It had been a rough few days. My FMLA leave has run out out and my job is thus in jeopardy, however I remain too sick to return to work. Despite two leaves of absence in six months, horrifically toxic drugs and more hours asleep than I can count, I am not getting better. Combine that with a particularly jarring episode of "Call the Midwife" and a viewing of "The Duchess", I was struggling with the existence of human challenges and (to be brutally honest) misery.
Later in the day during which I was hitting a pretty low point emotionally, Samantha and Mark decided (with no awareness of my emotional state) that we needed a family fun day. We have been trying for literally years to get to the Minnesota Zoo's "Farm Babies" exhibit in April but never had the ability to go. Sam and Mark decided that our family fun day would be at the zoo and we would move as slowly as I needed to in order to get to the farm exhibit so that I would be persuaded to go. Despite my mood and the fact that I had been having a great deal of trouble moving much at all lately, I agreed to go because Mark and Samantha were both so ridiculously happy at the prospect of seeing the little farm babies. We called up Amanda (one of my two best friends) and asked her to join us.
The morning of the Farm Babies outing, I had obtained an hour and a half of sleep total. (It seems I am either sleeping all day or not at all lately.) So, we headed to Starbucks for coffee. My stomach was so upset that I could only sip water, so I wasn't terribly hopeful about my ability to enjoy the zoo. But I was damned determined to do my best in order to support Mark, Samantha and Amanda. They were all so excited to go and I wasn't going to let my body and my mood spoil things more than they had to.
In the excitement of seeing all the animals, I think that my party forgot I am ill. Because holy moly did they walk fast (except in the tropical exhibit where the smell was making me ill and I wanted them to move faster...)!!! And somehow, perhaps because of adrenaline and sheer will, I kept up. By the end of the zoo trip, I had taken a staggering 7,000 steps in 2 and 1/2 hours. For me at this point in time, that number is absolutely unheard of. And even though I felt almost constantly on the verge of falling over forward and running out of breath, I actually really enjoyed myself. Few things in life are more pleasurable than watching one's dearest loved ones in awe of the world around them. We joked and laughed and shared random facts about weird animals all the way to the very far corner of the zoo property... and the home of the zoo babies.
I am a sucker for baby animals. Like, ridiculously so. Many of you may not know that my dad and first stepmom ran a kennel when I was growing up. They also bred and trained dogs. As a result, I had regular access to newborn puppies, kitties and other creatures during my childhood. I once even had a kitty born in my lap during a van ride to get our enormously pregnant cat back to a stable dwelling. In addition, during my first year in Minneapolis, a couple of ducks laid their eggs in the courtyard of our apartment complex. When the eggs hatched, Mark and I decided to name each of the tiny ducklings after sweet treats. We visited Razzle, Flipz, Skittle, Taffy, Toblerone, Peeps and Twizzler each and every morning. When they grew big enough, we camped out each morning to watch "the ducky parade" as the little ones followed their parents around the courtyard in the most haphazard line ever. It is one of my favorite memories, simply because every single element of it is sweet.
When we got to the Farm Babies exhibit, we slowed down enough to feed the baby goats, marvel at the calves and giggle at the chicks. But it was only when we reached the final babies... sleepy, sleepy, tiny piglets, that I was reminded of a simple truth. Human misery and loss are indeed a significant part of the human experience. There is no denying that life can be almost unendurable at times. However, life has a way of allowing light to shine through the darkness just as consistently as the darkness finds room to tamper with the breadth and scope of light. That reminder had a profound effect on my perspective at that moment and in the days since.
A.A. Milne's Piglet once asked Pooh how to spell the word "love." Pooh wisely replied that "You don't spell love. You feel it." I tend to think a great deal about the things that bring darkness into the world generally and my life specifically. I suppose one doesn't go to law school to study human rights law without this sort of inclination. However, I also have the ability to shift my perspective significantly and immediately simply by allowing love and light to overtake that same darkness. I am so incredibly grateful for that ability... and for piglets.
Wednesday, April 27, 2016
Friday, April 15, 2016
The Saga of the Broken Ear Bones
As you all know by now, I am working with my physicians to figure out how I can successfully maintain a high-risk pregnancy. One of the most important elements of this process is weaning myself off of medications that could harm either me or a fetus during pregnancy. Although I have yet to attend my first visit with the high-risk OB (later this month!) I recently tried to wean off of one of my medications and things did not go as planned.
Before I was diagnosed with Lupus, I had several kinds of debilitating pain, including very, very deep bone pain in my long bones. The medications my rheumatologist provided for my Lupus symptoms significantly affected some of my pain for the better. However, other kinds of pain remained. After biopsies and other testing, I was diagnosed with Sjogren's Syndrome. The medications I was given for that condition (again) helped with some kinds of pain, but not others.
The two kinds of pain that remained after my first two diagnoses were:
1. Pain just under my skin that left me feeling as if I had horrible bruises all over my body. I could not be touched, I could not wear denim or shoes because the pressure of wearing them was too strong and I struggled tremendously with sitting due to the pressure just under my skin.
2. Excruciating pain (sorry to sound so dramatic... I feel like a doorknob... but it is true) in my ears whenever I would try to sleep. The pressure of placing my head on my pillow was so intense that it is hard to describe. When I was able to sleep due to sheer exhaustion, I was woken by the pain every time I turned over.
Thank heavens, I was eventually diagnosed with Fibromyalgia and both acupuncture and the medications aimed at those last symptoms (primarily Lyrica - which is a nerve pain medication - and Cymbalta - which is most often prescribed as an anti-depressant but also can significantly affect Fibromyalgia pain) helped tremendously.
One strange thing about Cymbalta is that when you take it for Fibromyalgia and wean off of it too quickly, it can apparently turn you into a very, very cranky person for awhile. I was warned about this when I started taking it. Recently, I had a several day stomach flu during which I could not keep even water down, let alone medications. When I finally felt better, I realized that I was out of Cymbalta and needed to renew the prescription. During the few days I was waiting for the doctor to get back the pharmacy (I realized that I needed more meds on a Friday evening... sigh) I became Serious Kassie Cranky Pants.
So, I thought to myself, "I have already been off this medication for a few days due to my prolonged stomach flu. Instead of waiting for the prescription, maybe I can just stop taking this medication now and avoid being a pain in the ass cranky monster one more time when I wean off of it nearer to when we start trying to get pregnant." Within two days of this decision, my ear pain came back. It felt like someone had turned my outer ear cartilage to bone and then decided to break it repeatedly. Knowing I was going to have to go back on the Cymbalta if I wanted to regain the ability to place my head on a pillow, I looked the drug up in the hopes that it is one of those medications that is safe during pregnancy. It turns out that it is a SCHEDULE C DRUG during pregnancy (especially during the third trimester... which also happens to be the time that it is hardest to sleep generally), may significantly increase the risk of spontaneous abortion and is not considered safe to use during breastfeeding. It may also cause neonatal adverse reactions including "constant crying." (I feel bad for the Jelly Bean already.)
After reading this rundown on just ONE of the TWELVE medications I am supposed to wean off of, I had the very ladylike reaction of yelling, "Oh, FUCK YOU," without addressing anyone or anything in particular. This is going to be a bumpy ride. On the one hand, having a miserable mother who can't sleep and is in constant pain can't be good for the Jelly Bean, and on the other hand, being exposed to this potentially toxic crap can't be good for the Jelly Bean either. I know that I have to make these decisions day by day, drug by drug. But what truly sucks is that if I had to pick only one symptom that I could be free of, it would be my broken ear bones symptom. And it turns out that this is a symptom I am likely going to have to push through.
I find it hilarious that I got pregnant with Sam at 17 by total accident and this Jelly Bean is requiring so much pre-conception work that I feel like getting ready for it is a full-time job. I guess life is just like that sometimes!
Before I was diagnosed with Lupus, I had several kinds of debilitating pain, including very, very deep bone pain in my long bones. The medications my rheumatologist provided for my Lupus symptoms significantly affected some of my pain for the better. However, other kinds of pain remained. After biopsies and other testing, I was diagnosed with Sjogren's Syndrome. The medications I was given for that condition (again) helped with some kinds of pain, but not others.
The two kinds of pain that remained after my first two diagnoses were:
1. Pain just under my skin that left me feeling as if I had horrible bruises all over my body. I could not be touched, I could not wear denim or shoes because the pressure of wearing them was too strong and I struggled tremendously with sitting due to the pressure just under my skin.
2. Excruciating pain (sorry to sound so dramatic... I feel like a doorknob... but it is true) in my ears whenever I would try to sleep. The pressure of placing my head on my pillow was so intense that it is hard to describe. When I was able to sleep due to sheer exhaustion, I was woken by the pain every time I turned over.
Thank heavens, I was eventually diagnosed with Fibromyalgia and both acupuncture and the medications aimed at those last symptoms (primarily Lyrica - which is a nerve pain medication - and Cymbalta - which is most often prescribed as an anti-depressant but also can significantly affect Fibromyalgia pain) helped tremendously.
One strange thing about Cymbalta is that when you take it for Fibromyalgia and wean off of it too quickly, it can apparently turn you into a very, very cranky person for awhile. I was warned about this when I started taking it. Recently, I had a several day stomach flu during which I could not keep even water down, let alone medications. When I finally felt better, I realized that I was out of Cymbalta and needed to renew the prescription. During the few days I was waiting for the doctor to get back the pharmacy (I realized that I needed more meds on a Friday evening... sigh) I became Serious Kassie Cranky Pants.
So, I thought to myself, "I have already been off this medication for a few days due to my prolonged stomach flu. Instead of waiting for the prescription, maybe I can just stop taking this medication now and avoid being a pain in the ass cranky monster one more time when I wean off of it nearer to when we start trying to get pregnant." Within two days of this decision, my ear pain came back. It felt like someone had turned my outer ear cartilage to bone and then decided to break it repeatedly. Knowing I was going to have to go back on the Cymbalta if I wanted to regain the ability to place my head on a pillow, I looked the drug up in the hopes that it is one of those medications that is safe during pregnancy. It turns out that it is a SCHEDULE C DRUG during pregnancy (especially during the third trimester... which also happens to be the time that it is hardest to sleep generally), may significantly increase the risk of spontaneous abortion and is not considered safe to use during breastfeeding. It may also cause neonatal adverse reactions including "constant crying." (I feel bad for the Jelly Bean already.)
After reading this rundown on just ONE of the TWELVE medications I am supposed to wean off of, I had the very ladylike reaction of yelling, "Oh, FUCK YOU," without addressing anyone or anything in particular. This is going to be a bumpy ride. On the one hand, having a miserable mother who can't sleep and is in constant pain can't be good for the Jelly Bean, and on the other hand, being exposed to this potentially toxic crap can't be good for the Jelly Bean either. I know that I have to make these decisions day by day, drug by drug. But what truly sucks is that if I had to pick only one symptom that I could be free of, it would be my broken ear bones symptom. And it turns out that this is a symptom I am likely going to have to push through.
I find it hilarious that I got pregnant with Sam at 17 by total accident and this Jelly Bean is requiring so much pre-conception work that I feel like getting ready for it is a full-time job. I guess life is just like that sometimes!
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