How To Be The Heroine When You're Also The Big Bad Wolf.

It's midnight, and everyone in the chronic illness/cancer community knows what that means. Pain/nausea-somnia! But since I've enjoyed quite a few medication induced nightmares the last few nights, I'm okay with staying up a little while. Maybe once my meds kick in and I get what's on my mind out, I'll be able to have a nice rest.


 With chronic illness or cancer there's sometimes a deep sense of shame. Or intense guilt. You constantly feel that you're being a burden or that the people in your life desperately want to check out of your "drama". There's the pervasive feeling that you aren't doing enough, aren't good enough, aren't making your life what it should be. This is something that everyone feels, sick or healthy. But when you get sick, your dreams and goals are the same and your relationships and job is the same, but your abilities and feelings aren't. And while logically you know you try your best, you become disappointed in yourself and convinced that others are disappointed in you too. Or worse, burdened by your failures. Every time you have to cancel plans. Every load of laundry you put off because you're nauseated. Every appointment you need someone to take you to. Every accommodation or sacrifice they make for you becomes a reminder that you couldn't do it the way it's meant to be done. And then you read all these positive quotes and stories about people dealing with illness and the goal is to overcome with positivity and inspire others with your journey and all these things about courage and strength. Then you realize that you've cried the last six nights straight and you're feeling all but hopeless, and that's kind of another thing to feel ashamed about. That you're not strong and smiling through it, but instead complaining and letting it overcome you. You become not good at being normal but not good at being sick either. If that makes sense. It all screws with your head a little bit. You start to wonder if you ARE trying hard enough or if you're somehow bringing this on yourself, or ruining your own life. Even though you know logically it isn't true, But you beat yourself up every time you can't do something or snap at someone out of pain, or when you think you talk about your problems too much, or every time you have to have a nap instead of going out. Physical pain and discomfort constantly is awful. But constant self doubt and shame is much harder to overcome. Some illness stories aren't the positive find your light and help others do the same kind. You just strive for it. But for sanity's sake it's more important to be authentic. You have the responsibility to do the best you can and be the best person you can with your illness. But you also have the right to feel how you feel and not have to feel guilt about it. And you deserve people who help and listen because they love you, not because they're doing you a favor.

Man. That's a heavy dish of jellybeans for 1 am. I guess, in summary, I wrote this all out to remind myself that you can only be responsible for what YOU do and feel. Everything else you have to let go of. Because you can't control it any more than you can control your illness or getting cancer. As my favorite quote says, "A tiger doesn't lose sleep over the opinion of sheep". Sometimes even the sheep in her own head.

Goodnight all.

Insomnia Driven Musings

If you ask someone where they'd like to be a year from now, most have all kinds of grand answers. They want to graduate, or get a promotion, or obtain the ever elusive bikini body, or be married, or have a child, or travel some place glorious. They see themselves reaching goals. Moving forward. Building a life. I wasn't any different. I wanted two or three jiu jitsu belts, to be a successful nutritionist, find a nice boy to date, move out. And I had no reason to believe I wouldn't obtain these things because like most people, I assumed I had all the time and opportunities I needed. This month marks a full year since this medical journey began. And what I've learned this past year is that if I'd known or had any inkling of what it would be like, I'd have done a great many things differently. I'd have been pushier that first time I went to the ER and not let them send me home with a few pills so that maybe I could have emerged with my reproductive system and fertility intact. I'd have been a lot less nonchalant laying in the hospital for days sort of enjoying the break and the attention (and the morphine). I'd have been a lot more concerned about that surgery if I'd know what it would do to my nerves and how much damage I'd still have a year later. I'd have stood up to the doctors who thought it was okay to call me out of the blue one day on the phone and say "You have cancer, but we think we got it all. But we'll have to check" and the doctor who told me there was absolutely nothing more she could do for my pelvic pain because she'd already operated and couldn't see anything else to fix. I'd have fought harder when I went to the ER with a cyst bleeding into me and they sent me home, if I'd known the shape my pelvis is in now. I'd have eaten healthier and kept at the rehab workouts I started so that maybe this autoimmune stuff wouldn't have progressed. What I'm saying is that in no form did I conceive that I wouldn't be perfectly mended and back to normal by now. And really, nothing turns out the way anyone pictures it. But I still struggle with this reality. I pictured a healthy, vibrant, healed life.  I guess I thought I could compartmentalize that whole episode and everything would go back to normal. Nothing is normal anymore, but I can say that some good did come of it. I'm a far stronger person now, and looking back on an entire year of pain and sickness and procedure after procedure that I braved shows me that I have the capacity to overcome much more than I'd have given myself credit for. The love and support that I've received from family and friends and coworkers has been amazing and has let me know what great people I have in my life. If I had hopes for this next year, they'd be very similar to the ones I had last year. There are some things I'll plan and strive for but I know that realistically it won't be the year I hope for. Some days that's a bitter, bitter thing. The other days I try to steel myself and remember that where there is life, there's hope. And just because it may not be the year I want doesn't mean it can't be a good one in ways. There are times where I want to throw in the towel. To simply stop working, be on disability, stock up on pills, stay at home, and live the medical life I seem ordained to live. But I don't want that life. I'm not ready to give up on the dream of having a normal life where I get to do everything I dream. I'm not ready to let go of that yet. So while, having learned what I've learned, I will curb my expectations of what the next year brings, I won't give up hoping and fighting.

I may wish things were different. But as Gandalf says, "So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.".

Endoscopy

Something has been bothering me today. It started out as sort of an unconscious niggling or feeling that something wasn't right. But as I tried to go eat some delicious cbs fries, my painful stomach made the problem apparent. It's so odd isn't it, the way something happens and you think you've handled it, only to have it rear it's ugly head sometime after.

I'm talking about the endoscopy and biopsies I had yesterday. And while I was initially very sure it hadn't been a pleasant experience, I assumed I'd put it behind me with gratitude that it was over. But today it made an appearance in the form of mild panic, anger, tears, and an upset stomach. I'll explain. 

When my endoscopy was scheduled, it was with the same doctor who had done my colonoscopy. It was agreed I would have sedation as I have developed a growing phobia of medical procedures. On the days preceding the endoscope I tried not to be worried and comforted myself that I would be out like a light and waking up after with no recollection. I was pretty calm as we waited in the waiting room yesterday for me to be called back. I finally was and the nurse sat me on my bed and began to ask me questions, til we got to the "any allergies?" question. I replied that I have an intolerance to Versed, which is one of their sedation drugs. Thus the nightmare began. The terse reply I got was "well, we're out of anything else so you'll have to do it without sedation." She then left and as a symptom of the panic bursting up inside me, I burst into tears. Tough, right? I continued to cry as nurses came and went, put an iv in my hand, and once offered me Ativan to calm me down. I remember asking what happened after that then, when I got into the room, because I didn't want to do it without sedation. She just smiled and patted my arm and said the doctor really wanted to do this test. I agreed to an Ativan, of which I did not feel a thing probably because I was so upset at this point. Maybe five minutes later a nurse came back and said it was my turn. I was mute and shaking by now as I was wheeled in to the endoscopy room. Inside a nurse was setting out the endoscopy tube, another folded my pillow in half and told me to lay on my side facing her and that everything would be alright. I was still crying as my GI doctor came in, she asked me to stop crying, sighed and said "do you want to do this or not? We can stop" At that moment I felt a little stupid and a little ashamed and afraid of wasting anyone's time or worse, having to do this all again. So I said yes, we could do it. The nurse gave me a small amount of fentanyl to slow my gag reflex and put a plastic bit in my mouth to guide the scope. There was no preamble after that. The nurse had me grip the bed and told me to take deep breaths. The scope, which is about the size of a pinkie finger and cased in hard rubber, was pushed down my throat, through my esophagus,through my stomach and into my duodenum. The whole time I was gagging and vomiting up clear liquid which the nurse kept ordering my to spit out around the scope. Finally it was in place and then biopsies needed to be taken. So tools were swirled down the scope in rapid jump rope like motions, and then pressure when the biopsies were being taken. The scope had to be pulled out part way to get at my stomach and esophagus and the pulling out created whole new rounds of gagging. My doctor kept telling me I was doing so well, better than she expected, but I was fighting to not throw up. Every time I gagged my throat would close, but it would close on this hard rubber scope that was in the way. The scope was withdrawn when she was done and I did throw up then. I was shaking and hyperventilating, the nurse gave me an oral medication to help me calm down as my blood pressure was super high. The nurse asked me "are you glad you did it, was it okay, even though it was uncomfortable?" Which I thought was strange and my doctor asked me about my Halloween plans and told me about what she saw. Then I was wheeled back to my room and told to rest, and I just cried. Awhile later they let me up and let me go home. Now I thought, was this their fault? Was this my fault for not speaking up and saying I didn't want it if I didn't have the sedation? It's probably both. They were trying to be kind, and just trying to get it done, but it wasn't what I signed up for. And sure, people elect to have this procedure done without sedation, but that is their CHOICE. And I was left all the more feeling cheated because though I maybe had a choice, there was pressure not to exercise it, to just brave up and do it. The never ending parade of medical procedures, almost one a month now, already has me raw and off put. I didn't need a new reason to fear them, but now I have one. And I can't help feeling that for most doctors, after so much time and effort on their parts, I'm just a numbered patient that they're on a mission to cure. Instead of a girl who's afraid and didn't ask for this and doesn't want to do this. Yes, hospitals are understaffed and on a time crunch and doctors have more pressure than ever to treat more patients. But I don't deserve to be treated harshly and then sent off until the next round. Friends tell me what I'm feeling about it is normal and it's okay, and anyone would feel violated or mislead or upset. But it's not okay, because I'm not even close to done having to submit myself to tests and procedures and nurses and doctors. And I can't help being afraid of coming out with more than just physical marks to show for it. But you just keep on being strong, because there isn't any other option. You keep on saying yes because there's no giving up. 

Getting some things off my chest.

I can't remember a time where I have been more frustrated than I am right now. And while I've been trying to hold it in and be positive, some days it's a losing battle. Last Monday, I had my second surgery in a year. An exploratory laparoscopy to see if the source of my pain could be found. Needless to say, I was apprehensive. About the pain, the process, the recovery, the very real possibility that nothing would be found and that I was doing it for nothing. But I recognized that I couldn't just do nothing, so I sucked it up and stumbled through the best I could. Imagine my frustration then at waking up after to hear "Well, you have a very angry and inflamed uterus and ligaments. But we don't know why, and we did nothing about it". At MY request, I was given two weeks of antibiotic in case it was some kind of infection or chronic PID. And then I was sent home with a follow up appointment in 6 weeks while she conferred with my other pelvic doctor in the meantime. In a way, I did do it for nothing. I know that I actually didn't, as it doesn't show up on imaging tests and now I can prove to people that I'm not crazy and there is something wrong. But it sure feels like this was more trouble than it was solution. And are the antibiotics working? Of course not. It's been a week of two, and maybe I'm just not giving it enough time. But I've been on antibiotics in the course of this year and it's never gone away. When I first started having this pain a year ago, and presumably whatever infection or event that caused the decimation of my fallopian tube, my tube probably looked like this. Inflamed and angry, and then too damaged to save. So is that what we're waiting for to do anything about it? For my uterus/ligament things to get so damaged that they just have to take them out? I'm supposed to give it more time, more time to heal or fix itself. But it's had a year and hasn't done it yet. And there's no reason, no cause, and therefore no assurance that it ever will. I have ovarian enlargement that probably means polycystic. But they aren't all that concerned about that either.

The last month or two, my digestive symptoms have gotten vastly worse, and new ones added in. I've had the nausea, vomiting, and fatigue the entire year I've had the other problems. But now it's so hard to eat that I just don't anymore. Either because my stomach cramps so badly that I have to stop, or my stomach distends so much that I get short of breath, or I'm full after 3 bites. I'm plagued by nausea 24/7, intermittent vomiting, unexplained rashes(I've had those the full year also though), swelling of my hands and feet, chills and sweating, and a host of other intermittent things. I've lost 11 pounds in the last month without trying, I've tried every drugstore remedy, tecta, proton pump inhibitors, eliminating the "trigger" foods like soy and dairy and gluten. I'm on constant prochlorazine or maxeron for nausea, now buscopan before every meal to keep my stomach from cramping, antibiotics, opiods for pain, codeine for pain, medication to help me sleep, low grade antidepressants that block nerve pain signals, birth control pills to keep ovarian cysts from growing, and all of the OTC meds that give me some relief.



I'm 24 years old, and I'm expected to just take this all and deal with it. Expected to alter my life so that it fits what I'm able to do with all these things happening in it. To accept "I don't knows". I'm expected to have a procedure almost monthly, surgeries, colonoscopies, endoscopies, MRI, CT, labwork, breath tests. To see specialist after specialist who give me no solutions. I see the gastroenterologists next month and if they fail to find a solution, I see immunologists and so on and so forth. And I still get to see the Tom Baker in 9 months to make sure no cancer has grown. I've spent a year of my life like this. With no end in sight. I know that I'm supposed to think positive and do the best I can. But I also know that I can't have a career if I have to keep missing work. I can't focus on school if I'm focused on symptom management. I can't train as an athlete if I can't eat. I can't compete if I'm on all these medications. I can't be that fun person that my friends want me to be. And I can't focus on healing if I don't know what the problem is. All I'm able to do now is manage. Manage life, manage symptoms, manage energy. I'm 24 years old. My life should be in its prime. Exciting, driving, building. It's unbearably frustrating to see that totally slipping away some days. And I realize, for all I complained about it, I was so incredibly fortunate to have the life I had before. I'd give much to have it back.

Darkest before the dawn.

I have taken a break from posting for awhile, mostly because I felt that I wasn't able to express myself truthfully because I'm so ashamed of it, and because I'm so frustrated with people around me(some of them) that I feel I don't want to explain myself to them anyways.

As an update, my cancer tests all came back negative which is amazing. They showed a few other things, polycystic ovaries, beginnings of liver disease from the heavy medication use, etc. I also have been to see the chronic pelvic pain doctor who confirms I have it. As some measure of controlling the pain, I see him every week for lidocaine injections to the pelvis and back. He also put me on continuous birth control to stop menstruation, and an antidepressant called Elavil which has been shown to help with the transmission of nerve pain. I still have percocets and toradol, as well as lidocaine cream.

There's no other way to say it, but that I'm worn down. I'm mentally and physically and emotionally exhausted. I'm in constant pain, a constant state of nausea and exhaustion from taking three different kinds of medications that are all sedatives and all in high doses. It's extremely hard to work a full time job when you're struggling to stay awake or not throw up or working through pain. I have no social life to speak of, less and less people that I trust or that have stuck around, and an increasing frustration trying to make it understood that I'm doing the best I can without seeming pathetic or like I'm making excuses. I'm exhausted of being afraid of injections and surgeries. Tired of being angry at people and struggling to forgive them, and chasing after them trying to make one sided relationships work. I don't know how to cope properly anymore and I can feel it building into something not pretty. On my darkest days, sometimes I question why I even got a second chance, because what kind of second chance is living like this?  Sometimes, I even wish that I hadn't gotten one and that the cancer or the infection had just killed me. I know that's deeply ungrateful and I'm more ashamed than I can say. But despite how hard I try and how hard I try to be brave and act like it's no big deal, my quality of life compared to what I had before is depressing. There's no other word for it. I'm committed to digging myself out of it, whether that means higher antidepressant doses or seeing someone about it, but I needed to express it so that the people around me understand that I'm not doing okay about this anymore. I'm tired, in pain, sick, and I just don't know what to do anymore.

I'm sorry, so sorry, for the pity party, and I'll try to resolve to be more positive. As always, thank you for reading and sticking by me and understanding.

Monster meds or monster me?

I'm so angry. Angrier than I've been in a long time. Angry and sad. Normally, I think I deal with things pretty well. I make jokes, I laugh, I poke sarcastic fun at my situation. But I'm tired of laughing about it, and I'm really just tired of the whole thing.

Why am I angry? I'm angry at what my life has become. I was an athlete. A flirt. Strong. Lazily wandering through life thinking I had so much more of it to go. I want that life back. I want a life where I'm not in pain all the time, or being sick. I want to be able to exercise, do MMA, win belts and fights. I want a life where I'm not on medications that I have to worry what they'll do to me or that I have to keep myself from being addicted to. I want my clothes to fit, to not be asked if I'm pregnant or when I'm due from swelling. I'm angry at all the physical changes, that they're pointed out when I already see them, that I feel completely unattractive and undesirable and then have to take a pill that cause weight gain, acne, hair loss, and depression. I want the life I had back, where I felt beautiful and didn't have a self conscious bone in me.

 I want friends who didn't abandon me because they weren't able to cope. I had to go through all of this and learn to cope with living with it. The least you could have done was be there. I'm angry that I know what it feels like to go to a movie and not be able to have popcorn because I have to have a colonoscopy. I'm angry that I've been poked and prodded and cut open. I'm angry that I'm 23 years old and I got cancer. I'm angry that I have no control and that I'm afraid all of the time. I'm so so angry that I've been as good a person as I could have been and this is happening to me. That I know some amazing people who have to suffer through cancer and illness. I'm angry that bad things happen to good people.

I want to not have to worry about my job and losing it because I have to go to appointments or go home sick. I want to not feel guilty that the people who love me have to worry and deal with me like this. I'm angry that I may have to deal with these issues for the rest of my life. I'm angry at everything that's happened, and everything that's going to happen, because I know I'm not nearly done having them happen yet. I'm angry that I'm worried about moving out because of this because I'm scared how I'd do on my own after surgery or because of medical bills. I'm angry that if I ever wanted a child, I'd have a 25% chance of being able to do it by myself without doctors intervening. I'm angry that I'd have to worry about a man leaving or not being willing to be with me for that. Or for how I look after having been sick.

I don't know what to do with myself anymore. I know that maybe it would help if I talked to someone about it, but I know that people are slowly running out of things to say. Maybe I need to talk to a professional, I don't know. It may be something I just need to learn to get myself through. I just know that right now, it's too much. Sometimes all you can do is cry it out and then wake up tomorrow and try to do better.

Visanne- The miracle drug?

When I went to see the new gyno specialist, she prescribed me something called Visanne. Visanne is a drug that has been used for awhile in Europe to treat stubborn cases of endometriosis. It only became FDA approved and legal in Canada in January of this year. If you're wondering why I've been given an endo drug, good call. It's not really known if I have endo, none was seen in my previous surgery, but lesions can be tiny or difficult to see with the infection I had. So it's possible, most likely not probable. But it's also been shown to help with chronic pelvic pain, which I do have, and chocolate/hemorrhagic cysts, which I have as well. It apparently does amazing things for symptoms and pain. But being that it's similar to a progesterone only birth control pill, it has plenty of side effects, which I was super anxious about. It deeply concerned me that I could be trading one poor quality of life for another kind. The common side effects for Visanne are depression, migraines, stomach pain, vomiting, nausea, hair loss, acne, weight gain, increase in other kinds of cyst growth, skin problems, and month long periods. Less common but severe side effects include liver damage or malignant liver tumors, blood clots, heart problems, and reproductive cancers. In prescribing this to me, the doctor has of course determined that the benefits outweigh the risks, but it's still scary to contemplate. Especially with it being a new drug here, and one that hasn't been extensively researched in Europe. It's really maddening and stressful to not know what it's going to do to you.

Yesterday was my first day taking it. I took it in the evening hoping to sleep off the worst of it, and I felt fine before going to bed.This morning was a different story. I woke up throwing up, with searing pain in my stomach and in my pelvis, approximately where the cysts are. I have a bit of a headache, cramping like bad food poisoning, and intense fatigue. I'm hoping it's just a system shock and will go away quickly, but hey. Welcome to pharmaceuticals. I'll keep updating on the progression of symptoms and results.

Ciao mi amors.