotions really are, and what a bad mood is I realized I was going to get zero sympathy from him. I sat on the couch for a few minutes sulking while he played, then he came back with toys and wanted me to play. His smile did something to me, it didn't make my bad mood or exhaustion disappear, but it did help me cheer up enough to get on the floor and play with him. It's not too much to ask for, he didn't want me to be sick, he didn't ask for this. And all those things running through my head made me try a little harder to snap out of it.
Someone once told me about a friend of theirs who was sick, and she used being sick as an excuse for everything; being in a bad mood, not staying in touch, being rude etc. We talked about how being sick is an explanation, not an excuse. When you know what's wrong, that's an explanation of what is happening and what can happen to that person, it is not an excuse for that person to use so they can act out or have unreal expectations. Although most sick people do need some special care now and then, and you may have to be gentle with them to some respect, it doesn't mean that life stops, or that everyone should act as though it does just for them.
I don't have expectations that things should be different. I am more moody, and I get unhappy at times more than I used to but I know that these things happen so when they do I try and distance myself from people I care about because in that same hand I know exactly how mean I can get. For me space is my healing power. Being alone. And then when I'm ready I will talk, and that helps too but in that order. There are times where I want to do things now like before, even just going out for a beer with friends, that I can't do now, one because I can't drink and two because most public places are full of germs and I am still healing from my last hospital stay. Those simple things sometimes get me down, I feel disassociated with the world sometimes, but I know one day I will have a handle on these diseases and I will be able to enjoy life. I do enjoy it now, just in moderation and I learn as I go.
Some days I feel great, I want to go back to work and feel like a human again. Then I wake up (and mornings hate me) and feel all the aches, pains, nausea, and exhaustion because I can't sleep well still and realize how long this road ahead is. I still plan on getting back to work soon, and I run my own errands again, but these are baby steps. I guess the thing I learned most today in my funk is that it is going to take more than a day, and even on the best days there could be dark moments, but I have to be honest with myself when I am feeling certain things, and give myself the space and time I need so I don't stay mad for too long, and so I don't lash out at everyone around me.
Luckily for me, my son is amazing. He didn't miss a beat and the only tears he cried today were when we had to leave Chapters because he wasn't done playing. So I think I'm doing ok. I'll play with trains and blocks and stop thinking about grown up stuff for a little while, that should definitely help me snap out of anything. Then we bake cookies :)
The meds are generally the main cause of these little (ya little) episodes, on top of being just generally upset that I can't just get better and be back to "normal". Then we can add in my wonderful 2 year old resisting nap time today which I thoroughly needed. It's not just for his own well being, sometimes it's for my sanity.
So after he convinced me that nap time was not happening today, despite tears and begging, I made us a snack and glared at him as he tried to look cute knowing Mommy was less than impressed. I just couldn't snap out of my funk and sitting there looking at him completely unaware of what emotions really are, and what a bad mood is I realized I was going to get zero sympathy from him. I sat on the couch for a few minutes sulking while he played, then he came back with toys and wanted me to play. His smile did something to me, it didn't make my bad mood or exhaustion disappear, but it did help me cheer up enough to get on the floor and play with him. It's not too much to ask for, he didn't want me to be sick, he didn't ask for this. And all those things running through my head made me try a little harder to snap out of it.
Someone once told me about a friend of theirs who was sick, and she used being sick as an excuse for everything; being in a bad mood, not staying in touch, being rude etc. We talked about how being sick is an explanation, not an excuse. When you know what's wrong, that's an explanation of what is happening and what can happen to that person, it is not an excuse for that person to use so they can act out or have unreal expectations. Although most sick people do need some special care now and then, and you may have to be gentle with them to some respect, it doesn't mean that life stops, or that everyone should act as though it does just for them.
I don't have expectations that things should be different. I am more moody, and I get unhappy at times more than I used to but I know that these things happen so when they do I try and distance myself from people I care about because in that same hand I know exactly how mean I can get. For me space is my healing power. Being alone. And then when I'm ready I will talk, and that helps too but in that order. There are times where I want to do things now like before, even just going out for a beer with friends, that I can't do now, one because I can't drink and two because most public places are full of germs and I am still healing from my last hospital stay. Those simple things sometimes get me down, I feel disassociated with the world sometimes, but I know one day I will have a handle on these diseases and I will be able to enjoy life. I do enjoy it now, just in moderation and I learn as I go.
Some days I feel great, I want to go back to work and feel like a human again. Then I wake up (and mornings hate me) and feel all the aches, pains, nausea, and exhaustion because I can't sleep well still and realize how long this road ahead is. I still plan on getting back to work soon, and I run my own errands again, but these are baby steps. I guess the thing I learned most today in my funk is that it is going to take more than a day, and even on the best days there could be dark moments, but I have to be honest with myself when I am feeling certain things, and give myself the space and time I need so I don't stay mad for too long, and so I don't lash out at everyone around me.
Luckily for me, my son is amazing. He didn't miss a beat and the only tears he cried today were when we had to leave Chapters because he wasn't done playing. So I think I'm doing ok. I'll play with trains and blocks and stop thinking about grown up stuff for a little while, that should definitely help me snap out of anything. Then we bake cookies :)
Monday, September 10, 2012
A catchy title and Witty banter...
Hey everyone. For those of you just tuning in, I have Wegeners GN and Chronic Kidney Disease and as of recently my immune system crashed and once again I'm a sitting duck.
Today I don't have much to really say pertaining to being sick. Nothing "crazy" has happened since a few days ago when I shared my embarrassing hairy story. All I can say today it that my fingers were itching to type and this is where I ended up. Sometimes typing here, sharing, even if no one reads it, makes me feel like I vented.
I'm bored. I am supposed to be taking it easy and resting which I am, but I can only watch so much TV. I've been doing other little things like cleaning and laundry as I can but cabin fever sets in. I find myself at Chapters a lot, just looking at books, reading them there is much cheaper. :) I am still exhausted and my stomach is incredibly argumentative these days and my blood results have shown me nothing but bad news, but I'm trying not to focus on a number and more on how I feel. Although I haven't been feeling great.
I'm not sure if it's the meds or what but I have been having some crazy dreams ever since I started on them. My mom was in my dream last night. She kept getting mad at me for moving some boxes, which oddly enough the other day I unpacked my basement finally because I needed something to do and it was driving me crazy. Then that night I felt like crap from most likely overdoing it, and then last night dreamt she was mad at me for it. Strange. Whenever I dream about her I feel like I really got to see her. I'm not sure if it's good or bad because in the dreams we are ALWAYS fighting which in real life we rarely did, but when I wake up I'm happy just to have seen her and heard her voice.
October is my least favorite time of the year, and it is approaching quickly. It'll be 5 years since my mom died and this year that falls on Thanksgiving day as it did 5 years ago when it happened. And with everything that's been going on since June, I am trying really hard to focus on what I really am thankful for. I'm still alive, I have the cutest, smartest and funniest little boy any Mom could ever hope for, and I have great friends and family that have really been there for me even if they don't realize it.
I'm really bad for writing people back when they message me about being sick and well wishes, and if you're reading this, don't take it personally, I just don't want to sound whiney when I say usually I'm pissy about the whole thing and don't want to seem ungrateful for your well wishes because I truly appreciate them. Just running out of ways to say that every minute is different in my life right now and things have been happening out of control and though I am happy to be here I am frustrated that I can't walk up a flight of stairs without being super tired, or run around after my son at the park because I may get sick. I have to wash him down and change his clothes after daycare, the park, a public place etc. And my own most times. It's exhausting in itself. I know there are many many people who have it worse than me, I do get that, and I consider that often. However some days I am just too tired to accept that my life doesn't suck a bunch right now.
I try to look for the reason this has all happened, and apart from the fact I was complaining all the time about feeling like I had too much to do, I can't find anything else. I have definitely enjoyed finally getting unpacked even if it took a few days, and my house is spotless because I can NOT get sick and will do anything to reduce risk of that, and I love having extra time with Hunter now but otherwise I wish I had the energy and ability to do more, just the simple things would be nice. I know I'm just complaining today. But even those of us who don't cry often, or that seem to really have a positive outlook can feel weak. Or sad. And I think it's ok and healthy to feel that. We are not robots. Although at this point I would like some robot parts that work better than what I have now.
If anyone reading this can offer me some insight, some light readings, anything uplifting to go to on nights and times like this I would really appreciate it. This has affected me in so many ways, personally, financially and work wise, and emotionally, I could really just use some outside thoughts on how I am going to live the rest of my life with all this.
Today I don't have much to really say pertaining to being sick. Nothing "crazy" has happened since a few days ago when I shared my embarrassing hairy story. All I can say today it that my fingers were itching to type and this is where I ended up. Sometimes typing here, sharing, even if no one reads it, makes me feel like I vented.
I'm bored. I am supposed to be taking it easy and resting which I am, but I can only watch so much TV. I've been doing other little things like cleaning and laundry as I can but cabin fever sets in. I find myself at Chapters a lot, just looking at books, reading them there is much cheaper. :) I am still exhausted and my stomach is incredibly argumentative these days and my blood results have shown me nothing but bad news, but I'm trying not to focus on a number and more on how I feel. Although I haven't been feeling great.
I'm not sure if it's the meds or what but I have been having some crazy dreams ever since I started on them. My mom was in my dream last night. She kept getting mad at me for moving some boxes, which oddly enough the other day I unpacked my basement finally because I needed something to do and it was driving me crazy. Then that night I felt like crap from most likely overdoing it, and then last night dreamt she was mad at me for it. Strange. Whenever I dream about her I feel like I really got to see her. I'm not sure if it's good or bad because in the dreams we are ALWAYS fighting which in real life we rarely did, but when I wake up I'm happy just to have seen her and heard her voice.
October is my least favorite time of the year, and it is approaching quickly. It'll be 5 years since my mom died and this year that falls on Thanksgiving day as it did 5 years ago when it happened. And with everything that's been going on since June, I am trying really hard to focus on what I really am thankful for. I'm still alive, I have the cutest, smartest and funniest little boy any Mom could ever hope for, and I have great friends and family that have really been there for me even if they don't realize it.
I'm really bad for writing people back when they message me about being sick and well wishes, and if you're reading this, don't take it personally, I just don't want to sound whiney when I say usually I'm pissy about the whole thing and don't want to seem ungrateful for your well wishes because I truly appreciate them. Just running out of ways to say that every minute is different in my life right now and things have been happening out of control and though I am happy to be here I am frustrated that I can't walk up a flight of stairs without being super tired, or run around after my son at the park because I may get sick. I have to wash him down and change his clothes after daycare, the park, a public place etc. And my own most times. It's exhausting in itself. I know there are many many people who have it worse than me, I do get that, and I consider that often. However some days I am just too tired to accept that my life doesn't suck a bunch right now.
I try to look for the reason this has all happened, and apart from the fact I was complaining all the time about feeling like I had too much to do, I can't find anything else. I have definitely enjoyed finally getting unpacked even if it took a few days, and my house is spotless because I can NOT get sick and will do anything to reduce risk of that, and I love having extra time with Hunter now but otherwise I wish I had the energy and ability to do more, just the simple things would be nice. I know I'm just complaining today. But even those of us who don't cry often, or that seem to really have a positive outlook can feel weak. Or sad. And I think it's ok and healthy to feel that. We are not robots. Although at this point I would like some robot parts that work better than what I have now.
If anyone reading this can offer me some insight, some light readings, anything uplifting to go to on nights and times like this I would really appreciate it. This has affected me in so many ways, personally, financially and work wise, and emotionally, I could really just use some outside thoughts on how I am going to live the rest of my life with all this.
Saturday, September 8, 2012
It's a hairy ordeal...gross
Well it's been a little while since I last wrote, to say things took a nose dive is greatly understated. Or at least at times it feels like the end of the world. Today is a good day though. I'm a little more positive. Seeing a friendly face at the blood lab this morning made my usually dreary weekly blood run seem less...sad to say the least. Usually I go in, sit down and wait, stare at everyone who still don't know how to read signs that say TAKE A NUMBER, but being a seasoned veteran at the blood lab does not boost my ego so I really should just let that go.
I'm not really sure where to start, maybe from today and I will go backwards? Or maybe I won't? If you're wondering what is with the title of this post I will share, although somewhat hesitantly but after talking to a good friend last night I realize I have to laugh at it or I'll just lose it. So the doctor has me on prednisone, it's a steroid, to keep my kidneys hopefully functioning, and it's a cheap drug with tons of side effects. Apart from possible osteoporosis (spelling?) there are little annoying side effects I didn't mind so much at first but are now driving me mental! Like the breaking out, no amount or high strength anything will fight this acne. They are acne on steroids and they are picky about where they want to live and they make me feel just beautiful. Then there's the mood swings, holy moly rollercoaster ride. Mine unfortunately have taken there position in the super happy to angry and dead silent roles. No tears for this girl unless the angry and silent part has gotten too frustrated and snaps.
My least favorite and most recent finding, is the hair. I wish that it would make my hair grow faster, but no, instead it has just decided to grow in places it never used to exist. And of course they are darker and more obnxious than normal hair. I'm a fuzzy mess! At first I kept telling myself to just leave it, I am sick and it's like a right of passage for getting better, but then I looked too closely at the mirror and realized I was growing a damn mustache! GASP! As someone who made a living off waxing people's body parts I never had to worry about this. So I went through the week debating if I wax it off or leave it. Then my doctor changed the course of action because of my immune system crash last month and said I'd be on prednisone longer than planned, probably another 6 months at least...by then I would have a full grown mustache and could probably participate in Movember. This is unacceptable. Plugged in the wax pot, and now I'm silky and smooth again. I know now I will have to maintain this but it was a small price to pay to feel feminine again. Sometimes outward beauty is the best we can do when our insides are being less than agreeable with us.
So last month, what a horrible time. It started off great! I worked a couple days, then I went to Hinton to visit my family and came home happy and refreshed after what had been a hard couple of months learning to deal with Wegeners and all it's fun little outbursts. The next morning I woke to mega chills...uh oh a fever! 104 degrees! This went on until Sunday (started Wednesday), so I went to the hospital and they gave me some antibiotics, but I kept getting fevers every day of 103 or 104 so Thursday they gave me better drugs and by Sunday with fevers everyday still, back to the hospital. As it turns out my Immune system decided to take a nose dive, I got pneumonia and my lungs collapsed. Then because of this my kidney function that was all the way up to 80% (when they thought it wouldn't reach 60 ever again) dropped down to 40 again. So if it wasn't one thing it was another. While in the hospital I had some severe reactions to GCSF; bone pain. I would rather give birth to a 15 pound baby then experience that again. Bone marrow is not to be taken lightly. OUCH! So finally after 7 days in the hospital again I was sent home but this time with a friend, Mr. Oxygen.
It is not fun relying on something to breathe. In fact when my lungs collapsed in the hospital (not to be too descriptive) I was in the washroom when my oxygen level dropped to 30% and I was gasping for air. Then I started coughing and as I came out of the washroom nearly dying I threw up. Luckily there was oxygen tubes in the room from when I first got there and had a smaller episode, so I quickly put it in my nose and cranked it up. It's definitely the worst feeling I have ever had, you're suffocating and yet nothing is blocking you except your own body. So Mr. O and I spent a handful of days at my house which my son quickly became aware of how it worked, and whenever he needed me he would step on the hose and cut me off or he would pull on them from another room (it was 50 feet long so it went everywhere). Little smarty pants. Then I was taken off of it and told to take things really easy. Again. Me? Take things easy? Well this time, yes, I am. Apart from a few cleaning outbursts that I had I am a sitting duck, it's just not worth the hassle.
I feel horrible missing so much work, and it's a HUGE stress for me. One because I need money to live and two because I know they are short handed and could use me. But the doctor says no and I have to listen. He thinks I rushed it last time and that's why I ended up sick again. Too much, too soon. And now after only 2 weeks out of the hospital my white blood cell count is outrageously high again which usually indicates infection...back to square one. I am trying not to focus on the numbers so much and just focus on how I feel but sometimes it's hard to do and to say I am a nervous wreck is an understatement. I never know what will happen, my knees and hips hurt SO bad all the time and my stomach has now formed an army against me which I am being sent to a specialist for...another doctor. It's like my mind and body are now two separate people, and they don't talk, or like each other. I am trying to stay positive, what else do I have? I am focusing on all the love and support I have and my beautiful boy. His birthday was during my fevers and I plan on making up for it whether he notices or not, I do.
So that's basically all for now, I'm tired all the time because I am also anemic and the iron treatments I have been getting have done nothing for me yet, but I am listening to the doctor who I have to give a huge shout out to for him and his nurse because they have been absolutely amazing, as are the staff at Rockyview. I never imagined needing so much medical attention, especially at 29 but I must say I couldn't have gotten through it without them. Some days in hospital were so emotional and hard and the nurses would sit with me and let me cry and even hold my hand when I just couldn't take another needle. They truly are amazing!
Everyday does not get better for me, there's no steady incline in my health, each day is different and anything can happen. This is life though. My plan now is not to wait for something to happen, but to enjoy the moments I don't feel sick, tired or sore. They are few and far between but they exist. You can live entire lifetimes in one moment, and it can be amazing or horrifying, but you keep moving forward regardless and keep living. Coming so close to the end a few times now in the last 3 months has really put a lot in perspective, it's hard to wrap my head around death and I'm not ready to go. I'll keep fighting even on the days I am at my worst, I am alive, I can see my son grow up, and it's so worth it. And although Wegeners is not curable and the other things that keep happening can keep happening, I'd take that over not being here. I miss my mom a lot during these hard times and am so mad that she is not here for me, and I can't imagine not being here for my son, or friends or family. Because even though everyone is treading so lightly around me to not worry me, they too have things going on and in their lives those are important too, just because I am sick doesn't mean I don't want to be there for them too. I am here, and God has decided to leave me here, so I want to make sure I make the most out of it for me and for those I love and who love me.
I'm not really sure where to start, maybe from today and I will go backwards? Or maybe I won't? If you're wondering what is with the title of this post I will share, although somewhat hesitantly but after talking to a good friend last night I realize I have to laugh at it or I'll just lose it. So the doctor has me on prednisone, it's a steroid, to keep my kidneys hopefully functioning, and it's a cheap drug with tons of side effects. Apart from possible osteoporosis (spelling?) there are little annoying side effects I didn't mind so much at first but are now driving me mental! Like the breaking out, no amount or high strength anything will fight this acne. They are acne on steroids and they are picky about where they want to live and they make me feel just beautiful. Then there's the mood swings, holy moly rollercoaster ride. Mine unfortunately have taken there position in the super happy to angry and dead silent roles. No tears for this girl unless the angry and silent part has gotten too frustrated and snaps.
My least favorite and most recent finding, is the hair. I wish that it would make my hair grow faster, but no, instead it has just decided to grow in places it never used to exist. And of course they are darker and more obnxious than normal hair. I'm a fuzzy mess! At first I kept telling myself to just leave it, I am sick and it's like a right of passage for getting better, but then I looked too closely at the mirror and realized I was growing a damn mustache! GASP! As someone who made a living off waxing people's body parts I never had to worry about this. So I went through the week debating if I wax it off or leave it. Then my doctor changed the course of action because of my immune system crash last month and said I'd be on prednisone longer than planned, probably another 6 months at least...by then I would have a full grown mustache and could probably participate in Movember. This is unacceptable. Plugged in the wax pot, and now I'm silky and smooth again. I know now I will have to maintain this but it was a small price to pay to feel feminine again. Sometimes outward beauty is the best we can do when our insides are being less than agreeable with us.
So last month, what a horrible time. It started off great! I worked a couple days, then I went to Hinton to visit my family and came home happy and refreshed after what had been a hard couple of months learning to deal with Wegeners and all it's fun little outbursts. The next morning I woke to mega chills...uh oh a fever! 104 degrees! This went on until Sunday (started Wednesday), so I went to the hospital and they gave me some antibiotics, but I kept getting fevers every day of 103 or 104 so Thursday they gave me better drugs and by Sunday with fevers everyday still, back to the hospital. As it turns out my Immune system decided to take a nose dive, I got pneumonia and my lungs collapsed. Then because of this my kidney function that was all the way up to 80% (when they thought it wouldn't reach 60 ever again) dropped down to 40 again. So if it wasn't one thing it was another. While in the hospital I had some severe reactions to GCSF; bone pain. I would rather give birth to a 15 pound baby then experience that again. Bone marrow is not to be taken lightly. OUCH! So finally after 7 days in the hospital again I was sent home but this time with a friend, Mr. Oxygen.
It is not fun relying on something to breathe. In fact when my lungs collapsed in the hospital (not to be too descriptive) I was in the washroom when my oxygen level dropped to 30% and I was gasping for air. Then I started coughing and as I came out of the washroom nearly dying I threw up. Luckily there was oxygen tubes in the room from when I first got there and had a smaller episode, so I quickly put it in my nose and cranked it up. It's definitely the worst feeling I have ever had, you're suffocating and yet nothing is blocking you except your own body. So Mr. O and I spent a handful of days at my house which my son quickly became aware of how it worked, and whenever he needed me he would step on the hose and cut me off or he would pull on them from another room (it was 50 feet long so it went everywhere). Little smarty pants. Then I was taken off of it and told to take things really easy. Again. Me? Take things easy? Well this time, yes, I am. Apart from a few cleaning outbursts that I had I am a sitting duck, it's just not worth the hassle.
I feel horrible missing so much work, and it's a HUGE stress for me. One because I need money to live and two because I know they are short handed and could use me. But the doctor says no and I have to listen. He thinks I rushed it last time and that's why I ended up sick again. Too much, too soon. And now after only 2 weeks out of the hospital my white blood cell count is outrageously high again which usually indicates infection...back to square one. I am trying not to focus on the numbers so much and just focus on how I feel but sometimes it's hard to do and to say I am a nervous wreck is an understatement. I never know what will happen, my knees and hips hurt SO bad all the time and my stomach has now formed an army against me which I am being sent to a specialist for...another doctor. It's like my mind and body are now two separate people, and they don't talk, or like each other. I am trying to stay positive, what else do I have? I am focusing on all the love and support I have and my beautiful boy. His birthday was during my fevers and I plan on making up for it whether he notices or not, I do.
So that's basically all for now, I'm tired all the time because I am also anemic and the iron treatments I have been getting have done nothing for me yet, but I am listening to the doctor who I have to give a huge shout out to for him and his nurse because they have been absolutely amazing, as are the staff at Rockyview. I never imagined needing so much medical attention, especially at 29 but I must say I couldn't have gotten through it without them. Some days in hospital were so emotional and hard and the nurses would sit with me and let me cry and even hold my hand when I just couldn't take another needle. They truly are amazing!
Everyday does not get better for me, there's no steady incline in my health, each day is different and anything can happen. This is life though. My plan now is not to wait for something to happen, but to enjoy the moments I don't feel sick, tired or sore. They are few and far between but they exist. You can live entire lifetimes in one moment, and it can be amazing or horrifying, but you keep moving forward regardless and keep living. Coming so close to the end a few times now in the last 3 months has really put a lot in perspective, it's hard to wrap my head around death and I'm not ready to go. I'll keep fighting even on the days I am at my worst, I am alive, I can see my son grow up, and it's so worth it. And although Wegeners is not curable and the other things that keep happening can keep happening, I'd take that over not being here. I miss my mom a lot during these hard times and am so mad that she is not here for me, and I can't imagine not being here for my son, or friends or family. Because even though everyone is treading so lightly around me to not worry me, they too have things going on and in their lives those are important too, just because I am sick doesn't mean I don't want to be there for them too. I am here, and God has decided to leave me here, so I want to make sure I make the most out of it for me and for those I love and who love me.
Wednesday, August 15, 2012
James Morrison made me do it...
Ok let me explain...I'm sitting at home, sick as usual, listening to James Morrison. I'm trying to destress. I tried cleaning but turns out moving around that much isn't good for me right now and I got dizzy. So instead I'm sitting here taking deep breaths (coughing because they hurt), listening to James tell it like it is, and talking...err..writing to you.
I'm trying to prioritize right now. Somewhere between getting diagnosed with Wegeners and now, I've forgotten that some thing just don't matter, and other things should matter more. Starting most importantly with number one....Me. Selfish as that may sound coming from a single mother, and don't get me wrong, my son is my absolute pride and joy, and often the reason I'm even fighting at all most times, but at the end of the day he needs me too. So I need to make sure I'm at my best. And right now I am not.
I found it really easy to blame the mess that is my life on being sick, and although it hasn't helped, my mom would slap me if she saw how I let things get. Everytime I feel that cold rush I know it's her trying to smack me now. Which is another problem in itself, I really miss her, but that's not what this is about...today.
My whole life I have taken care of myself, and her. Yes she did take care of me by doing the best she could to put a roof over our heads etc. but the care taking I am talking about is emotional, and sometimes physical. And it could have been that upbringing or just how the stars are aligned that makes me this way but I put too much emphasis on other people; how they think (of me), feel (about me), what they could do (to me), do you see the pattern. I worry. ALL THE TIME. I can't stand hurting people, but I know I have and I'm sure it's not the last time, but it's usually not because I wanted to. I don't have all the answers and don't really want to try right now so I chalk it up to insecurities and just overthinking.
In this time of worrying and adding an incurable disease I do all the wrong things, and oddly enough they're usually quite familiar to other situations in my life. Usually just the people and places have changed. I have not. And I feel like I'm sinking into the same old patterns again. So now I've tried saying no a little more, giving myself a little more time to do things that I want to do and not just the boring stuff or favors. I love helping people and making people happy with me, but even some of them have really let me down since I've been sick.
This whole thing is making me realize again, because for some reason I keep needing reminders, that I need to start putting my focus on what really matters, and taking care of my precious gift who will be TWO this weekend. I can't even believe it. His face, his smile, that's what matters. Last night I crawled in bed with him, and he snored away and I just stared at him. That's when the overwhelming feeling to protect him and make sure he never wants for anything, especially love or attention, really sunk in.
I've been thinking about it all morning. Another time I'll try to just regroup and calm down. Slow down in fact. I'm sick, that's undeniable and not going away I know that. I have yet to truly accept it but I will, what I won't accept is that I have to feel weak mentally or emotionally. I am scarred, broken and have lived hundreds of lifetimes in my 29 years, and that has not weakened me, it's just made me hard, and for some people they don't like it. Many people mistake me for a scared, naive and one of those people who is weak, that's just not true. I have just decided to take what I have experienced inwards (yes Doctor Freud I know that's not the answer) but I'm starting to speak up a little more because I have someone else who needs protecting and what kind of role model would I be looking weak.
Being sick doesn't mean that life is over, it just feels that way sometimes. I refuse to let it take me down even though there are days as of late I have and more to come I'm sure. However, I'm going to keep doing what I can to get stronger and what I can't do physically anymore I will do extra emotionally and mentally. You can't tell people what to do or think or feel, and sometimes they will think the worst whether you deserve it or not, but that's their decision to spend their energy on that. And being sick doesn't make me immune to being there for my friends who truly need me. So I'm sick, I still have ears and a heart. And because of all this I've just made more room and time for the people who deserve it, the same ones who made time and make time for me while I've been going through this.
So as James Morrison sang to me, Thank you, I'm a lucky (wo)man, I didn't know what life was, now I understand.
I'm trying to prioritize right now. Somewhere between getting diagnosed with Wegeners and now, I've forgotten that some thing just don't matter, and other things should matter more. Starting most importantly with number one....Me. Selfish as that may sound coming from a single mother, and don't get me wrong, my son is my absolute pride and joy, and often the reason I'm even fighting at all most times, but at the end of the day he needs me too. So I need to make sure I'm at my best. And right now I am not.
I found it really easy to blame the mess that is my life on being sick, and although it hasn't helped, my mom would slap me if she saw how I let things get. Everytime I feel that cold rush I know it's her trying to smack me now. Which is another problem in itself, I really miss her, but that's not what this is about...today.
My whole life I have taken care of myself, and her. Yes she did take care of me by doing the best she could to put a roof over our heads etc. but the care taking I am talking about is emotional, and sometimes physical. And it could have been that upbringing or just how the stars are aligned that makes me this way but I put too much emphasis on other people; how they think (of me), feel (about me), what they could do (to me), do you see the pattern. I worry. ALL THE TIME. I can't stand hurting people, but I know I have and I'm sure it's not the last time, but it's usually not because I wanted to. I don't have all the answers and don't really want to try right now so I chalk it up to insecurities and just overthinking.
In this time of worrying and adding an incurable disease I do all the wrong things, and oddly enough they're usually quite familiar to other situations in my life. Usually just the people and places have changed. I have not. And I feel like I'm sinking into the same old patterns again. So now I've tried saying no a little more, giving myself a little more time to do things that I want to do and not just the boring stuff or favors. I love helping people and making people happy with me, but even some of them have really let me down since I've been sick.
This whole thing is making me realize again, because for some reason I keep needing reminders, that I need to start putting my focus on what really matters, and taking care of my precious gift who will be TWO this weekend. I can't even believe it. His face, his smile, that's what matters. Last night I crawled in bed with him, and he snored away and I just stared at him. That's when the overwhelming feeling to protect him and make sure he never wants for anything, especially love or attention, really sunk in.
I've been thinking about it all morning. Another time I'll try to just regroup and calm down. Slow down in fact. I'm sick, that's undeniable and not going away I know that. I have yet to truly accept it but I will, what I won't accept is that I have to feel weak mentally or emotionally. I am scarred, broken and have lived hundreds of lifetimes in my 29 years, and that has not weakened me, it's just made me hard, and for some people they don't like it. Many people mistake me for a scared, naive and one of those people who is weak, that's just not true. I have just decided to take what I have experienced inwards (yes Doctor Freud I know that's not the answer) but I'm starting to speak up a little more because I have someone else who needs protecting and what kind of role model would I be looking weak.
Being sick doesn't mean that life is over, it just feels that way sometimes. I refuse to let it take me down even though there are days as of late I have and more to come I'm sure. However, I'm going to keep doing what I can to get stronger and what I can't do physically anymore I will do extra emotionally and mentally. You can't tell people what to do or think or feel, and sometimes they will think the worst whether you deserve it or not, but that's their decision to spend their energy on that. And being sick doesn't make me immune to being there for my friends who truly need me. So I'm sick, I still have ears and a heart. And because of all this I've just made more room and time for the people who deserve it, the same ones who made time and make time for me while I've been going through this.
So as James Morrison sang to me, Thank you, I'm a lucky (wo)man, I didn't know what life was, now I understand.
Monday, August 13, 2012
Getting sick...
I've been trying to figure out a way to channel these...these emotions I guess you can call them. The ones I get from being sick, and knowing, and trying to accept, that I always will be.
In some ways I guess it's a good thing that we found out what's wrong because let's face it, for as long as I can think back I was always getting something. However as grateful as I am to be alive right now, it's really hard to count your blessings knowing full well that for the rest of your life you could get the smallest cold and be sent spiraling out of control, which is exactly what happened this week leading me to this point here.
I plan to use this blog as a way to vent and possibly share my story with people who might know what I'm going through and possibly find some guidance along this journey. Although I have amazing support from family and friends, there's nothing like support from people who really know what you're feeling. So without further ado, here is my story.
In April of this year I got pneumonia for the umpteenth time just before my friends wedding. I went to the doctor and got my monthly dose of penecillin pills (I say monthly because I seriously was getting some sort of chest, ear, nose, sinus, all of the above infections almost monthly). They seemed to do the trick, the wedding was a smashing success and I came home unprepared for what the next 6 weeks would hold.
I started getting really tired, and not just a little, but I basically went to work then came home and didn't move all night. The nights when I had my son I would force myself to be a good Mommy which meant the nights without him I was especially tired. I thought I must just be stressed and because my son is notoriously horrible at sleeping through the night etc. etc. I could find a million reasons why I was tired, and because I just finished the penecillin I thought for sure I wasn't sick so why go to the doctor.
That's when I started peeing blood. Sorry for the graphic details but after having a child and this ordeal, I'm not shy. So to the doctor I went for what I assumed to be a bladder infection. After 2 rounds of meds over 2 and half weeks, I was still passing blood, a lot of it, and I told the doctor finally that I was not taking another pill until she figured out two things; 1. Why the meds didn't work and 2. Why am I still peeing blood. She rifled through my numerous bladder tests, again one more thing I was getting almost monthly, and realized that it was not normal (DING DING DING!!!) So an Ultrasound was ordered immediately.
I was getting sicker and more tired by the day. My Ultrasound showed that I had some blood around my kidneys and she said I need to see a specialist. A referral was put in and I just had to wait patiently. In that time I thought I was dying. I had to move and if it weren't for my wonderful friends, I don't know what I would have done. They packed me, moved me and even unpacked some for me. But that's getting off track...
On Friday in late May the doctor told me to keep hanging in there, that she marked my case as Urgent, but with over a million people in one city, I can't imagine that means anything in a specialist's world. That Sunday I woke up with the worst nose bleed I have ever had or seen, I won't get into the details but come Monday I called the doctor's office and left a message about what happened. She called back immediately and sent me to the Emergency room at the hospital with all my test results etc.
After they did all their checks, read my file, looked at my results I was admitted. Suddenly I am cut off from everything. It's a scary feeling. My son was safe, work was notified but still, it's a horrible feeling. After a kidney biopsy and being poked and proded more than I ever could wish on my worst enemy I was diagnosed with Wegener’s granulomatosis, I was in renal failure and had one hour to chose between two treatments; one would mean no more reproduction, two was not so harsh in that way. So I picked two and away we went.
I was in the hospital for a week, lots of medicine and bloodwork. My creatinin level was 350 and kidney function based on my weight and levels was 10 percent. The treatement I took seemed to take luckily and I for now am free from dialysis and I hope it remains that way. I received more treatments, and am on a buffet of daily medications and diet.
A little bit about my disease...
Wegener's is an incurable form of vasculitis (inflammation of blood vessels) that affects the nose lungs, kidneys, and other organs. Due to its end-organ damage, it is life-threatening and requires long-term immunosuppression. Five-year survival is up to 87%, with some of the mortality due to toxicity of treatment.
I highlighted that last line because I wanted to comment on how when I was diagnosed I still really didn't know much about it other than that's what I had, and how we were going to treat it. When I got out and researched it and saw that, I can't explain the panic I felt knowing one that it was incurable and just manageable, and two, that I could have died! And that I have to play everything so safe to ensure that I don't go before my time.
My kidney function has improved a lot, and for tonight that's really all I have in me to type. To say it's over would be great but it's hardly begun. It's emotional, financially hard, and mostly just discouraging because so many more things have come out of this that I'll be sure to get into as days go by.
If you're here because you know me and just wanted to see what I've been up to, thanks :) And if you don't know me but know my pain, please comment so we can get in touch!
In some ways I guess it's a good thing that we found out what's wrong because let's face it, for as long as I can think back I was always getting something. However as grateful as I am to be alive right now, it's really hard to count your blessings knowing full well that for the rest of your life you could get the smallest cold and be sent spiraling out of control, which is exactly what happened this week leading me to this point here.
I plan to use this blog as a way to vent and possibly share my story with people who might know what I'm going through and possibly find some guidance along this journey. Although I have amazing support from family and friends, there's nothing like support from people who really know what you're feeling. So without further ado, here is my story.
In April of this year I got pneumonia for the umpteenth time just before my friends wedding. I went to the doctor and got my monthly dose of penecillin pills (I say monthly because I seriously was getting some sort of chest, ear, nose, sinus, all of the above infections almost monthly). They seemed to do the trick, the wedding was a smashing success and I came home unprepared for what the next 6 weeks would hold.
I started getting really tired, and not just a little, but I basically went to work then came home and didn't move all night. The nights when I had my son I would force myself to be a good Mommy which meant the nights without him I was especially tired. I thought I must just be stressed and because my son is notoriously horrible at sleeping through the night etc. etc. I could find a million reasons why I was tired, and because I just finished the penecillin I thought for sure I wasn't sick so why go to the doctor.
That's when I started peeing blood. Sorry for the graphic details but after having a child and this ordeal, I'm not shy. So to the doctor I went for what I assumed to be a bladder infection. After 2 rounds of meds over 2 and half weeks, I was still passing blood, a lot of it, and I told the doctor finally that I was not taking another pill until she figured out two things; 1. Why the meds didn't work and 2. Why am I still peeing blood. She rifled through my numerous bladder tests, again one more thing I was getting almost monthly, and realized that it was not normal (DING DING DING!!!) So an Ultrasound was ordered immediately.
I was getting sicker and more tired by the day. My Ultrasound showed that I had some blood around my kidneys and she said I need to see a specialist. A referral was put in and I just had to wait patiently. In that time I thought I was dying. I had to move and if it weren't for my wonderful friends, I don't know what I would have done. They packed me, moved me and even unpacked some for me. But that's getting off track...
On Friday in late May the doctor told me to keep hanging in there, that she marked my case as Urgent, but with over a million people in one city, I can't imagine that means anything in a specialist's world. That Sunday I woke up with the worst nose bleed I have ever had or seen, I won't get into the details but come Monday I called the doctor's office and left a message about what happened. She called back immediately and sent me to the Emergency room at the hospital with all my test results etc.
After they did all their checks, read my file, looked at my results I was admitted. Suddenly I am cut off from everything. It's a scary feeling. My son was safe, work was notified but still, it's a horrible feeling. After a kidney biopsy and being poked and proded more than I ever could wish on my worst enemy I was diagnosed with Wegener’s granulomatosis, I was in renal failure and had one hour to chose between two treatments; one would mean no more reproduction, two was not so harsh in that way. So I picked two and away we went.
I was in the hospital for a week, lots of medicine and bloodwork. My creatinin level was 350 and kidney function based on my weight and levels was 10 percent. The treatement I took seemed to take luckily and I for now am free from dialysis and I hope it remains that way. I received more treatments, and am on a buffet of daily medications and diet.
A little bit about my disease...
Wegener's is an incurable form of vasculitis (inflammation of blood vessels) that affects the nose lungs, kidneys, and other organs. Due to its end-organ damage, it is life-threatening and requires long-term immunosuppression. Five-year survival is up to 87%, with some of the mortality due to toxicity of treatment.
I highlighted that last line because I wanted to comment on how when I was diagnosed I still really didn't know much about it other than that's what I had, and how we were going to treat it. When I got out and researched it and saw that, I can't explain the panic I felt knowing one that it was incurable and just manageable, and two, that I could have died! And that I have to play everything so safe to ensure that I don't go before my time.
My kidney function has improved a lot, and for tonight that's really all I have in me to type. To say it's over would be great but it's hardly begun. It's emotional, financially hard, and mostly just discouraging because so many more things have come out of this that I'll be sure to get into as days go by.
If you're here because you know me and just wanted to see what I've been up to, thanks :) And if you don't know me but know my pain, please comment so we can get in touch!
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