Kristal

This site is about my experience with cervical dysplasia, as well as anything else I might feel like discussing!


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My Mental illness: for Bell Let’s Talk day!

If you are in Canada then you know today is “Bell Let’s Talk day”, and it’s an important day to many of us.  I try to stay away from just tweeting  justnonsense, as I do want people to learn and accept mental illness as something that isn’t to be feared.

I have a mental illness, and I’ve come to accept it and work daily to keep myself from getting worse.  I have a severe anxiety disorder, which has developed from the numerous medical issues I have had in my life, and years of abuse, so I try to gain that loss of control back, which generally just causes me to feel more anxious. Most people tell me that they find this surprising, as seem to be a very calm person, so obviously I am good at hiding it. We all feel anxiety, but when you allow your fears and emotions to control your every decision, and panic over the smallest things, constantly focus on small details about the future, or obsess about it, then like me you may have a problem.  I get anxious when I have too much to do in a week, too little to do, whether I should go out for dinner, or eat at home, and worst, that I am having too much fun or too little fun in a week.  Some of you may be thinking that my anxiety is something I should control, get over, because we all have it, and that’s true we do, but not everyone lives with stress constantly.  I’ve only ever been able to reduce it, never lose the constant feelings of anxiety or stress.  I don’t know why I am this way, and sometimes I don’t care.  I work to keep it in check, and that is a victory to me, keeping it in check, then I am not constantly running back to check that I turned off the stove, closed my door, and not missing the bus because of these actions (this almost happened this morning).

I’m also dealing with a condition known as “cancer rage”, which may sound odd as I never made it to a stage of cancer, only precancerous changes, but it more comes from all the tests I’ve had to go through, not knowing what the tests would say, and just the fear and anxiety that a biopsy can cause.   The ladies at the support group totally get feeling like this, and have let me know it’s totally normal for anyone with dysplasia or full blown cancer to feel.  I’m writing about it now because I am going through it as this very moment, one person disrespects me, no one seems to care, and then boom! for the rest of  the day if anyone looks at me funny, or talks to me rudely, it builds exponentially, and I feel I will explode in some fashion.  I hate feeling like this, and how upset I get, but I am told only time will help with the rages.  I’ve even gotten so upset by people breathing near me, or not leaving on time for something,and I know it’s unrealistic and damaging to me, but I can’t help but obsess about these situations.

One day I’ll speak more about my bouts with major depression, as they are stories within themselves.

Let’s start being more accepting of differences we can’t see, and more helpful to people who could use a kind word.  And realistically, you won’t have a clue what the person might be going through unless you suffer from it too (and even then you don’t understand what it is like for that person, just for yourself). Don’t be afraid to be who you are, whatever that means personality wise, mentality wise, and in how you look.  Be more inclusive, not exclusive!

http://letstalk.bell.ca/en/end-the-stigma/tweets/


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The conversation

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Tonight was another rehearsal for the Vagina Monologues.  As usual, I was there early, and had grabbed a quick meal, so when I saw one of my cast mates sitting in a corner I thought I would sit nearby.  We started talking, as she was a bit nervous about her part.  She was in the play to do something that made her anxious, and challenged her (Good for her!).  We talked about Eve Ensler, our jobs, but then she asked me why I joined the play and I stopped.  Usually, this is the point when I make people feel uncomfortable, not because I am being offensive, but because they find what I am talking about offensive.  Whether it’s being uncomfortable with “girly-bits” like our vaginas, normal human sexuality, or even the big C word,  I’ll never know, but all I know is people hate talking about anything that goes on below the belt.  It was refreshing to discuss my story and say words like cervix, biopsy, and not have this stranger flinch.  She doesn’t know me, why does she have to listen to me give the real reason I was in the play?  I could lie and say that the reason was that I loved Eve’s work., so why didn’t I? It’s quite simple, because my reason is something I can’t hide from, and it’s not offensive.  It’s ok to tell people that I went through something really traumatic, something that really challenged my notions of femininity and sexuality, and for it to lead to further conversations.  We began to talk about pregnancy, as she was currently pregnant, and what might happen if I were to become pregnant with missing a large part of my cervix.  I know that part of her ability to listen relates to the fact that she is in a play about vaginas, but wouldn’t it be great if we were all like that, really wanting to know how people are doing.  How many times have we all gone through the same conversation:

Hey!  How are you doing, it’s been awhile?

Oh, I’m fine, you? (although I really need to talk to someone as I feel my emotions are going to drown me)

I’m fine too! (I could really talk to someone too, but if I admit to what I am feeling people will judge me, and I don’t think I can deal with that right now)

Why can’t we be open and honest with each other?  Now maybe we don’t have the time, or we are feeling a little too low to really listen to someone, and that’s okay too, just say so!  Who knows where our honesty might lead us?  The friends we might make?  Or even the people we might help?  Currently, I am on a mission to get people talking about cervical issues, to go for their paps, not be embarrassed about sexual issues, and soon to raise much needed funds for below the belt cancer research (more on that later!).  

I really appreciated that tonight I could be honest and not feel judged.  And tonight, I am going to post this entry without editing, and see what reaction I get.  There may be spelling mistakes, there may be grammar mistakes, but I am curious about what people like more from me, and if they enjoy my honesty.


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Confusion

I apologize for being a bit silent recently, just had a lot on my mind since my doctor’s appointment last Wednesday.  I’ve been left with a lot of confusion, as it seems my medical team doesn’t really know what to do or think.  I wonder if a lot of women in my situation feel the same way?  That no matter how helpful and proactive the doctors are, that really they are just being reactive, and have no idea how best to treat women with cervical dysplasia or cancer.  It seems that we have all this knowledge from pap smears and HPV tests, but that they aren’t always sure what to do with it, or why some cases improve, while others worsen, and no one seems to really be pursuing this area of research.  Oddly enough,  I have been given the option (in the future) that if I feel I can’t handle this situation, the future appointments and invasive tests, that I would be allowed to pursue a partial/total hysterectomy…..and that seems worrisome too…that I can choose such a radical option (unless it is chosen for me earlier).  I still don’t know if I want kids, and my doctor wants me to wait as I am young to make such radical decisions. I’ll speak more on this soon, but I didn’t want people to think I had stopped blogging 🙂  

Thanks for listening, and remember ladies, book that pap!


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Cervical Cancer Support Group

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In the past week I have really stopped feeling so alone with my cervical issues.  I’ve met a few great ladies who are blogging about HPV, cervical dysplasia, and/or cancer, but I have also attended a cervical cancer support group.  It was amazing from the moment I stepped in the door at Wellspring, everyone was very kind and helpful.  As I was early, I sat in the kitchen waiting for the group, and the facilitator found me and we had a quick private chat.  It was nice to have a little one on one time, since I was new. I did feel weird about going to a cancer support group, as I wasn’t diagnosed with cancer (as many have reminded me), but as she and the rest of the group said,  “You went through everything we did, the same tests, the same fears, and the same emotions, the only difference is you caught yours early enough that hopefully it won’t progress!”.   The next hour and a half really calmed down my anxieties, and made me feel more normal, and supported.  All the ladies had similar situations and talked about how their emotions were all over the place, happy one minute, sad the next, and angry all the time.  Or how you are made to feel shameful by society, like you caused or asked for this situation to happen to you, like you didn’t eat healthy enough,or you had one too many partners .  Hearing their stories, it did mirror a lot of what I have gone through, and while some of it made me worry (what if I do develop cervical cancer, and have to have chemo/radiation), but then I thought, I will at least know where to turn, and find support to make it through these things.  It’s not that my friends haven’t been there for me, or don’t try to understand, but I am quickly realizing there is no way for them to understand what I went through last year, and will go through the next year. It’s a weirdly unique to you and yet similar experience for all the women who go through the stages of cervical dysplasia/cancer.  Everyone had a chance to talk, and tell their story, or concerns to the group, and we all felt better when we left.  I also wasn’t the only one with dysplasia who was at the session, as there are no support groups that target us separately from cancer….but really why should we be separate? I’m not sure I will ever find a place I felt more accepted, and cared for than in that room.  If anyone is in Calgary and would like cancer support, check out Wellspring, they have so many support groups, and social workers, I can’t even begin to name them all, but they really help you to feel less overwhelmed.

As well, if you haven’t already, or it’s been a few years, book your pap!  Don’t wait for something bad, or don’t hide because you are afraid your doctor will be mad, or you don’t want to know if that weird symptom you are having means something far worse. Believe me, ignoring the symptoms is far worse.


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Thanks, but I don’t need you to speak for me?

It was a bit of a twitter flurry the other day, as it seems Autism “spokesperson” Jenny McCarthy was outted as a “fraud”.  It seems her son never had Autism, and previously, she had been very vocal about vaccines causing his Autism.  I’m not here to talk about the validity of those claims, or argue whether she was right or wrong, as what I do want to discuss involves having someone care enough to speak out in regards to diseases/disorders.  As most people with cervical cancer, and cervical dysplasia know, people don’t speak out enough about these health concerns, as our society feels they are inappropriate topics to discuss.  Really, people just need time to become comfortable with things I guess, think about breast cancer, it wasn’t that long ago that people felt uncomfortable about discussing this subject.  Now, we view supporting women who’ve suffered breast cancer as noble, kind, and just something we all should normally do.

It’s not that way though for those women who suffer cervical issues, anal cancer, or even for men with prostate cancer.  Our society has so many issues with sexuality, that I think they can’t yet handle talking about cancer that affects the genital region.  And celebrities are very open when they suffer from breast cancer, we see them on posters all the time, at run for the cure, and speaking out in interviews, etc.  I don’t notice the same level when it comes to cervical issues, and really I could only find a small handful of celebrities who’ve admitted they have/had cervical cancer.  Most celebrities or public figures seem to hide their struggle, or feel embarrassed about discussing them.  I read about Judy Blume hiding that 17 years ago she had a hysterectomy due to cervical cancer, and it isn’t that she had  to share such private information, but the news was quietly announced recently when she admitted she has breast cancer.  We shouldn’t have to hide our feelings, fears, and emotions, or worse yet, not even be told you have cervical cancer, which was often the standard practice 50 years ago.

I’m not trying to say that people must speak out, that they must allow for an invasion of privacy, but what I am saying is it can shed attention onto something that people want to avoid talking about seriously.  It seems when celebrities talk about sensitive issues, that the general public becomes more comfortable, and from that more people seek testing or treatment, and I would love to see that happen for cervical dysplasia and cervical cancer.  I would love to see celebrities talk about how a routine pap caught minor abnormal changes, urge all women to get a pap smear, and show the world you don’t have to be ashamed.  You could see how horrified most people were about Farrah Fawcett dying of anal cancer, and I honestly wonder how much of it was from the simple fact such a beautiful women died of something so “embarrassing”.  It’s not embarrassing, it happens, and we should all seek regular testing, and not avoid uncomfortable things like pap smears.

Celebrities can do a lot of damage, and I won’t say whether Jenny McCarthy is a good or bad in her role as a spokesperson, but at least she brought attention to something that did need to be discussed.  Same with Michael J. Fox with Parkinson’s, or Ronald Reagan with dementia, or the growing group of celebrities discussing their mental health issues in general.  And really, we shouldn’t blindly listen to a celebrity, we should do our own research into all sides of an issue to come out with a balanced opinion. When we speak up things change (albeit slowly), we feel less alone, and less shame, our society feels too much damn shame about natural things (and the resulting societal problems related to sexuality).  So let’s discuss the sensitive issues, listen to our friends and family when they suffer, and not be afraid to be real!

http://www.huffingtonpost.com/2013/01/04/cervical-cancer-awareness-month-celebrities_n_2404668.html#slide=1942856


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Tomorrow is a good time to call your doctor…

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January is cervical awareness month, and how many of you are actually aware of your cervix?  How many actually book pap screen appointments when they should?  Even after all I have gone through recently, I am glad I get checked on a regular basis, as in Sept 2013 I was about 6 months away from an official cancer diagnosis.

Be brave and call your doctor tomorrow to book your appointment.  Or ask the wonderful women in your life when they last made an appointment.  And remember (for my American friends) there are ways to get a pap done for little to no cost.

https://www.facebook.com/CervicalCancerAwareness.CCA