Just because you can't see it...

Apparently my ability to keep consistent writing is lacking tremendously.

For those of you who are just tuning in, this is my blog for sharing my journey through life as a "sick" person. A safe place where I can vent about the pains, symptoms and side effects I experience while I live with Chronic kidney disease, Wegener's Granulomatosis and iron deficient anemia. Bluntly put, they all suck, they all cause a laundry list of issues and the most common denominator of them all....they're invisible to the human eye, meaning that no one can see it, and talking about it just sounds like complaining.

Here's a little history on the issues at hand:

Wegener's - uncommon disease that inflames blood vessels and thus restricts blood flow to organs. Most commonly kidneys and lungs which I had the un-pleasure of experiencing. Which bring me to...

Chronic Kidney disease - pretty self explanatory, but basically your kidneys are you filter for a lot of things and with kidney disease, it loses it's ability to filter and thus you get a build up of trash your body shouldn't have in it. I was in renal failure but was successful with 3 very strong treatments and have been in remission though it's like a roller coaster of good and bad days.

Anemia - my body hates iron, in fact it hates it so much that I am now on my THIRD round of venofer treatments through IV because it's the only way it seems to stay for any amount of time. I have to keep going every two weeks until my ferritin reaches 200...it's currently at 12 (started at 6).

So now that you're up to date on the science of my pain, let me do what I came here to do...vent. The symptoms of all three diseases are annoying to put it simply. They are constant and irritating, they hinder day to day life yet they remain just under any radar of actually showing much for signs thus giving people a pretty good impression that I'm not "that" sick, and I'm probably just coming off as an extremely bad hypochondriac or that I just want attention. I can tell you from my early teenage years as a hypochondriac, I am definitely not faking this now.

The worst thing of all of them is the fatigue. Most people on a day to day basis are tired, I totally get that. Fatigue related to illness however is much different. And I had a baby and went through weeks of sleeplessness so I feel like I can say that fairly. Imagine getting 12-14 hours of sleep a night, having an hour-2 hours nap during the day and still being tired. And I mean your whole body is tired, your mind is always foggy and memory starts to get really bad. It's like you're carrying lead weights around your ankles all day. No matter what vitamins you take, or how much sleep and rest you get, you are just a walking zombie. It is so frustrating because I try to be quite active and it takes the fun away when I feel like I'm just trying to "get through it" so I can sleep. I fall asleep during movies. And it makes me really grumpy which for those around me can tell you, it's not very nice.

I feel like I am always yelling and always thinking about how nice it would feel to just lay down. It's really hard going through this one because it dramatically affects my mood and ability to keep up and have fun in things I once used to do without effort.

The rest of the symptoms are things like weakness, sore joints, water retention, sleeplessness, headaches, appetite ups and downs, weight gain, weight loss....etc. etc. They may seem like such little things but when you put them all together, it feels like I would be better off in a cabin in the woods all alone where no one has to "deal with me". I feel like most times people try and avoid eye contact because you never know if my mood is up or down. That's the worst part of all, feeling so much at once and no matter how hard I try, I can't "snap out of it" when I'm in a mood.

I feel like I am annoying and hurting those I love, and making people feel like I don't care about them because I am terrible keeping in contact with people because I'm always too tired or sore etc. to talk. My memory is terrible and makes it seem like I don't listen and thus don't care. None of these are me. I had a great memory before, I could sleep very little and still have great days. I smiled more and worried much less. I guess what I feel is that I'm no longer me. I'm a different version of myself and there's no treatments for anything I have other than iron pills and vitamins. It's a lonely feeling when you are sick and nothing is significant enough for people to understand.

So for those who may read this, the people I love, I hope they understand that I know what is wrong, and I'm trying to figure out a better way to manage it, but I'm really tired too so it's taking a little while. I'm still in this body somewhere, I am just trying to get through to her.

A New Year approaches

“Hope Smiles from the threshold of the year to come, Whispering 'it will be happier'...” ― Alfred Tennyson

To start off, I realize I hadn't updated on my appointment, turns out there were many lumps but none that were to be of any concern *HAPPY DANCE*. It was a huge relief to say the least.

My kidney function has started decreasing again and my anemia is at an all time low, so another appointment with another specialist is set for the New Year. Hopefully this time we'll get a solution instead of just treating the symptoms. A day when I wake up feeling rested and well is all I want for 2015. The problem with being sick all the time like this is that it's not visible to everyone else, they can't see exhaustion and fatigue that comes even after a full nights rest, or nausea all day because my body is so low in iron and blood. The aches and pains from the vasculitis that flares up. All anyone can see or hear is me complaining that I'm tired or sore, so instead I say nothing to ensure I'm not sounding like a broken record and I suffer in silence. I cry at night to relieve myself of the pain that builds up all day pretending I am okay. Pretending that I couldn't lay down on my desk and sleep, or anywhere for that matter at any time in the day.

I'm not trying to complain here, just letting it out, like I always have on here. This is my place to go and say that sometimes I am not alright, and I'm tired. My point is that I don't want to feel this way anymore, and I am hoping that the new specialist will help me so I can have energy again to keep up with life.

The last year has been the hardest yet most rewarding year to date. I have struggled with the change in finances from my move, but now I have landed in a great position and I know things will start to look up in the New Year, at least I am working hard that they do, they have to right?

I've been blessed with the greatest loves I could ever have hoped for; my son and my boyfriend. They've kept me going when all I wanted to do was curl up in a ball and hide away. Even without realizing it, they've been my saving grace more than once this year. This year I have learned how to accept help, and even harder I have learned to ask for it. That's been the biggest lesson of all. And I still don't like that I had to go that route, I was and am thankful that those I leaned on had no problem helping me back up. I am so grateful.

I've slowly began to write again. I feel as though I have found inspiration again, or maybe it's the fact I have become less afraid to put my feelings on paper. Either way, I have a story to tell, maybe just to myself, but nonetheless it must come out so that I can move on.

I don't have any "resolutions" for the New Year, but I definitely plan to keep working hard to make my life in NS work for my son and I. I will continue to love unconditionally and without fear. Whatever I need to do to feel better physically with my health, I will work at it. And most importantly I will keep remembering what is important and what I have had to let go of will stay in 2014.

I have hope, hope that every day will get better than it has been. Hope that after 31 years I finally have an understanding on where I am and where I want to be. It's not about having a better year, it's about living better each and every day. And that's what I am going to keep doing. One day at a time.

Lump-date...see what I did there

Well for those of you following, or just me alone to vent, my appointment was set for August 13th. 29 more days. I've told a few people about it because I needed to get it off my chest (no pun intended). Of course they all tell me not to worry until I actually know, and I get that, if I worry this whole time for 29 days and it's nothing, then I wasted all that time and energy negatively. If I don't worry however, and it is something serious then I feel like I won't feel prepared. It's messy, the thoughts that run through my head. It's all hard to make sense of.

Part of me says "just don't think about it until you go for your appointment", the other part says "start writing letters and keeping lots of notes and pictures for your son". It's terrible I know to think that, and the extremes in my mind are unbearable at times. At times I think I've made myself sick worrying and other times I am so happy to just be in the moment in case it all changes soon that I look like I'm going crazy.

How do I not worry and yet prepare myself just in case? I know I'm probably making this so much bigger than it needs to be, but how can I not? I went in on a whim because something just seemed weird, and sure enough it was actually something. Let's hope it's just a fatty lump of nothing.

In the meantime I have been driving myself crazy, and it affects everything and everyone around me. I don't even want to be around me right now! My poor son and boyfriend I wish I could just let them in my head for a few moments to understand what I am feeling and so they know it won't last. And that I love them. Oh how I love them.

Once upon a time, not that long ago I had all the confidence in the world. The last few months between some unfortunate circumstances and deaths in the family I feel like I've lost ability to find any worth in myself. And it doesn't just hurt me, it hurts the ones I love because they feel like something is always wrong. I know it's temporary and all of this is just a test, but I hope I can get through it before I start pushing people away.

One day at a time. And then 29 more. I hope it goes by fast.

What the lump?!

It's been awhile since I have posted. My Wegener's and Kidneys have been in remission for almost a year now! Joy. Though here I am, so there must be something. There is. Or at least there might be. When I blogged during my last bout of health troubles I found it extremely healing so here I am. And maybe it will be for nothing. I hope so.


Lately I have been getting headaches, a lot of them. I never used to get any so it's been a little unbearable at times. While laying in bed the other night, out of the blue I looked at my boyfriend and said "I think I feel a lump". I poked around my chest and armpit a bit on both sides but couldn't really tell what I was feeling (which reminds me, get to know your body), but I just couldn't shake it. For the past 6 months of so I have been really tired, getting a lot of headaches and had this weird feeling on the right side of my chest. It wasn't pain or anything, just a weird feeling. I chalked it up to playing softball or lifting my almost 4 year old etc. etc. The same thing I did when I had kidney pain and kept blaming it on other things.


My wonderful boyfriend said "will you go to the doctor"? And I said yes. Then he said (he knows me so well) "When? Tomorrow?" In order to avoid a lecture I would surely deserve if I said maybe, I said yes. He then made me promise, and I won't break a promise.


The next day, Tuesday (3 days ago) I went to the walk in by my house. I don't have a family doctor yet so it was the best I could do. I went in and explained that I just felt weird and I thought something was wrong, he looked a little annoyed as I'm sure many people think the worst in these cases, but he told me to take off my top and he would do an exam. He and the nurse came back in and away he went poking around. As I mentioned it doesn't hurt, it's just uncomfortable on the right side. I could almost tell right away he found something when he did the left side in two seconds and kept going back to the right.


"You have a lump in your right breast". Heart stops. Not that I should have been surprised, I mean that's why I went in, but I guess I thought I was being a worrier and he would just say I'm fine. We talked about family history, and where it feels sore etc. So now there's a lump there and one in my armpit. The referral to go for the dreaded mammogram has been sent and a possible biopsy as well. I called yesterday and they said it could take a week or so to find out when my appointment will be, a week feels like an eternity.


Stupidly I did the one thing you should never do when you don't have answers, you're saying it in your head as you read this. I Google'd breast cancer, my symptoms, the testing they do etc. Needless to say I spent two hours last night texting my boyfriend because my head was overflowing with worry. He said it, and I agreed, there's no reason to worry until we know, because if it is nothing (which I am sure it's just a cyst or something easily handled) then I've wasted hours or days worrying for nothing. It's easier said then done but I am trying to stay positive.


The week before my mom passed away we had a visit, she told me the doctor found lumps in her breast and that she was worried and didn't feel like she had much time left. Unfortunately for her she was right, and never made it in for those tests so I am really curious what it was and if it's what I have to. Of course my mind is working in overdrive so I have thought about everything.


It's Friday, so I don't suspect I will hear about my appointment until mid next week. In the meantime I am going to try and keep busy and just spend time with those I love. Trying not to worry that soon everything could be changed. What a tricky situation. There's never a good way to handle "you might have cancer", so instead, I will keep going forward as I have with everything else I have faced thus far and be confident that no matter what it is, I will handle it and have people who will help me through it.


I will be in touch as things move forward. Wish me luck!

The older we get....

Well it happened, I passed another milestone in life. One that last year I wasn't sure I would make. I turned another year older. And I turned 30. To some people it's not a big deal, or other than it being a big year, doesn't hold much value. For me it's something I wasn't even sure I would have a chance to experience.

Last year, on two separate occasions my life was on the line so to speak. To everyone on the outside my Facebook updates from the hospital, and my physical appearance gave many people an understanding that it wasn't a big deal and I was just fine. The real reason behind the updates were to try and pretend I was. I didn't want people worrying, and especially not feeling sorry for me. It worked a little too well.

The last year has been a huge struggle for me; at home, at work and just in every day life. The trauma those experiences caused resulted in even more illness from stress and anxiety. Suddenly the simple and every day tasks like getting out of bed, leaving the house for work, or to run errands or just get out were near impossible. Facing death twice in one summer did not enlighten me to live each day to the fullest, instead the opposite, it created such worry and anxiety about the reality that death is everywhere I couldn't leave the house.

So I was staying home a lot. Losing touch with friends and family and trying to stay calm. I believed and still do to some extent that at any second I will just drop dead. When you fear absolutely every possibility in the world, the world becomes really really small. I have always suffered with sleep problems since I was 17, but this kicked it up by 100. I can't fall asleep, stay asleep and when I am asleep my dreams are so realistic I feel tired from them when I wake up EVERY. SINGLE. NIGHT.

Recently I found out I am celiac, which essentially I just have a really healthy eating lifestyle now and it's been great! Hard now and then but for the most part I have worked out the cravings. Since it finally started helping clear up issues I'd had for years I decided to go see someone for my insides. Not my actual insides, but rather my mind. My thoughts and fears that were controlling me.

I shared my entire life story with a woman and a clipboard for 3 hours. And afterwards I have never felt more tired, and the nightmares came flooding in like I had never experienced before. Old memories I had pushed away were brand new again. I thought I had made a mistake, but as a few days passed I realized it was time to start letting my pain out. Stop pretending it's all okay. Because it's not.

I go and talk to someone every few weeks right now and have finally been able to see the world as less of a miserable place. Every week is better but every day is different. It's a very hard thing to admit that you are not okay all the time, but it takes a tremendous amount of stress off saying it because then people hopefully see that everyone is fighting some sort of battle and their expectations of you finally change. When people do not have physical characteristics of illness, or they “seem fine”, don't assume they are. And if they have a bad day, don't make it about you for f*&^ sakes! Chances are their battle is stemming from something much more problematic than what is visible.

Turning 30 is just another birthday. But it's a year I am thankful to be here for, and happy to go outside for. It's a reminder that when things seem really hard, embrace them, and don't be ashamed of your problems, because they are yours to feel and handle. They will make you better someday and somehow. Those who are meant to stay will. Trust your struggle.

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.

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.