Colored Filters.

I love reading. I have a voracious appetite for literature. Furthermore, as a graduate student I am expected to be constantly reading scholarly journals and my classes each have multiple papers to read on a weekly basis; some of the papers are in print, and some electronic.

The tricky thing is, reading all those small typeface papers on white backgrounds often quickly tires my eyes and gives me a headache, especially if I am reading under the florescent lights at school.

When I was writing my Master’s thesis, I discovered that by changing the background of the document I was able to write for much longer and much easier than I could with a white background. It was a bit of a revelation. Unfortunately changing the background of already created documents can be much more difficult. In order to overcome this challenge and make reading easier I bought some colored filters, specifically a set of ten Irlen filters. These filters have a glare side and a non-glare side, and can be placed over the document (or computer screen) you are reading from. There are 10 different filters, each in a different color that can be used individually or in combination to help the eyes process what is on the page.

So far, the filters that work best for me are blue-gray and gray, and they work best individually. When I am reading on my computer, surprisingly, the glare side works best. In contrast, when I am reading a printed document, the non-glare side easier on my eyes. I am going to keep using these filters while I read, especially for class materials. Hopefully my incidence of headaches and migraines from the light sensitivity and eye strain will go down as a result.

It is pretty cool what just a little bit of color can do for you.

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Self Confidence: Looking Good.

Earlier this week I discussed libido and sexuality with chronic pain; part of the realization I had in writing that post and talking with my partner is that I need to work on being more self confident and happy with myself. If I can accept myself for who I am, the better off I will be.

Self confidence is a huge part of being chronically ill and in chronic pain; these conditions to make you feel limited and unhappy with yourself, and can easily lead to depression. Self-confidence can be critical in battling depression, and today I am going to talk about the self confidence that comes from looking good; when I say looking good I am not talking about fitting to a particular public standard. I am talking about an individual’s personal opinion: what you think makes you look good, what makes you smile and feel comfortable and happy while wearing.

Personally, I usually wear what takes the littlest amount of effort. As my mom puts it I’m a “no-muss, no-fuss kinda gal”. I don’t wear any make-up, and usually just brush out my hair and throw it into a pony-tail. Most of my clothing is school related t-shirts, but I don’t really like wearing them; they don’t make me feel happy or particularly comfortable. What I do like is a classic, somewhat preppy look… but I don’t own much of that. There is a disparity between my wardrobe and what I want to wear/ what would make me feel happy about myself to wear. This week I set about changing that just a bit. I got some new clothes that really made me happy and comfortable; I also got my hair cut. In the mornings still just pull my hair into a pony-tail, and throw on jeans and my Sperry’s, so it isn’t any more effort than it was before, but putting on clothes I feel prettier in, more comfortable in, has really made a big difference. I still need to find comfortable shoes to go with my outfits, but I am more interested in minimizing my pain through functional, easy to wear shoes than having my feet look cute too.

The topic of appearance and self confidence brings me back to Gossip Girl. The show brought lingerie to my attention. I had been aware of the idea of lingerie before, but not really in tune with the potential lingerie had, or how it could make me feel. In the show one of the main characters, Blair, is shown multiple times in absolutely stunning lingerie; she sleeps in silky chemises and lounges around before dressing beautiful robes and on some occasions she slinks out of her designer dresses into alluring slips, or bodysuits, or a camisole paired with the perfect panties. Everything is tasteful and sophisticated, and while skimpy in the regard that it is undergarments nothing is overly revealing. And I loved all of it. I would own every single piece she wore. I once thought underwear didn’t matter, it was just a piece of clothing I would wear (and probably ruin quickly with murderous amounts of blood). I will admit I didn’t buy my first piece of “nice” underwear until last year- some Victoria Secret boyshorts; that alone was revolutionary and I will never go back. It makes you feel better to have underwear on that you actually like, and to wear nice lingerie like Blair did in the show… I can only imagine how much that boost your self confidence. Having something extraordinary under your clothing is two fold: you don’t mind as much if someone accidentally sees it, which takes away a lot of tension in appearance throughout the day, and it makes you smile to know you are wearing it.

When your confidence is already worn down from having physical or mental limitations caused by your illness and pain, the little things like having an appearance that makes you feel beautiful can make a big difference. It also is nice to have something you can control. You may not be able to control you pain or how that pain affects your day, but you can control your appearance and it is nice having that control.

Sexuality, libido… and chronic pain.

Just a little while ago I spent a week watching Gossip Girl seasons 1-5 on Netflix. I know it isn’t particularly good writing or television, but I watched it nonetheless and it has prompted this post.  In the show there are a lot of sexual exploits, moments of passion manufactured for the show to define relationships. But it makes an important point, sexual intimacy is an important part of a relationship, and one that can be particularly challenging to someone in chronic pain and especially to someone with reproductive aliments. This is one of the areas I have the biggest insecurities and emotional baggage, and maybe the thing I have the most difficulty discussing even though it ways heavily on my mind.

Before I became sexually active I had ample libido. I not only had a desire to be physically intimate with my partner, but I often initiated passionate and spontaneous play with him; I flirted and teased. I was the one who initiated each sexual “step-up” in our relationship. But now I am barely a shadow of that person.

Sex hurts.

In the beginning it was something easy to write off- it hurt but we were both so new at this. Most people who talk about sex say the first couple times may be less-pleasurable or even painful, but after that it’s fun and it feels good; it is something people are not only willing to do but fervently seek out.  That isn’t the case for me. The pain persisted; sometimes it was worse than others.

Initially I still had libido so we could still have some passionate and spontaneous intimate moments, but once I started the Yaz that went away. The wonderful and loving man I have a relationship would looked so pained at the thought of causing me pain, that emotionally I had to detach myself to have intercourse- as much as I desired to be participating. I was, and am, happy to engage in sexual endeavors with my partner so long as he is on the receiving end, but that isn’t quite the same, and I know he wants to be giving as well.

After I first stopped taking the Yaz my libido did not return, and now that I am back on Yaz I suspect it wont. I miss the spontaneity and I miss the passion, and I know that the majority of this part of the relationship falls on me, because it’s my ailment that is creating the difficulties, but it is hard to get that spark back in spite of the hormonal regulation I am imposing on my body and in spite of the knowledge that when things progress I’ll be in more pain than I already am.

Now, don’t get me wrong, I have a great relationship. I have a partner who is as understanding as he can be, and who does his very best to make things better for me and to make sure I am comfortable with the decisions I am making. I first wrote this post a few weeks ago, and let it sit as a draft because while writing it I realized that instead of sharing these thoughts with the person who matters most, my partner, I was sharing it with you all- my chronic pain friends and the world-wide internet. The first draft was the catalyst I needed to evaluate my feelings and make a change. I closed my computer, took a norco, and went and had sex- and then, then I poured it all out to my partner. And he listened, and held me, and told me it was all okay and he would do whatever it took to make me feel better. I still have a long way to go to feel comfortable with my new libido and my sexuality (or lack-of). I will likely always have to cope with chronic pain during intercourse and I will have to manage with how that makes me feel, both physically and emotionally. But I’ve made a first step. I’ve realized and acknowledged that I have these feelings and I’ve talked them over with the person that matters the most. It is a challenge, but I am working on it.

Doctors can be frustrating.

This week I had my first visit with my gynecologist since my cyst was diagnosed; we had scheduled the visit two months ago to assess how the mini-pills were working.

Now, I like my gynecologist, she is very nice and she doesn’t  talk down to me, but I often get the feeling that she doesn’t really listen to me, especially regarding my levels of pain. It could be that this is because I’ve only had two meetings with her so we don’t have a longstanding relationship and, for some reason, whenever I go to see her happens to be a good pain day so I don’t look miserable. But that doesn’t really matter to me, she should be listening to my levels of pain, and assisting me in coming up with helpful ways to reduce the pain.

When I told her the emergency room only gave me four Norco pills for my cyst, she was shocked and quickly prescribed me more; however, when I tell her that my hip hurts during menstruation she just suggests I take some NSAIDs. The narcotics relieve my abdominal pain but don’t even touch my hip pain- now how in the world are NSAIDs suppose to help?! I’ve already told her the NSAIDs aren’t effective for the pain, and since they irritate my already very irritable stomach I don’t want to take them. Somehow at my last appointment when I asked her about pain control for an upcoming trip to Disney and Universal, this morphed into I don’t like NSAIDs, that I am against them. (And I got no other suggestions for pain control).

I understand people who don’t live with the pain, don’t understand the pain- but that doesn’t mean I am exaggerating. And even though I have a high pain tolerance and can put on a tough face to get through the day, that doesn’t mean I don’t need pain management. Why can’t doctors take us seriously, and why can’t they be more helpful in the pain management process? It is extremely frustrating to leave a doctors appointment like that.

It was a productive a productive visit in that we scheduled an ultrasound for the following day, and switched me off the mini-pill because it was just making things worse; since I absolutely refuse (my to my doctor’s annoyance) to have the depo shot and since the migraines continued on the mini-pill, I’m back on Yaz on a continuous basis. We’ll see how it goes…

I didn’t get the courage up to ask about surgery, and since she mentioned “the options are progesterone (mini-pill and depo), lupron, and the pill… you’re too young for the lupron so I don’t want to do that to you, and if you won’t do depo and the mini-pill isn’t working, after the pill I don’t know what else to do” I doubt laparoscopy is on her mind…

I did go home and order a TENS unit, which should be here by Tuesday. Even though it wasn’t prescribed (or discussed) I am really hoping it will help, especially with long days of walking around Disney in thirteen days!

My endo journey thus far.

My journey with endometriosis  perhaps began with my conception. Endometriosis has a suspected genetic link, and my family has a history of dysmenorrhea and suspected endometriosis; my mother had a hysterectomy and a confirmed diagnosis of adenomyosis, but they did not go looking for endometriosis lesions or adhesions during the surgery.

…But, even if the lining of my uterus began its wayward development with a genetic predisposition, I’m going to jump ahead in this story to more definable moments.

Every little girl has an odd relationship with menarche. This relationship starts with the first time they are told that once a month, for the majority of their lives, they will bleed; they will have to wear pads or use tampons, and they might have cramps; and at that time, they will be “women.” There is apprehension of this moment.  Girls are both eager for the transition into womanhood and harbor a fear of the whole process. Menarche is almost a competition (of which none of the participants have any control) on who will start first, and who will start last. I remember feelings of inadequacy when my friends all began menses before me; if only someone could have scooped me up back then and promised me not to worry about when menses would begin and convinced  me to enjoy those blissfully pain free years while I could.

For me, from menarche at thirteen and onward, menses has been a dark crimson flood full of clots, and pain, and lasting at least a week. I didn’t know then that what I was experiencing was not normal, since it was always normal for me and normal for my family. However, as the years progressed so did the problems. I never became “regular,” some months I would bleed for 7 days, some months for 14 days or more. If I stood up or moved without going straight to the bathroom I would ruin clothes, and I couldn’t sleep throughout the night without nightmares of waking up in what looked to be a murder scene. I’d get diaper rash from having to wear pads so often. The pain that had once been like a sucker punch to the gut spread to my right hip.

That was the first time I started birth-control, in 2009. My doctor at the time prescribed Yaz, and prescribed me to take it on a continuous three month basis. The Yaz helped to reduce the frequency of menses, but not the pain during menses; in fact the pain progressed to my bowels and shot down my right knee from my tail bone. When I became sexually active, the pain was immense, and regardless of the stage of my menstrual cycle I bled afterwards. In 2011, during a bought of chronic migraines I stopped taking the Yaz. Over the next two years things became even more irregular, and even more painful. The pain that shot down my right knee moved down through my right ankle and the pain in my bowels would reduce me to tears. Worse, I would have flares of fatigue so bad I felt like it was tremendous effort to lay still and flat; like my body was made of lead. I could barely think, let alone think clearly and at the level I needed to complete my Master’s degree.

At least by this time I had discovered menstrual cups and cloth pads; I could finally sleep through the night and manage throughout the day without the constant fear of ruining clothing; I finally didn’t get diaper rash even though I wore pads almost every day. When the symptoms became intolerable, I finally turned to a new doctor; that was four months ago. I had an ultrasound that showed a few small cysts on my left ovary, but there was nothing to be concerned about and no fibroids or masses that could be accounting for the torrential bleeding. Because of my history of migraines my new doctor started me on Norethindrone progesterone only pills. Exactly one month of taking the mini-pills I went to the emergency room with what I feared might be appendicitis. A CT scan showed I had a large cyst on my right ovary; the ovary that had be inactive just a month before. Finally medical professionals recognized the pain was more than just a complaint and prescribed me generic Norco.

It’s been a month since then, and I’ve been bleeding since August 21st; some days it’s light and spotty, some days its 15 ml blood clots. I’ve been in constant pain: pain in my abdomen, pain in my bowels, pain in my right hip, pain in my pelvis, pain shooting down to my right ankle. I have a slight limp when I walk and can barely stand to sit through my classes or at work; at home I recline or lay on the floor to take advantage of the slight relief that offers. My stomach has been unsettled so that I have to force myself to eat and worry constantly about throwing up. The normal mental fog I’ve been dealing with soars to new levels when I cave in and take a Norco… and the Norco only manages to take the edge off the pain in my hip if it is effective at all.

Next week I have a follow up appointment with my GYN, and we are going to schedule another ultrasound. She has mentioned wanting to start me on depo provera shots, but I am not willing to take on the serious potential side-effects. I’m going to ask her about a TENS unit to try to regulate the pain in my hip.  I might even brave up and ask for the laproscopic surgery to confirm the diagnosis and excise lesions found, but I’m apprehensive about that especially since my mother almost bled to death following her hysterectomy.  That event led to the suspicion of Von Willebrand’s disease in my family, but unfortunately Von Willebrand’s disease is notoriously difficult to accurately test for, and false negative test results occur frequently.

That has been my endometriosis journey thus far. There are many more details left to be shared, and many more struggles left to be had but I’m going to take things one day at a time.

This is a start.

Chances are you know a liar; you might even be a liar. People tell lies for numerous reasons, including to get attention,  to avoid consequences, as a means to-an-end, or even to spare someone’s feelings; some people even consider omission of information to be a form of lying.

I lie everyday, and numerous times a day at that.

Socially speaking my lies are inconsequential; they make no difference to those that hear them, and in fact they make our interactions easier.

You see, I have a chronic illness and am in chronic pain. Sometimes it is intermittent and sometimes it is daily for months at a time. Faithfully, everyday society demands: “Hey, how are you?” and everyday I answer in some tune of “fine” or “good” when in truth I feel nothing of the sort. I want to cry, to curl up on my floor and scream in pain. I fight the urge to vomit, force myself to eat morsels of food and guzzle ginger-ale so that I can take my medicine. With every step I take I think I might pass out- either from the world-spinning dizziness, the lightheaded blackouts, or just the overwhelming pain. Sitting isn’t much better. But society doesn’t want to hear that when they ask their simple question. So I lie.

I am the best liar you know.