A long Journey

Hey Everyone,

So another update, it looks like I won’t be back to blogging anytime soon. My life went off the rails after the last post (almost two years ago).

I’ve had to take a break from blogging and it’s going to be an even longer break than I originally expected. I’m going to keep the blog up for the resources, and maybe one day I’ll be back but to be honest I have no idea when that will be.

😦

I’m still reachable through facebook and G+

Update

Ok, so I’ve been terrible at writing posts lately. So much has been going on.  I started prepping for returning to work. A long hard very hard journey. But I started last monday three half days… ok so it didn’t quite turn out that way, but I did complete two half days of the three so I’m counting that as a success!

It felt so good to be at work even though it really was the hardest thing I did. I’m still battling really painful, exhausting days. Friday was just… not happening. It was one of those fetal position bed ridding crap days where I couldn’t move.

I’m doing a gradual return which means I slowly increase the amount of time at work at a slow pace as my body can handle it. I don’t know if it’ll work but I’m determined to make it. I have to, sitting at home is driving me nuts even though I know I can’t really do much normal activites.

Which brings me to my Saturday. After a horrible day friday much to my surprise Saturday I woke up and had energy… to a level I haven’t had in well I can’t remember how long. It was so weird that at first I was like something is different but I’m not sure what and then kept surprising myself with all the things I was able to accomplish… and of course I’m sure you can imagine I totally over did it. I couldn’t help myself there’s this excitement that builds and you just keep pushing it despite your better judgement. So today I’m a bit more sore but a manageable amount of pain. I’m hoping that the new dose of meds is to thank and that this continues. Having that good of a day gave me hope. Hope of things I had thought I’d never be able to accomplish again. It felt so good…

 

Handling life when it’s a mess

Staying on top of things and even just setting goals has been so hard lately. I want to track my health, remember appointments, get better at not being a big old scatter brain when it comes to putting posts up. Half the problem is that along with the fibro has come what is dubbed “Fibro Fog”… I’ve come to the realization that this is probably why my post (at least to me) seem disorganized ramblings. I have tons of ideas, want to do some much but I crumble down in frustration because I lose track of all those awesome ideas, forget to follow through etc.

I’ve spent the past few days really sitting down and figuring out how to stay organized and combat not only my illness symptoms that make that hard, but also finding a solution that works. I watched organizing videos, reviews etc etc. I settled on starting a paper planner. It’s somewhere I wanted to track not only my appointments, but my health, questions for the doctors (I often forget these even when i do write them down stickies just disappear), money, meals etc etc. I wanted to set daily goals and see if I can achieve them.

I choose to go paper instead of electronic for the pure fact that I have tested many many symptom trackers for Crohn’s (as you’ve seen my reviews) but the thought of adding another tracker for Fibromyalgia symptoms seemed cumbersome. I also found I wasn’t actually using my electronic tracking devices because either I forget to, or the light on my ipad bugs me that day. The other problem was how to print and bring with me to the doctors. I wanted to keep things super simple with the least amount of work.

So I decided paper where i can put pen to paper might work better especially if it follows me around. There in lied the next challenge. There are sooooooooooo many options. I went to Staples, Wal-Mart, Dollerama, My Calendar Club, Chapters etc etc. I spread it out over a week but I was left so incredibly frustrated. When getting a planner the choice in off season sucks. Also the way these options weren’t easily converted into all the things I wanted to use them for. They were for business, or mom’s on the go. There just wasn’t enough room to write.

After watching a few organizational planner video’s on youtube I started getting some ideas for a particular weekly spread and how I could convert it to fit my needs. Problem was I couldn’t find the layout in stores which left me with a pickle. There was no way I could just pick up and start. I’d have to order and wait online for my planner.

Although the waiting sucks I’ve placed my order today for the Plum Paper Family Planner, with the monthly cleaning checklist dispersed through out. What I like about this planner is that it’s gotten good reviews, there’s a few different layout options and well I have exactly how I’m going to tailor it to fit my Chronically Ill needs.  That’s the thing I never saw when doing my research, all the stuff on organizing etc is centered around family’s students etc etc, I didn’t see myself being a chronically ill woman in them so it was a bit difficult in finding something that I could tailor to me. It actually got me thinking that once i get this planner and set it up I’m going to try and share it with you guys.

Anywho that’s what’s going on in my life now. Trying to get my shit together and stop forgetting everything under the sun!

New Journey

Before i get into my reflections on my busy medical journey. Just want to say best date night so far was last night be curled up with my sweetie watching the IBD roundtable. If you didn’t get a chance to watch it please go over to cceffect.org and take a peek it was an amazing show!

So this month has been a busy month. Bone scan, Ultrasounds and lots and lots of doctor visits. So I was recently referred to a Rhematologist to investigate the possibility of me having lupus. My hematologist has been suggesting that since 2012 and well this past year has well been the challenge. I have met with my new doc on the team twice now and yesterday was the big results day…

You’d think I was prepared… I thought i was prepared… but as soon as the quiet moment last night as I laid in bed cuddling it hit me harder than I expected and I just broke down.

I apparently “clinically” have fibromyalgia. He waiting on making it official since I have Crohn’s disease so he wants to monitor a bit more while treating for fibromyalgia.

I’m not stranger to the term, but now I find myself overwhelmed and looking critically at the information out there. In some ways I’m so confused there doesn’t even seem to be a straight answer on what exactly it is other than a description of symptoms. They don’t even seem to know what causes it but unlike Crohn’s it seems this is so much more behind in terms of understanding by the medical community which is leaving me confused.

I literally got no more information other than it’s extremely difficult to treat, and that’s it… No info brochures no nothing. Not even a concise explanation of what it was. Now I like my new doc and I’m hoping it’s just because little is understood. I’ve been googling and was quite surprised to see the history of Fibromyalgia… most medications were only approved in the 2000’s. Thankfully there seems to be two support groups here in my area and I’m hoping that they are much more informative about it…

All that said… I can’t help but feel like isn’t Crohn’s enough…. why do I have to deal with two incurable diseases (ok I think fibro is classified a “condition”? not a disease but you know what I mean)… haven’t I already done my dues with Crohn’s… It seems quite unfair and I really wish there was more information out there.

Head on Over to Inflamed and Untamed to read the awesome recap of the facebook chat with Dr. Higgins.

http://www.inflamed-and-untamed.com/post/112606127918/recap-dr-higgins-answered-your-questions-on?utm_content=buffer5255d&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Finance 101 – Overcoming our Money Worries

The first step in dealing with finances and which I know I struggle with is overcoming the negative thinking…

“I can’t do this, it’s too overwhelming”, “I don’t make enough”, “I’m not smart enough”, “Financial security is out of my reach”…

These are just some of the things I know I’ve struggled with and although sometimes these are true statements, don’t let them stop you. What I’ve come to realize is that finances is hard for everyone, but especially important for us with Chronic Illnesses. Which is why I’m going to share what I try to do… and by no means am I successful at this 100% of the time. In fact I probably fail and get set backs most of the time but I still work on it.

Most of handling your finances is educating yourself on the financial system, basic skills like budgeting and remembering to “pay yourself first”… which Is where I struggle the most. You are smart enough and you will eventually get to a spot where you feel like you are in control. If you’re like me there’s so much that you don’t have control over that finances can be a place where you can assert a bit of control over. Now that doesn’t mean you aren’t going to need help, because I still do and a lot of us are adult dependants.

It starts with positive thinking

1. You can do this!

2. Spend less than you earn (this is hard sometimes for us because of our medical bills or lack of income)

3. Pay yourself First (saving saving saving! If you start out like this it will help make the parts where your income is low or non existent easier to navigate)

 

Banish these negative statements:

1. I don’t have time

Make it a priority it will save you some stress later on trust me! and it’s not that time consuming.

2. I’m not smart enough

Yes you are! Get curious read about it, the basics aren’t that hard. I suggest reading the Wealthy Barber by David Chilton. It’s an easy read and I always brush it off when I’m feeling overwhelmed. He has a style of writing that will help you trust me.

3. My spouse, or parents will take care of me

Although that might be true in the short term, they may not always be in a position to help you. Having the basic skills will ease the financial stress. Work with them and use them as a support team, but try as much as possible to educate yourself and prepare for the day when they may not be around to help.

 

I hope this helps? Anyways I’ll try to get some more posts with some financial tips and tricks. Surround yourself with your support system and have discussions with them, have a plan, and educate yourself.

All about Teeth

I admit I love my dentist! Probably one of the least talked about aspect of our medical health is it’s link to our mouth or at least I don’t see many talking about how Crohn’s or other chronic illnesses affect their teeth. But it does… or at least in my case. It’s funny because every time I see my dentist we get into interesting conversations usually because my mouth is falling apart! lol. The worst part is as my dentist puts it it’s not my fault. No amount of brushing and flossing would prevent my teeth from literally breaking so I often see him for emergency fillings, of my fillings because no matter how good a job he does eventually my fillings come out.

Initially I posted about how GERD can cause this and considering at the time I was suffering from some stomach inflammation due to my Crohn’s I was put on Dexilant to control the acid of my “silent” GERD.  However being months on this and still having some teeth issues I updated him on my medical situation.

He’s known I’ve been on disability leave and I keep my dentist apprised of my medical history which I’m really glad that I do. So today I was telling him I have a new doc on the team a Rhematologist who’s running test for lupus but thinks it’s most likely Fibromyalgia. Well… didn’t that start a most interesting conversation. Apparently Lupus can deteriorate your teeth making them weak and “peel”. He indicated that he’d be very interested in knowing the outcome because my mouth does present some lupus indicators from what he’s seen in his other lupus patients. He’s apparently logged the mouth effects and currently has 4 patients with lupus that he has a treatment plan and can help and identify stages of deterioration in the teeth. His go to is Crown’s because of the build in support they offer as opposed to fillings which wind up being stronger than the teeth (which as he puts it is backwards, it should be the tooth that’s strong supporting your filling, not your filling supporting your tooth).

Ah my dentist. I love how he always keeps up to date on his profession and isn’t afraid to educate and discuss how medical conditions can affect one’s teeth. I hope he doesn’t retire anytime soon!

Can’t catch a break?

Have you ever just felt like you couldn’t catch a break to save your life? I’m feeling a little overwhelmed. Here I am desperately trying to get back to work and one thing is standing in my way. Stress…

Stress negatively affects your health we all know this, but for those who are chronically ill like myself even the smallest of stresses can have a huge impact. I was dead set on returning to work March 2nd and the closer it gets to that date the farther I seem from it with so many obstacles in my way.

One of those big obstacles is finances. Here’s what they don’t tell you when you get sick… kiss your financials good bye! I’ve been moderately ok with financial management but every time I come even close to becoming debt free I have a huge set back. Back in 2011 I was so close I purchased my beloved home three months in disability leave… that first leave I never really recovered from when I had my second and longest disability leave which is this one January 2014.  Since then the mistakes of red tape and bureaucracy have impacted me so heavily.

See they didn’t stop my pay, there was a mix up with my T4 slips, and I’m now looking at some major repercussions to the mistakes of others… I honestly don’t know what to do anymore. Being single with disability insurance being my only income I’ve just received today some horrible financial news.

When i do go back to work 100% of what my paycheck will be will be applied to the money they erroneously paid me Jan-Feb 2014 (which at the time I begged them to take back).  So here’s my choice… go back to work and lose my house and everything, or stay off and lose my sanity…

Neither option is appealing… I don’t even know why I’m sharing this other than being sick is so not glamorous on any level. Let’s face it it’s embarrassing sharing this. So why am I? Because if you’re sick or healthy please please please save save save. You never know what will happen and trust me, it can get very bad very fast.

All this stress isn’t good. I’ve been more tired, more sore, and just way to overwhelmed. and let’s face it there’s no fairy godmother around the corner who’s going to help me get out of this mess… My only hope is to little by little chip away at it and hope to god I don’t get worse health news or insurance news…

My only wish is really that you take my experience and research how to manage your money, save for a rainy day, and try to live as debt free as possible. Good luck my dear readers!

Pain Pain and more Pain

This morning I’m still processing the news of yesterday. I saw my hematologist and my new rhematologist yesterday. A day that really wasn’t physically hard but left me in so much pain I couldn’t believe it. It started me having doubts that returning to work would be a good thing.

I have a nasty habit of making things harder for myself. You’d think I’d learn to stop pushing myself so hard. A few days ago my boss emailed me to see if my half days would be mornings or afternoons, strongly suggesting afternoons would work better for them. I have to admit afternoons would be much more easier for me to deal with but there was a small part of me up until yesterday that was fighting the suggestion. Why should I make things easier for them? My little stubborn part was digging her heels in and just wanted to prove everyone she could be the same person she was a year ago. The truth is though afternoons would be sooooooo much easier for me to cope with that I don’t know why I want to fight it. After last night I started seeing all the little ways I fight the “easier” for me ways too. I’ve never been a fan of pain medication and will not take it even when really should… but last night I was so exhausted and in so much pain that if i didn’t take medication there was no way I’d sleep…

I’m still getting used to this idea that I don’t have to always take the stubborn push through it way, but that sometimes I really should take the easy way and take the help… It’s funny how still to this day I fight that in small ways. Still fight for the lost me to somehow prove to myself she’s still buried in there somewhere.

So yesterday was an eye opener to say the least. My one doctor thinks I’m going back too early to work. She’d like to see my blood results specifically my red blood cell size improve before going back. And the new rhematologist… well he’s doing tests (and bone scans) to rule out lupus but he actually thinks I have Fibromyalgia…

Either way I think some help is on the way with this new doctor.

Good news just keeps on coming

Things definitely seem to be turning around for the better in 2015 that’s for sure.

Friday I got a phone call from my newest Doc on the team to make an appointment. Tuesday shall be a busy day. I’m off to see my hematologist to check my iron levels (crossing fingers that they aren’t low) and then off to meet the new Rheumatologist!

Since my hematologist has been suggesting for years now that I may have early stages of lupus my family doctor had followed her suggestion and referred me to a Rheumatologist to investigate the mystery pain that every other doc says can’t possibly be my spleen (despite the fact it’s located where the spleen is). So I’m looking forward to maybe having answers on that front. It couldn’t come at a better time too. I had largely given up that i’d ever get answers to be honest and if you’ve ever had a situation where you couldn’t get answers you know just how hard it is. Any answer is always better than scratching heads.

For the past few weeks my body has been more achy, and my pesky little spot increasing in pain. Despite this I’ve been pushing myself, which i keep getting reminded not to do (um… kind of really hard because I have cabin fever from a year of being housebound). I hope that i’m not getting my hopes up too high but it’d be really nice to at least have a pain management discussion.  After a year of living in pain I’ve gotten pretty good at masking it, working through it, and resting when I need to. But it be kind of nice to have a vacation from it…

Pain is a hard thing to deal with not only for me but those in my life. Those that care about me either don’t understand, or can see it and feel helpless themselves. It’s hard because often i feel like I’m a burden to those around me so I ask little. It’s become so normal for me that I don’t realize I’m doing it anymore.

I have to say though that this past year has brought new friends to me, old friends closer and I’m truly blessed to have fantastic people in my life!