Tuesday, June 23, 2015

Pressing On

I would love to say that over the past week things have improved but sadly, this life is not always what we had hoped it would be. The last two days in particular, and today, have been agonizing. I did think for about a day that maybe things were improving. I had been having sudden onsets of menstrual and pelvic pain that would last hours at a time, then would leave. Then would come again a couple days later. But I had a lull for a few days and figured maybe the worst was over. 

I went to work as usual and within the first hour of getting there I got a pain that doubled me over and sent me running to restroom. Since then I've had almost constant pain. Here's the thing, I am on a continual birth control pill which makes it so I do not get a menstrual cycle whatsoever; at least that's whats supposed to be happening. Except now I am having menstrual pain, not just for a few days at a time, but constant. Every day. Now being paired with ovarian cysts and sudden bleeds as well.

Along with all of this crap that has been going on even after surgery I need to start pursuing the other array of symptoms I've had, which is everything from pelvic pain, jaw pain, to numbness and tingling, to insomnia and blurred vision. I am a complete mess.

I've spent too many years accepting what my doctor's have said and not looking into things on my own. I am determined to feel better and I am determined to figure things out. Even if that mean's going to doctor after doctor to find a solution and a diagnosis. I want to thank some wonderful people, you know who you are, from various support groups who have encouraged me to continue pursuing a proper diagnosis. I honestly could not continue on without my support group friends; you have all helped me immensely. 

Thursday, June 18, 2015

A Confession Of Sorts

I really don't like writing blogs that sound depressing and hopeless.. but it's hard not to sound that way when the feeling of depression and hopelessness are all encompassing.

Depression is something that I have fought on and off in my life. It hasn't been a big problem though in the last three years and I thank God for that. Unfortunately, over the last couple months, depression has made it's way back into my head and body and it feels like it is crushing me to my very soul.

depression - intense feelings of sadness and worthlessness – so bad that you have lost interest in life

Worthlessness.... That's what breaks me.

worthlessness - is a state of being unimportant and useless

I would hope that the world would be able to recognize why so many people living with chronic pain/chronic illness struggle with depression (and anxiety). Honestly, a lot of people in the last few months have questioned me about my emotional well-being and I never really felt completely beaten down until recently. Sometimes I'll be having a hot bath to try to relax my body and the pain I've been feeling when I start to cry. I'm not crying because I am in pain. In fact, most times I cry, it's not just about the pain. I cry in frustration and hatred of the body that I live in. There is no escape when you're personal torment is the body you've been given to live your life in. This is what is so hard about chronic illness and depression. There is no escape.

Even as I sit here, typing out my thoughts, my eyes are full of tears. I have cried more in the last three weeks that I have in the last three years. I am hurting not only physically but emotionally. I've lost my desire to look forward to a better life. I've lost hope that I will begin to feel better soon. Just a couple months ago, I remember writing about how ready I was to feel better and to recover. How excited I was for this summer because I would finally be able to get out and do things like a normal person. How happy I was that my pain would no longer confine me to a couch. After surgery, I kept my hopes up and stayed positive. I knew that recovery can be bumpy sometimes. The pain I had to go under for, I was no longer feeling but there were new and different pains. I decided that it was just the pain of something with an easy-fix and the pain of regular recovery. Until the ultrasounds results came back and showed new growths already and cysts lining my left ovary. In a matter of days, I began to experience extreme pelvic, hip, leg and abdominal pain from what we had diagnosed as Endosalpingiosis. Even though every last bit of it had been removed from my organs.

This pain is continuing even now. As this happened, I knew I needed to follow up with my doctor. My doctor (my favourite and most helpful doctor so far, until now) explained that there is nothing else he is able to do for me unless I want to have a hysterectomy at the age of 21. Which for those of you who don't know what a hysterecomty is; it is the removal of a woman's uterus, ovaries, fallopian tubes and sometimes even the cervix which would render her completely infertile.

And even then, the pain may not stop.

I think that rightfully so, I am feeling quite hopeless and heartbroken at the fact that this is the life I am living right now. I am having a very difficult time trying to live with a bit of normalcy. And again, I don't like writing a blog post that feels completely and utterly negative, but this blog is my emotional outlet more than anything and in order to get my emotions out into the world, this is how I need to do it. And this is how I feel. So I'm not going to end this post with some fake positivity and pretty words, I'm going to end it like this.

Saturday, June 6, 2015

Middle Of The Night Thoughts

Something that is likely difficult for people to understand is the tremendous amount of guilt that people with chronic pain have to deal with regularly. Guilt is an awful feeling. It makes you feel like you should be better, you should try harder, you should do more, like you're not enough. Feeling like you are not enough is such a terrible and damaging way to feel. But it is a feeling that is extremely common in my life.

That is not something that I want to admit. Although, it is something that I feel I need to admit in order to deal with my emotions in a healthy way. I do not feel like I am "enough".

Our society puts so much pressure on young adults to know what they want out of life. Kids are expected at the age of 15 to have a clear idea of what they want to pursue in life. And hey, don't get me wrong, I fully support anyone who knows what they want to do from a young age; I think that is an amazing thing to find and stick with your passion. But many people are not lucky enough to experience that. I have never known what I wanted to do as a career or what areas I was skilled in. For years, I let other's tell me that I would just have to settle for being a mom. It became a common joke in my friend-group. This joke of me popping out babies and marrying rich because really, in their eye's, I had no prospects of my own. And I bought it. I began to believe that I had nothing to offer and I would never make anything of myself. I even became content with that perspective; content to the point of laziness because I truly and honestly believed that I would never be able to have a career or make something of myself.

This past year, especially these past few weeks, I have realized how harmful that thinking was to me. How harmful some of my past friendships were for encouraging those thoughts. Over the past year I have started and am almost finished my studies in Small Business Management. I have learned that I have an eye for design, marketing and encouraging others. I have learned that I do have smarts that can be useful in so many situations, and I never knew this about myself before. I was the 'dumb' one, the one that was just 'cute' and the one that was just around. I came to resent myself for being the friend that was just there, but brought nothing to the table. So I decided to stop being that person, because I wasn't embracing my natural skills and abilities and unique qualities that make me who I am.

This past year provided me with a deeper look into myself and what I might want and could have out of life. And for that, I am thankful. 

Unfortunately, like in any story, there are ups and downs. Sometimes they are sky high up's and sometimes they are ocean-deep downs. And the last week has felt ocean-deep. In the course of about two days I went from feeling like I could conquer my disease and kick-ass and be a hard-working, bad-ass, creative business woman to feeling like a worthless piece of crap.

After receiving word about my new diagnosis (endosalpingiosis) I wasn't all that upset. I already knew I had a disease of the gynaecological nature. I knew that the pain wouldn't change, because it was still the same pain I had already experienced. I knew that treatment plans would be similar. And overall, I thought that all I had really found out was that the tissue was made of something else. And that once in a while, cancer can be found. And removed. But, I wasn't upset.

That all changed drastically fast after my last doctor's appointment. My post-surgery pain had continued and wasn't striking me as normal. My ultrasound showed that within the last month I have developed a very large cyst on my left ovary, along with multiple smaller cysts. My doctor explained to me that either the cyst  would cause me more and more pain and burst eventually (maybe soon) or it would cause me more and more pain as it kept growing, and get so big that it would need to be surgically removed (soon). Also, that is was very likely that I would continue producing cysts and growths of the endosalpingiosis type continually for the rest of my life. And even in hearing this my break down was not immediate. It was when I went to explain it all after to my mother when I realized what this all meant.

This meant that going back to work was going to be very hard for me. This meant that if I wanted to look for an extra job or some more work (like I had been planning to do), there would be no point because no one wants to hire an employee that may pass out or have to leave at a moment's notice or have to call in sick for three weeks for an emergency surgery. Which leads to me feeling like a worthless piece of crap.

Honestly, that's about as far as I have gotten. I know that deep down these feelings of guilt mostly stem from the people in my life. And I don't like saying that because I like to think that I am loved and supported. I know that I am loved, but I do not know that I am supported. There are a lot of things that need to be figured out when chronic illness comes into someone's life. It not only affects the one who is suffering, but all those around them. I need to learn how to cope with my disease and learn what I am able to do, and not able to do. And I need to learn how to talk to my loved ones in a healthy manner that shows them that sometimes the things they say to me are very hurtful. And I know that sometimes the way I act and speak to them is also hurtful. I need to learn to live with these limitations in a way that is still fulfilling and happy. And that's where I am at. I am deciding to explore what that means and how to go about living the best life that I can physically and emotionally.

Friday, June 5, 2015

When Recovery Becomes An Up-hill Battle

Normally when I get bad news relating to my health, I handle it pretty well. I nod along, maybe ask a few questions and research the new situation. Today, I didn't handle things as well I normally would.

If you keep up with my blog, you'll know that I had surgery just over a month ago and have been having some pain since then. Last Friday I had an ultrasound to see if there was anything concerning to see around my abdomen. It turns out I have multiple cysts and one very large cyst on my left ovary. Which explains the pain I've been experiencing in the last few weeks. The strange part is that just a month ago, there were no cysts at all on my left ovary and now there are many. Which means they have grown very quickly, and there is a chance that these cysts may not be just cysts, but they could also be relating to Endosalpingiosis. 

So, back to the part where I didn't handle things so well.. I was informed by my doctor that there is a large possibility that I will need to have surgery again very soon if my pain gets worse or doesn't go away. 

That's when I snapped.

Honestly, right away I didn't realize how significant this was until I explained it all to my mom. At that point, I realized that I'm probably going to have surgery again soon. Which means, more time off work and more time in recovery. Hearing this normally wouldn't be too horrible, but as someone who just recovered from surgery after enduring a solid seven months of chronic pain; IT WAS HORRIBLE TO HEAR. Realizing that I may in fact experience more and more pain in the coming days and that it likely won't get better until after another surgery.

I ended up having a huge breakdown which is unusual for me. So I cried a lot and curled myself into a ball around my body pillow and cried some more. I treated myself to a coffee with cinnabon creamer to make myself feelslightly less depressed. And now, I'm here, writing a blog post; trying to get my feelings out of my head and into the atmosphere. 

I had truly and honestly believed and hoped that I would make a quick recovery after surgery and get back to living life the way I used to. That has not been the case and accepting that is going to be a long and frustrating process. And that's about all I have to say on the topic at the moment.