Thursday, January 23, 2014

Questioning the Status Quo

As you can imagine, I've been through the ringer when it comes to medical testing (as have most of you). Some were simple blood draws…though up to 8 vials at a time. While other tests were much more painful. Think bone marrow biopsy and electrified probing needles. Most were just at varying levels of discomfort. A topic came up on a CVID group about knowing when to speak up for yourself when it came to testing. Most agreed that they often suffered tests in silence because they didn't want to come across as the problem patient or cause a scene. I have been guilty of this in the past. Not so much now. You can politely complain or question something that is about to be done. I recently had an experience that made me look at things from the tech's perspective as well.

Sometimes when it comes to my medical issues
I feel like grass being blown about by the wind,
but I take control where I can to calm the breeze
and regain a place of strength.

"Wildness By The Water"   7.25" x 11"
Acrylic on Masonite   $375 

I'll start with the polite questioning scenario. A week ago I had a dermatology appointment to have a new rapidly growing mole examined. It would periodically itch intensely and was changing color. Being fair-skinned, blue-eyed with a healthy dose of red in my hair and having a basal-cell mole removed in my early 20s, I was worried. The dermatologist had a young doctor following him around that day. I explained my concerns and stated that because of the immune deficiency I was more susceptible to cancers. He looked at the spot and said he believed it was a benign growth, but that if it bothered me, he could freeze it off. I paused a moment and said, "How positive are you that it isn't cancerous?" He responded with, "There are some cancers that may not look like cancer." "Hmmm, I would feel much better if we went ahead and biopsied this." He said that was fine and we did the procedure. The young doctor observed all this and started asking me questions about the immune deficiency and if my family had related issues as well. He also generously took my jacket as the dermatologist looked at additional moles on my arms and back and set it with my purse. I was thinking, I hope you retain that bedside manner as the years pass and that you understood my concerns and reason for asking for the procedure. 

At that point the nurse was handing a needle to the doctor and I said, "that's just lidocaine, right?" She said, "Oh, yes." Immediately the dermatologist said, "No, it has a little bit of epi in it. Do you have problems with that?" Not exactly. I explained I am also prone to heart racing and that it was possible the epinephrine might trigger it. So he asked the nurse to get a syringe without epi. I was glad I had spoken up. I had a phone message yesterday that the growth was indeed benign, but I don't regret having it confirmed one bit.

I also recently had my left breast examined again to check for tumors. I had a mastectomy of the right side in September. My doctor just requested a sonogram, but the imaging center insisted on a screening mammogram and then after looking at it called me back for a diagnostic mammogram before we ever got to the sonogram. The mammography tech was very nice and the policy certainly wasn't her fault, though I did question why we were doing this since it wasn't on the order. She got noticeably flustered and I felt bad. When it was all over she said to me, "I know you have been through this all before, but you were really patient." I replied that I was just thinking that this didn't hurt nearly as bad as the last time I had it done. At that point she absolutely beamed. She started telling me how she was really conscious of the psi that she was using and had done tests that showed, past a certain point, additional compression didn't improve the detail in the digital files. She really tried to make the patient as comfortable as possible. I was having a difficult time not smiling really big at her enthusiasm. I had just completely made her day with my offhand remark. I thanked her for her attention to detail and as I left the room thought about how many women must complain during the procedure. It's not pleasant. Someone is moving private parts of your body around and placing you in awkward positions. As an artist and graphic designer, I'm used to positioning models, product or a set up for a still life painting and the direction she was giving verbally or her physical positioning of me; I never once thought it odd or unusual. I do the same thing in a different setting, but I can see how just about everyone else would find it strange and feel vulnerable. I am going to make a big effort from now on to thank techs that do a good job. They deserve it.

Real or Imagined

I told Ed last night that I had rejoined a Facebook group for CVID…my immune deficiency…and that I kinda wish I hadn't. Since this one is a closed group, people are much more open about their problems and I was just about in tears reading posts. People having to choose between paying their mortgage and paying insurance and thinking their families would just be better off without them. Losing insurance means losing the antibody infusions. No one can afford them without insurance and for many it's still a struggle with insurance. Right now a major insurance company is forcing patients with a CVID diagnosis to cease treatment for 4 MONTHS in order to PROVE they still have the illness. One week past my normal infusion schedule and I'm in pain and sick. 4 months could kill a person. They are also just refusing to cover the treatments for many altogether. Insurance companies deciding treatment, not doctors. 

Then there are so many who have family, friends and spouses that think it's not real or that they are somehow causing the problem by not eating right or not taking the right supplements. They accuse them of just being lazy or stupid. People whose family members have not spoken to them for YEARS just because they are sick; because they don't understand the genetic nature of the illness or the variableness of the symptoms. The online community is all they have in the way of emotional support. Many are too sick to work regular jobs. A lot of us have secondary autoimmune conditions which are worse than the primary immune deficiency and/or have cancers. They are barely surviving. One bad illness can wipe you out financially. Imagine one that is lifelong and expensive to treat.

I want to thank my husband, my family, my friends, my coworkers and my doctors for believing. For not making me feel this isn't real and for the understanding and support. Coworkers stay away from me when they are sick and are understanding of doctor appointments. Friends insist on accompanying me to appointments to provide moral support or have lunch with me during an infusion. My husband has learned to devise meals that I can eat and are delicious. He does the vast majority of the cooking. He is also there for me when I occasionally indulge in a bout of self-pity. I appreciate this so much. It means everything. I am a strong person, but it would be so much harder without your support.

I am thankful I can still work full-time and function in the world, though I have to watch my day-to-day energy expendature. I have a great job, a creative, challenging job, that I enjoy with good benefits. I can sell my paintings for additional income. Again, something that is already a passion for me. I have a house that is paid for because my late husband, Tom, was adamant about having enough insurance to cover it if something happened to either of us. I make enough money, so that my husband, Ed, has been able to go back to college and pursue his passion and he is happier because of it. I have people that love me. I am in a much better place than so so many of my fellow zebras. I also know I could lose it all in a blink. That I am walking on a wire and doing everything I can to not fall.

The Zebra painting is sold, but appropriate since those with rare diseases refer to themselves as Zebras after this common saying in the medical community.

"When you hear hoofbeats think horses...not zebras."

Friday, January 10, 2014

Wounded Animals

My husband, Ed, tells me I have a huge heart, but he's definitely biased. For much of my life, people who didn't know me well would describe me as aloof. They would assume I thought I was better than them and would go out of their way to not talk to or include me. I don't entirely blame them for the misjudgment. In person, I'm not easy to get to know. Introversion and shyness are not interchangeable, but I am a person that defines both these terms. Painfully so for most of my life. I avoided eye contact, didn't speak first or call out a hello, generally looked at the ground while walking. That last one had a benefit, though, I found a lot of loose change over the years and a winning lottery scratch off ticket. I hated small talk and am still not that good at it, so I avoided getting into situations that might require it. I can be overly blunt which some people find hurtful or just plain unfriendly. In a way, I ostracized myself, but never because I thought I was better. Quite the opposite.

As a child, this made me a target for "Mean Girls." I looked like them. I could have been one of them, but instead always had my nose in a book, was focused on my grades and my art. I liked science and animals such as snakes and bats. I was weird. I didn't NEED to be one of them and I think that is what really set them off. I did want friends and always had a close-knit group of like minded people around me. I didn't want to be popular. I didn't want the drama, but they brought it on me anyway just because I was different.

I gravitated to animals from an early age. I had an innate understanding of them. I could read their body language. They were more predictable and less judgmental than humans. Not just dogs and cats. I could get closer to wilder animals than anyone else I knew. Maybe because we shared an understanding of fear. I never did anything to cause them to distrust me. Building trust is the key to everything. I didn't trust people because of the way I was treated. I trusted animals. This led me to adopt many abused and abandoned creatures throughout my life…from a large lizard that was lost in the storeroom of a pet shop, to a parrot who had his wing torn up by a previous owner, to many dogs and cats.

The most recent is "Pretty Boy Floyd," an Australian Shepherd. We've had him for just a couple weeks. I have a special affinity for this dog breed. He was described as 'shy' but it is much deeper than that. He is terrified. He clung to the nearest person, but was scared to be restrained in any manner. He refused to leave the concrete when we tried to take him into an outside run at the animal shelter. On the way home, it was an hour and a half drive, he had diarrhea twice and threw up once from fear and stress. At home, he thankfully got along with the other dogs and cats. Floyd's had to learn that he has a bowl all his own and he doesn't have to steal mouthfuls of food and run away to eat it. We've had to be careful when we praise him for learning something. The excited, happy sounds scare him. Talking too loudly scares him. He seems bewildered when we hand him toys and nylabones to chew. His look says, "Really? This is for me? It's mine?" as he takes it gingerly. Any sort of correction to behavior results in him believing he's been banned from the activity altogether. In spite of this, Floyd is learning rapidly and is trusting more. When we took him to the vet to be checked out and get shots, I think he feared being abandoned again. He struggled out of the harness, then chewed through the leash while still in the car. Going home was a completely different story. His demeanor changed entirely. He was alert and happily looking out the windows. We gained bonus points with him that day. We didn't leave him as he feared. He just needed an opportunity to be happy and learn that life can be good.

I think the majority of us are wounded animals, no different from Floyd. The Mean Girls were mean because something inside of them was broken by another that caused them to lash out. Their victims often silently accepting it and many even blaming themselves. Life is filled with loss, difficulties and disappointments that can overwhelm us. It's no wonder that compassion seems lost. I pushed away most others because of the fear of being hurt. When I first got sick, I kept it to myself, didn't ask for help or understanding, didn't show the pain or fear. I didn't think others would want to visit me in the hospital, so I didn't ask, though I was lonely and scared. I relied too heavily on my husband, Tom. He was shouldering a huge burden caring for me, the house, the pets, dealing with medical insurance and bills and trying to work a full-time job. He too only shared his pain with very few others. 

When he died, something in me broke. I had just lost the one person I trusted fully and my entire emotional support system. The wall I built around myself for protection crashed down. I was completely exposed. For the longest time I had believed that people couldn't change and that we were never victims of circumstances beyond our control. I felt that if something bad befell a person, it was their job to fix it. Bad things happen for no reason every day and sitting in a heap on the floor lamenting it, but doing nothing solves nothing. What I failed to see was that sometimes it's not a lack of wanting to make things better, but truly not knowing where to begin. Though I would do nearly anything for an animal, I saw people differently. I had little compassion for my fellow humans. Due to my own pain, choosing to see only how we hurt each other and hurt the creatures around us. Then I did something that not only surprised my few close friends, but me as well. Instead of walling myself back in, I shared my pain. Maybe my struggles will help others dealing with the same issues. I didn't expect any direct feedback. I wrote for myself with the thought that maybe others were reading. What I received was an outpouring of compassion. Compassion that I didn't expect and in some cases from people that had been the cruelest to me. I felt connected to the human race for the first time in a long time.

People are kind. People will help if you ask. Given the opportunity, people will rise to the occasion. It was enlightening. Conversely, others who are struggling, who are down so deep that they can't see the sky, who are bitter and hopeless aren't always a loss. Compassion, attempting to understand, looking outside of our own personal pain, we can use these things to help those burdened with hurt and anger. People can change. People can learn to trust again. Something as simple as a smile or a compliment on a job well done can make a person feel like they mattered. That THEY made a difference. We get caught up in our own problems and struggles, but sometimes in helping others we actually end up helping ourselves heal our own wounded animal.

Maybe I do have a big heart, but only because I learned that I was wrong about people. Only because I was shown compassion in response to my pain and loss and that gave me the ability to show it to others. Being able to share my struggles and receive feedback has lifted a smothering weight off me. I'm lighter and happier and that gave me the ability to open my heart to another and be happy.