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
Wednesday, September 26, 2012
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.
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