the philosophactivist

Sunday, November 20, 2011

Prednisone (a corticosteroid) and Dating

Prednisone and Dating

It took me a month or two to start the corticosteroid prescribed to me by my hard-of-hearing rheumatologist. I was terrified of the physiological changes that would happen but even more terrified at the sound of urgency in everyone's voice when I told them that I had not started the drug yet. Though everyone acted like it was no big was a huge deal. My “condition” was worsening. I could barely walk. Sometimes I couldn't put on my shirt or tie my shoes. I ached all over and seriously wanted it all to end. Wished it would end. The pain was so unbearable and indescribable. It defied all language. So...I began the medication at what I was told was not a high dosage. It changed my behavior almost immediately. Some nights I'd feel like I was on speed and I'd dance at midnight for an hour or so non-stop. Sometimes I'd have splitting headaches or my throat would hurt. Sometimes my stomach hurt. I got these raw spots on my tongue. I cried for no apparent reason.

And then I met someone.

Ahhhh! I thought...maybe I shouldn't date anyone right now. I don't know what other side effects there will be. But she was awesome and there we were. I tried to be as honest as possible about the new medication and the way it made me a little weepy. My pain was still around and she ended up steping into the role of caregiver quickly- soaking my feet when I couldn't walk (about 3 weeks into our relationship). Immediately I felt ashamed. She took care of someone else all week long and now here she was caring for me. I have always been so independent. I really, really tried not to get help from anyone after I became sick and to my own detriment a lot of the time. My mentor once told me to stop being so butch. Ha! If she only knew that I was just being a boi. But women do it, too. I feel as if all genders go around not divulging how much pain their in, emotionally, physically, etc.  Especially if they are people of color.

So we continued dating. I was finishing up grad school and was super stressed and still hurting. I couldn't be all that I wished I could for her. I was pulled in so many directions. Sometimes I was irritated. Sad. My parents were in complete denial, only a few family members knew and I felt alone. There were so many ups and downs. I had spent a whole winter with this pain...and was now trying to figure out how to manage it and how to heal and- how not to let it affect love with all of this going on in the background. But with her I felt euphoria. We went to performances, walked around town, watched documentaries and spent whatever time we could with each other. Usually weekends. I can't even explain to you how awesome this woman is. A family-oriented, organizer of so many different causes. When I went into these schpiels about race in academia and in my community, she totally got me and I was in awe.

I thought I was doing a great job juggling my illness, school, and romance through the Spring. The meds made me feel ok and I'd gotten a great homeopath whose remedies were helping me work through all this emotional stuff. I also got a wonderful herbalist whose herbs also helped me physiologically. But- she also told me that my diet was horrible. I was eating good foods- just not for me. Ugh. So I tried to switch my diet, I was stressing out with school...these new meds...but our attraction and interest was still going strong.

Then came the summer. I had a huge transition from east coast to west coast and the meds had started to make me feel irritable and like....stone. It took me weeks to notice this. My emotions...what had happened to them? I was so emotionless. I did not feel like myself at all.  On top of all this I went down on the dosage with a new doctor and began a new anti-malarial drug. I'm fairly certain these drugs brought back my blood disorder and really messed with my level of iron. So I was fatigued a pain if I biked too much or walked too much. I felt like such a sucky boifriend. I don't think she'd ever dated anyone with limited this was all new for both of us. I felt it really hard to keep up with her, and at first, she rarely tried to slow down. I began just declining going out with her. Especially if it was an event in the night time where we'd stay out all night. If I don't sleep I can barely move in the morning...Also she never knew that smoke exacerbated the achiness in my joints and I think that my disorder caused me to be overly sensitive to it. It took me a while to figure that out, too.

She became frustrated. I became frustrated. Stupid drug that took away my emotions or made me overly emotional. After a month or 2 I felt like I was inhabiting my body again. More like myself. Less distant. I'm going to say it was the decrease in dosage. Around the fall I started to notice which foods would make my joints hurt more...but I must have also become low in some other mineral or metal because I would crave powdered donuts or kettle corn...what a summer. I suspect that if I'd learned to control my diet more and if I'd kept a better eye out for my emotional shifts that the summer would have gone slightly easier. As I've thought of my diet more and more I've thought about how eating the foods that I wanted to eat was the only control I really had over the summer and fall. Everything felt so up in the air but if I just had a snack or meal that I liked, at least I had that. I guess that might be the main mechanism for eating disorders if you think about it. Not that I think I had one-- I just know that with my life swirling all around me, food choice was something I could most of the time control. Well, until I started running out of money.

But she stuck around through my aches and mood swings. I can't wait until I'm off of this altogether. It's really changed my mind about taking testosterone. I'd known that irritability was a side effect but actually experiencing it- whoa. I miss my raspy, baritone voice though  since I've decreased in dosage :(. But, I suppose that's neither here nor there.

The reason I'm telling this tale is because I want folks to be more aware of what prescription drugs can do to you. I know physician's always say “Possible” side effects but keep an eye out for emotional changes. Listen to your loved ones. I know that there were support groups that probably could have forewarned me and told me of techniques they used. But- I thought I was fine and never called them up.  As an independent person, I pride myself on not requiring much assistance. This autoimmune disorder changed everything. I had this wonderful partner who was trying to understand and trying to help me once she understood more- but every time she helped me I felt more and more ashamed. Sometimes I'd relax but then I'd be reminded of what she'd done- and I'd be depressed again. Because I'm the masculine one...right? What am I doing not being able to support myself? Manage my pain? Manage my emotions? And I felt so bad that I was a burden. I felt like at some point she resented my illness; being with this ill person. I felt like she saw my illness as a weakness...that it lended to her believing that I was weak. I became more indecisive because I was indebted and also because I'm fairly easy - when it comes to restaurants and outings.  She'd dealt so much with my irritableness, I tried extra hard to dial it back. But- then she started blowing up at me. And I started reacting to her reacting to me...and emotional meltdown after meltdown. Was there some queer counselor, yoga or meditation instructor that could have helped us from triggering each other?

I'm usually a level-headed person. I've practiced buddhism for years and years. But it felt like meditation was no match for this damn drug. Sometimes I was so complacent. I became less into my practice as I spiraled into this out-of-body experience with prednisone as the driver. Granted, it's important that I mention other factors were involved.  But the prednisone set the dynamic. And I am going to do everything within my power to heal myslf and get it out of my system. The anti-malarial drug as well. Because I care about my partners and loved ones and I would have never been so incompassionate if I'd never taken this stupid anti-inflammatory that suppresses my immune system (and emotions as well). Sigh.

One of the best things I heard while trying to cope with this drug: Remember, these emotions are manufactured.

I know partner knew this...but what then? How do you deal with the aftermath or the continuation of being on such a disrupting drug?

Here are my thoughts: 1.keep open communication with your partner, ask for honesty and listen. 2.Try to eat as healthy as possible and figure out the allergens that might cause inflammation as well as depression or irritability. 3. Find coping strategies for when you have spells of irritability or rage whether it is going out, meditating or chanting, or doing breathing exercises and remembering that these emotions are not really coming from you. It helped me a lot when I would get angry to ask I really angry? Why am I angry? Is this really coming from me? Is there a reason for me to feel this way? Did what just happened warrant this much of a response? And when I'd get upset at myself for being angry I'd remember how important it was to be compassionate to myself. At first it was really hard to keep from being depressed or angry at my reactions, but once I learned to manage my emotions a little more it was easier to step back and be compassionate to myself. Honestly, if you can't be compassionate to yourself, you can't be compassionate to your partner. No matter how loving you think you are- if you are hard on yourself, odds are that you are the same way to your partner.

It's also extremely important to remember that autoimmune disorders didn't happen overnight. Depending on your understanding of the etiology or cause of could believe it started as a child with exposure to toxins or maybe that it's something you inherited or you could believe that it is karma over a milennia. Whatever your understanding, it's important that you know that these disorders are deeply rooted and that the odds are that there is going to be a long road to recovery full of ups and downs as you learn to manage your lifestyle. It is imperative that you be with someone who understands this. I can't stress this enough. If you are with someone who does not understand the extent of this disease and what you are going through, it is going to make your recovery that much harder. I also recommend that your partner finds a support group for loved ones of people with autoimmune disorders and reads some literature and maybe even blogs on similar experiences and that you really sit down and check in with each other on how you are feeling and how you can support each other. It can be difficult, you definitely shouldn't minimize that - but it's not impossible. Those of you suffering with chronic pain and illness remember that if your partner gets upset or stressed out or feels like they can't deal with it, that it doesn't mean they love you any less. Think about it. If it's difficult for you to manage, how must it be for them? Even when we don't think that we ask a lot of our partners, it still can be overwhelming for them. Understanding is key. I can't stress enough how we need to be compassionate to one another in order to get through this together. And if your relationship must end because it is too difficult, don't beat yourself up or stress out about it. I know that it is more easier said than done but we really need to use that time to focus on what we need to do for us to feel better and manage our health and hopefully we can keep that loved one as a friend if not a romantic partner. If they stuck with us that long through all of the ups and downs, they really do care.

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