‘m going to get right to the point. I’m having difficulty right now dealing with everything that is going on. It isn’t any one particular thing, it is just life in general. Trying to live life with CRPS/RSD, gastroparesis, and the many other health challenges that accompany these two monsters is a bit overwhelming at times. I woke up last night crying in pain. I have a really high pain tolerance and don’t usually have enough pain to make me cry. I’ll give a few examples to help you understand. Several years ago, I had all four wisdom teeth surgically cut out at the same time. As the day of the surgery approached, lots of people warned me how painful the procedure and healing was going to be. Compared to CRPS/RSD, that was a piece of cake. Just this past year, I had a 3mm kidney stone. I honestly can’t say if I passed it or if it dissolved. I had pain, but never saw the stone. However, I was expecting much worse pain than what I had. I have seen lots of family members fight kidney stones and I did not suffer like they do. Mom thinks my perception of pain is different because I live with such a high pain level everyday. However, I think the stone just disappeared. I can’t convince myself that my kidney stone pain was as bad as what mom has had. As my last example, I was using a hammer a few weeks ago and hit my thumb. Yes, it was hurting, but not enough to stop me. I looked off from what I was doing for a second to answer a question someone asked me and when I looked back to finish hammering, I realized I had hit my thumb hard enough to split it open and blood was squirting out. Did I panic? No, I laughed and said, “That hurt, but I didn’t realize I’d hit it that hard.”
Now, I think it’s important that I mention a few things here. I’m not saying that surgical extraction of wisdom teeth, passing kidney stones, or splitting your thumb open with a hammer are not painful. I know all of these are very painful. I’m just saying for me, in comparison to complex regional pain syndrome, these pains were not that bad. I would also like to point out that just because I didn’t think it was bad, I still believe these are very painful experiences for other people. Pain is hard to explain, because no two people feel pain the same. While there are tests and machines to measure things like temperature and blood pressure, I don’t know of any gadgets to measure a persons pain level. That is why doctors ask us to rate our pain on a scale of zero to ten. There is not a way for the doctor to verify pain levels, so they have to base their decisions for treatment on our perception of how bad the pain is and how we are reacting to the pain. I personally hate the zero to ten scale because I don’t think it is an accurate measure of pain. A person’s pain level is very subjective. The way we perceive pain and the number we assign to our pain is based on how much pain we have faced in life. For someone who has never experienced pain, a small amount of pain is a big deal. Over the years, I’ve watched my perception of pain change. CRPS/RSD has made me back up and look at other causes of pain in a whole new way.
Now, back to the craziness I’m trying to cope with right now. I’m currently having similar things going on in my right arm as my right leg…pain, swelling, sensitivity to touch, and changes in temperature and color. My doctor has been having nerve conduction studies and others tests done to look for a cause for the issues I’m having in my neck, shoulder, arm, and hand. For a couple of years now, I’ve been battling pain and sensitivity in my right side neck, shoulder, arm, and hand. The doctor thought it was pinched nerves in my neck area. I agreed to try a nerve burning procedure (radio-frequency thermocoagulation). The first two times, it helped. After the last one, I started experiencing severe burning pain in my neck and shoulder. The doctor advised me not to have any more nerve burning procedures until we figured out what was going on. The nerve conduction studies were normal. This leaves me wondering if CRPS/RSD is now affecting my neck, shoulder, arm, and hand.
Thursday my right arm and hand turned a dark purple/gray color and started swelling more than common. I was also having pain from my elbow up to my picc line. I had been experiencing numbness, tingling, and a little swelling in that arm and hand for a couple weeks, but had been blowing it off as no big deal. I called one of the home health nurses and she advised me to go to ER to rule out a blood clot. The good news is they didn’t find any blood clots. The bad news is they couldn’t explain what is causing the pain, swelling, and discoloration. The ER doctor said it could be the blood vessel constricting around the picc line because it is a foreign object entering my body. He instructed me to keep an eye on it this week and follow up with my primary care. The ER doctor said the picc line might have to be taken out. Those of you who know me personally know that’s not an option. My body depends on that picc line for hydration right now. Without IV fluids I dry up like a prune and my skin starts taking on a corpse like color.
So, I sit her waiting for doctors to return phone calls. I’ve had several tests for other health issues that have come up. I’ve seen some of the results (the hospital patient portal allows me to see them), but I don’t know what they mean so I’m not ready to discuss those openly yet. It’s frustrating being in pain, not sleeping, and just waiting.
I share all of this not in search of pity, but in hopes of helping someone else. Too many people look at pain, crying, physical weakness, and the frustration, anger, and stress that often accompany illness as signs of psychological weakness. We’ve been taught anyone who shares these emotions is “wimpy”. I’m not going to lie, when I don’t feel good, I stay home. Some people have this idea that I’m always happy and full of smiles and that I’m not that sick because I “look too good” to be sick. I’ve portrayed this false perception by hiding my illness, pain, and suffering from the world. Honestly, I’m like everyone else. There are days I can’t smile. I cry behind closed doors and hidden by the darkness of night. Those of us living with chronic illnesses learn to hiding it because we don’t want the pity or judgment we get from others, but that’s probably not always the best thing to do. We are doing others an injustice by falsely portraying that life with chronic illness isn’t that bad.
I’m choosing to share this now, because I want all my chronic illness warrior friends to know they are not alone. Yes, I do cry sometimes. Yes, I get so frustrated and angry sometimes with trying to figure my body out that I just need to be left alone to scream. Anyone living with a chronic illness who says they never cry or become frustrated or angry is most likely telling lies out of fear that others will see these feelings as a sign of weakness, offer pity, or be judgmental. Crying…frustration…anger…stress…these are normal feelings. We all face these at times in life. These aren’t signs of weakness. They are a normal human reaction.
Last summer, I met some of the strongest people I’ve ever come into contact with. Those children living with pediatric pain conditions, and their amazing families, are the real reason I chose to share this. Children should not have to feel like they have to hide their feelings and emotions because others might see it as weakness. Somewhere along the way, humans decided that some emotions like happiness, excitement, and love are acceptable. However, emotions like sadness and frustration have been labeled as negative emotions and must be hidden away. Now, we wonder why mental health has become such a big issue. Yes, children need to be taught how to channel their stress, frustration, and anger in a positive way. However, we are doing them an injustice by hiding our own pain and sadness. These children need to know that they aren’t alone and what they feel is normal. They need to see and know that crying is okay.
We all need to work to change the perspective that things like pain and crying are not signs of weakness. Children aren’t born believing these are weakness. We all cry when we are born. Everything a child believes, the child has learned by watching and listening to adults. When we see someone suffering, we need to quit being judgmental and try to be supportive and look for a way to help the person. All to often, we automatically dismiss other people’s pain, crying, or talking about their health issues as being self serving because we “think” they are just seeking attention or looking for pity. It’s no wonder children are being bullied. Adults are teaching them it’s okay. Like I heard my Pappaw Conley say before he passed away, “Our actions speak much louder than our words.” I challenge each of us to take a stand and help make a difference. No one, no matter their age, should ever be shamed, made fun of, or bullied for health conditions beyond their control or human emotions like crying that are natural responses to stressful situations. If we want to fix the mental health issues our children are facing, we must change the way we as adults think, speak, and act. Children need to be taught empathy. All children, regardless of whether they have a chronic illness or not, want one thing…to be loved and accepted. If there was more love and support in this world, I truly believe there would be fewer crimes and unnecessary deaths.
I know what it is like to be bullied, ridiculed, and judged based on chronic health issues I have no control over. High school and college were challenging. Living life with rare chronic health conditions is not easy. I’m hoping by sharing my story I can help someone else be strong and stand up for themselves. We don’t have to make excuses, apologize, or be ashamed of things we can’t control. We don’t have to hide our pain and suffering. We know we are not seeking attention and what others think doesn’t really matter. I am choosing to try to make a difference. I hope that one day, people with chronic illness will not feel the need to hide who they really are because others don’t understand. By sharing, I hope I’m able to make the world a better place for someone else.