Medicine is constantly-changing landscape, and I was lucky that when I was born ten weeks premature in 1991, I had a lot of medical advances on my side–even better is that many premies now have much better outcomes. This is relevant because I have been a) very invested in the medical system since I was born, and b) have several lingering effects from prematurity. Of course, not all of these effects are chronic disease, nor are any later-onset chronic conditions definitively linked to prematurity: not only is there a lot that I don’t know yet… research is barely scratching the surface, too.
I was diagnosed with asthma in 2008, a month before I turned 17. I currently follow up every 6 months with an asthma specialist, and am relatively stable at present. I likely fall into some subset of the moderate persistent category based on medication use, however, while I experience significant reactivity and reversibility indicative of asthma, my baseline pulmonary function tests are most often normal aside from my small airways [FEF 25-75%]. After a long journey of different medications and adjustments, I presently am controlled in a way that is satisfactory to my respirologist on Zenhale, Qvar, Atrovent and Ventolin as-needed. I haven’t needed prednisone since September 2012, and though I have a nebulizer, I use it infrequently. It’s also inconclusive how much my asthma is relevant to my prematurity, considering I did have lung problems following birth (like most premies), or just some random thing that happened.
More than anything else though, asthma has been the facilitator in meeting many, many amazing people, and at this point, I can’t imagine my life without a lot of them–these people have helped to shape my attitudes and perceptions about living with chronic disease . . . and to refuse to be defined by my disease(s) . . . turning the hated phrase “asthmatic”, into badassmatic–being better defined by badassery than asthma through positive choices. And that perspective has shaped many, many more parts of me than just my asthma!
Part of the package-deal with asthma, I have allergic rhinitis. My only overtly positive allergy test is to dust/dust mites. I’m awesome at denying it and ignoring my sinus treatments (…I am not into snorting ocean daily, okay? And I already inhale enough steroids, I am reluctant to snort them as often as I am told I should. And yes, ALL of my doctors are totally aware of my non-compliance. If I’m not going to be compliant I’ll at least be transparent about it.)
Retinopathy of Prematurity
Being premature, be it the oxygen therapy or the actual prematurity bit, is a really good way to screw up your eyes. I have correctable vision in my right eye only, and very little vision in my left eye [lights and shadows]. I’m followed yearly, but so far, so good.
Fibroids/[no longer] Chronic Anemia
I got lucky enough to seemingly inherit the tendency towards having cells freakishly multiply inside my uterus. I suspect that the first symptoms of fibroids I had manifested in 2012, which my doctor chalked-up to adolescence and hormone chaos. Though a long string of events that included a near death experience after I was informed I actually did have a fibroid growing inside me [despite my gynaecologist at the time saying I was too young… suck it!], and obviously it was the cause of my anemia and subsequent blood transfusions. Because yes, gynaecologic haemorrhaging multiple times is totally okay. [Sarcasm noted, I hope.] After I ended up in resuscitation following four blood transfusions in four months [with a one-month break], I finally ended up in the operating room for an emergency hysteroscopic myomectomy. [I told them CUT ME OPEN. They didn’t.]
My lowest hemoglobin measured 5.2, highest heart rate [that I am aware of, I don’t know what happened in resuscitation when they were rapidly hooking me up to monitors…] 170 . . . blood pressure? Normal.
As of my last Hb draw in December 2013, my hemoglobin measured a beautiful 13.4–I have a follow-up ultrasound in July 2014, and after that I’ll see my gynaecologist to follow-up attempt to convince him to let me quit the hormone pills and then he will tell me “If you were my daughter . . .” and not let me. You can read the whole story, including that doctor telling me to eat a steak [at which point I informed him of my vegetarianism] here.
And hopefully that is it. Forever. I’ve got enough badass to last awhile…
*Pick up some chronically badass-ness for yourself at the Paper Poppy Shoppe on Etsy. Not my shop, I just dig it :].