I recently posted about weakness and how I was taught not to cry. Not even alone. This past weekend, I traveled a ways from home with my husband to attend military ball. When we arrived I developed a severe allergic reaction to something unknown and ended up in the ER. I returned just hours after being discharged when I began to have tightness in my throat and painful swallowing and was treated for a mild anaphylactic reaction. 24 hours later, I had to return to the ER and be admitted to the hospital when the reaction worsened and I could no longer walk.
The journey of being far from home and in the hospital was horrible. The fear of not knowing what is wrong is awful. The facility was upfront that they were ill equipped to diagnose or treat me, and eventually we were sent back across the state to more ER visits, tests and appointments.
It is still unknown what is wrong. I still can’t walk. I can’t get in and out of my home, they are working to convince my insurance company to re-admit me and I’m waiting to see a rheumatologist.
You see, a few days ago, I was covered in hives, but otherwise, walking and taking my life for granted. Then, one morning, I woke up and couldn’t walk. No one knows why. I can’t have pain meds because I’m allergic to opiates, my joints in my legs are swollen and the swelling is spreading to my hands. I have skin discolorations that no one seems to be able to explain and no one has any idea what to do.
One day, I woke up unable to bear weight on my legs, so swollen I couldn’t put socks on, and unable to move my joints. The pain has been excruciating, but the experience has reminded me of all that there is in this world.
I was reminded that doctors need to know when you hurt. You can’t just tell them, they need to see it. Stoicism is NOT in your best interest no matter how you were raised. I was reminded that just because I am mentally a stubborn mule, doesn’t mean I don’t need help, simply that I’m too proud to ask for it or allow it. And that attitude has been detrimental as I have pushed myself to continue to try to be independent even when medically, I shouldn’t have. Situations like this are no time for pride, but a time for humility and a time to be willing to know that help from others is what will get you through it.
I got to see first hand, that being away from home, having not packed enough to be stuck in a strange city is hard. But that nurses who understand that you are scared and hurting but trying so hard to be up beat can make a huge difference. They let my husband sleep in my room, and sometimes in my bed with me when I needed comfort and never said a word. They sent volunteers in to offer to help him so that he knew that he could have help when he needed it too. And they were all gentle and kind to a couple who were stuck and stressed because the hospital was not equipped to offer the needed things, only to stabilize me to make it safe for me to get back home and to specialists and bigger hospitals.
I nearly sobbed when we arrived home and I was in so much pain I cried out each time we tried to get me into my wheelchair. We went to the ER unsure of what else to do at 10pm on a weeknight and had an ER doctor who was so compassionate that I knew immediately I would never be able to thank him for the two hours he spent trying desperately to get my insurance company to let him admit me back into the hospital. He ordered more tests, he ordered more exams and even tried to wake up specialists in the middle of the night to beg them to come see me. He fought for a complete stranger in a strange medical situation who was terrified and in pain. He didn’t just give me meds and send me home, he fought for and truly advocated for his patient until all avenues were exhausted and I can never express how much it meant to us to have someone on our side like that. Even though we didn’t get anywhere, just seeing it made us feel like we were somewhere that wasn’t going to just give up.
He then threw a hail mary pass and gave me a medication that all the other doctors I had seen had been reluctant to try due to a possible allergic reaction. He notified his nursing staff, administered the medication and watched me for a reaction in hopes that it helped instead of hurt. And it helped enough to get me home for a few hours when nothing else had. It was a risky move, but with no other choices, and being in a facility more than equipped to treat any possible reaction, his gamble paid off and has given me the first relief I’ve had yet. It might not be much, but I wiggled my toes two hours after the injection for the first time in three days.
I learned that I am my own advocate. Even when a doctor means well, if I am unwilling to speak up and fight for my best interest, not many others will. And while I was luck to have a few who have, doctors are not Gods. They are humans doing the best they can with what they have to work with and what their experience tells them. It’s not a time to be timid or afraid to hurt their egos, but a time to make sure you voice your concerns, your fears, your questions and your wants so that they may work with you to find a plan that is good for everyone.
And when there was nothing left for them to do but send me across the state, they helped us find a charity that donated a wheelchair to us. Such a simple and small gesture that decreased just a bit of extra stress we didn’t need. Trying to find a wheelchair rental and figure out how to rent it, get it to the other side of the state, and then back at some point was a logistical nightmare. This charity gave us a brand new chair and when we said we weren’t sure if we could donate it back once (fingers crossed) I’m no longer in need, they said give it to someone else in need. That’s all you need to do. Then they tried to give us other equipment for down the road, such as a walker and canes. We didn’t have room to accept them and really didn’t want to take any more from them so that others would have those items if need be, but such a simple act of kindness and thoughtfulness from a charity I never knew existed, that gives away items I never would have thought someone would, was enough to make me want to hug the people I never got to meet who made that happen for us.
I have lived a selfish life. I donate to charity and help friends, but I have never given much thought to the people who work tirelessly to help others behind the scenes if they weren’t my friends. I have lived a life of pride and unwillingness to ask for help and have been forced into a position of humility and gratefulness to a network of people who have no idea that they are the only reason I even got to see the inside of my house today.
To the ER Doctor who fought for me, my health, for my best interest, I thank you. For being willing to throw a hail mary in an attempt to find ANYTHING that might help, I thank you.
To the nurses who rushed to find the last sleeper chair and get it into my room so my husband didn’t have to leave my side, I thank you. For coming in in the middle of the night to check my vitals, but being willing to do it in the dark so that my husband and I could try to get a small amount of sleep, I thank you. For each of you laughing with us, and holding our hands and understanding the stress and fear, then coming in at shift change to say goodbye and wish me luck in this journey to recovery, I thank you.
To the charity, the donors, and the hospital staff that facilitated taking one less stress off our plate, I will find a way to repay you.
To the universe, for my lesson in humility, my lesson in gratefulness and thankfulness and for allowing the stars to align so little things could go right while the big things were going wrong, I cried today, because you reminded me of the selfish creature I have been.
I’m a good person, but not as good as many.