Sunday, February 28, 2016

Back and Worse Than Ever


I've been meaning to write a blog post for the last week and haven't gotten around to doing so. Mainly because I wasn't sure how to address what I've been wanting to talk about. Honestly, I'm still not sure but I think it's time. I've decided it's time because I'm sitting here at 1:04pm and I've just woken up. I couldn't fall asleep until around 5am because of the pain. 


I guess because I'm not sure how to introduce this topic, I'll just jump right into it without sugar-coating anything. Because really, life doesn't sugar coat things. About three weeks ago I began getting some oh so familiar pains in my lower abdomen and pelvic region. It started with some twinges here and there and excalated into tugging and pulling sensations that would double me over suddenly. Then after a couple weeks of that, hip pains, leg pains, etc. It's back. The only thing I could think is "How come when I finally figure out one thing, it comes back to haunt me again?".


Endosalpingiosis.


Last April I underwent a surgery to remove what we thought was something called Endometriosis from my uterus, bladder and surrounding tissue. Turns out that after the biopsy results came back the tissues removed (in the form of cysts and small bleeding tumors) were actually something called Endosalpingiosis. Which is basically cyst-like tumors made up of Fallopian tube tissue. Quite random. And quite painful if you ask me. Because of this, my specialist wasn't sure how to proceed. He told me that he had never seen this before in any of his patients and that it was something he had heard of in medical school but was specifically told that he would very likely never see it. And I had it. Have it.



After this surgery there were ups and downs and complications. Post-op infections, bladder and kidney infections, pain, etc. Eventually after a few, long months we got it under control. I began a stronger dose of birth control to regulate periods (which are really brutal when you have a gynecological disease like this one), balance hormones and to altogether keep me from menstruating. Sounds great right? The problem is, with a body like mine, not menstruating only works for so long. So I've ended up in pain. I have cysts forming that I can literally feel putting pressure on my left ovary and bladder. And the pain began to be a constant bother again. Last time this happened, we had to stop my birth control in order to let my body regulate again and basically 'get this nonsense out of it's system" which is a lengthy and very painful process. So, that's what I've had to do again.


Let me just say this... It's insane how quickly my body is ready to jump back into attacking me. Not even twelve full hours after missing my dose of birth control, I woke up in agony with cramps radiating from the bottom of my ribs all the way to my hips. Including my abdomen, lower back, bum, thighs, everywhere. This was yesterday morning. Since then, I've been either bed or couch-ridden, permantely attched to a heating pad on HIGH and popping pain killers like candy. Because this is how we get through. If you've ever had menstrual cramps, you know the pain. But imagine that pain multiplied by about 15. My mother had the same types of pains when she was younger (before she had a hysterectomy to rid herself of it finally). My mother has said to me on multiple occasions that the pain she felt every month was exactly equivalent to the pain she felt during labour. Literally child birth pains, every damn month. So, that's pretty much what I'm experiencing right now except for this is just the beginning. Because, lucky me, I get a menstrual cycle that lasts for about 7+ days.


You see now why I've had a slightly difficult time approaching this topic? Ha. So, long story short -- if any of you need me, want to catch up, whatever.. I'll be spending the next week on the couch with my heating pad and ready for some entertainment.



** Sidenote: About three hours after writing this, I had another thought. It's horrible and terrifying that so many woman have to suffer with conditions like mine. Endometriosis, PCOS and endosalpingiosis are nothing to mess with. They ravage our bodies with pain, cysts, tumors, fibroids. It's awful. And there is no cure. It's so awful that all day today I've been wishing to have a hysterectomy and that's saying a lot coming from someone who knows she wants to have kids someday. When I went to the bathroom and looked in the mirror, I realized that my entire stomach is literally burnt. Patchy, red, and burnt from the amount of heat I've had to apply to dull the ache of the cramping and pain I'm feeling. It is NOT okay that so many women have to go through this and be subjected to this. It is so important that more awareness be raised and a cure be found. **

Friday, February 19, 2016

I Can't Brain Today

"Brain fog is defined as a feeling of being somewhat disconnected or spaced out, mentally confused and lacking clarity, focus and concentration. Other symptoms may include a decrease in short-term memory, reduced attention span and the onset of forgetfulness"


If you've ever experienced a concussion you may have experienced some brain fog. What's really frustrating is when you experience brain fog on the regular without an injury provoking it. Sometimes I think I'm doing really well and making improvements and then the most ridiculous things happen that set me back again. Today, I realized that my brain fog is getting a lot worse. You when when you're overtired and you start doing things that just don't really make sense? Usually when that happens, we just get some sleep and it's better in the morning. But true brain fog is a whole other thing...


Have you ever walked up to a microwave and entered your ATM pin? I have. It's things like this that happen on the regular that make us feel like we are losing our minds.


Yesteday, I was looking all over the place for the butter. Someone had bought grocceries the night before and I put them away. I knew that there was butter. I knew I had put it away but for the life of me, I couldn't find it. It wasn't where I normally put the butter. I looked all through the fridge, in all the cupboards, all over the kitchen and even went outside and looked in the van incase it had fallen out of the bag. But I remembered holding the butter in my hand and putting it away. Eventually, I gave up because I couldn't find the butter. Later, my dad told me that he found the butter. It was standing up on it's end in the freezer with the frozen juices. Because apparently I put it there.


Today, I went to the freezer to get out the chicken breasts that I needed to make dinner and after pulling them out and setting them on the counter I realized that there was entire head of cauliflower in the freezer. Frozen solid. I had also apparently put the cauliflower away in the freezer.


It's things like this that make me wonder how often these little things happen without me even realizing.. It is infuriating when you realize that you've made these silly mistakes. It's embarassing and frustrating and makes you want to yell at yourself for being so stupid. But, it's also kind of hilarious at the same time. I figure, if I can't laugh about the little things, my health problems will destroy me. So, I'm learning to laugh through the frustration and through the moments where I feel as if I may be losing my mind. 


It's a process though, learning to live with brain fog. Like when you leave a message for someone on their phone and try to tell them what number to call you back at and you completely blank.... because you cannot for the life of you remember your own phone number. And then there's the awkward part where you don't want to leave a message saying, "Hey call me back at ........ uh.... Actually I have no idea what my phone number is, so bye..." Because this is seriously what happens.


People ask me questions all the time about why I get anxiety in social situations or anxiety about driving a vehicle. It's because I literally panic when I have to talk to someone that I'm not used to talking to because my brain is foggy and I trip over my words and I stutter and mix up the order of my sentences. I sound like a paniced little child trying to get out my thoughts. Why don't I drive anymore? Because I can't trust myself to be safe on the road. I can't remember to go the right speed, look at the street signs, stay on the road, remember to keep an eye on the other cars around me. I don't trust my memory or my thought processing enough to drive safely. My thoughts jumble up in my head and I can't remember what I need to be doing or why I'm doing it. How am I to be trusted driving a vehicle when I get up to walk to the washroom and end up closing the door on myself? 

(I am literally laughing out loud as I write this because I know how crazy it sounds)


I'm trying to move forward and to do the best that I can. But there's some things that I just need to do differently than others and I'm learning that that's okay. Your journey won't always make sense to everyone else and that is completely okay. As long as your journey makes sense to you. Celebrate the little victories, laugh through the confusion and the frustration as much as you can and take care of yourself the best way you know how.

Tuesday, February 9, 2016

A Little Bit Of Good News

I've been meaning to write this post all week. I've also been avoiding writing this post all week. The thing is, I need to write about something wonderful that has happened and I am not in a wonderful kind of mood. Amongst the wreakage of the past couple of weeks, something wonderful happened and I'm going to take the next little while to try to focus on the wonderful. The good. The blessings.


As many of you already know, I have been hoping to have a special test done that can only be done in the states. Which means it's going to cost me a lot to have done seeing as I am Canadian. There's all sorts of hoops to jump through such as finances and finding a doctor or naturopath who will sign off on these tests and help me to decifer the results. I was planning on doing some fundrasier and hoping to obtain some funds so that my parent's and I would only have to pay for half of the test. But, someone I know mentioned to me that they were concerned about having lyme disease themselves. Upon hearing this, I gathered all the information I had and passed it along. Lyme disease is hard when you don't know the ins and outs of how it all works and how behind the Canadian government is in dealing with it and in diagnosing it. 


After this, I was informed that this kind and generous person was offering to pay for my testing in full. I think that I was literally in shock when I heard the news. Part of me wanted to cry happy tears but part of me felt so shocked and out of it that I just couldn't react. After a few hours of thinking about how amazing this is, I made a facebook post to spread the news that my testing was going to paid for. It was so nice to see all the support and to see all the people that were happy for me for getting somewhere. Now I'm onto searching for a doctor or naturopath that is Lyme Literate. I had the name of a great naturopath that would help but it turns out we're having the worst timing because shes about to go on maternity leave. So, I'm back to searching and hoping soon that I can find a naturopath and get these tests done!!

So yay for happy news!


Unfortunatley these past few weeks have been very stressful and difficult for me, and I don't want to bore you with those details because some of them are very personal and some of them are stressors that just aren't my story to tell. But I would appreciate any prayers or well wishes that you all have.