My mom forwards me some really silly things on Facebook Messenger. Sometimes I stare at the screen and ask myself, why in the world is she sending me this? The last few days she hasn’t hasn’t been feeling well and my messages have become eerily silent. Sometimes we don’t realize how much something means to us until it’s gone. Every time she starts to get symptoms again I get really scared. Her health has been a challenge the last few years and it’s never going to move back in the other direction. I know she won’t be around forever. None of us will but the thought of someday not being able to talk to her on the other end of the phone everyday fills my heart with a pain that is far too deep for words. Tonight I am reminded that life is precious. We have to love people while we are fortunate enough to have them around to love. We have to make the call to say you matter, you are so important to me. Life can change in an instant and we have to have lived and loved enough to always be prepared for the most unexpected scenarios. Reach out to someone and let them know you care. That is the greatest gift you can offer someone…your time, and attention, your affection and your appreciation for having them in your life. Put your time into the people and things that really matter. Make every minute count.
I think it was Dr. Phil who said, you can’t heal what you don’t acknowledge. Writing is like therapy. I can feel my heart beat slower as I type the words. Blogging brings about a sense of calm that I can’t seem to find anywhere else. It’s like wringing out all my thoughts and those feelings that linger behind. If I don’t write about it, it stays there, stuck inside of me so it’s time to write.
There are some things you can never prepare yourself for, no matter how hard you try. It’s no secret that I’ve been struggling this week. The truth is, you never think it’s going to happen. You completely deny it by blocking it out of your mind because it’s a place that is just too painful to go. I try my best not to think about what my life will be like when I can’t dial the phone and hear my moms voice on the other end. I just cannot go there. Just writing about it causes my chest to tighten and I feel like I cannot breathe. I go into complete panic mode and thats where I stay.
My mother was brought to the hospital last week. She gave us a scare that nearly broke me in half. I couldn’t write about it, I couldn’t talk about it. I had to focus on breathing in and breathing out and not let my mind go to the worst possible place. It’s been one of the hardest weeks of my life and it keeps on coming, one blow after another. There are some things medicine cannot cure. When parts of our body are damaged, we must live with what we have, the best we can. I am hoping she gets to go home tomorrow but she has a difficult road ahead of her. I am so grateful for every day I hear her voice. It’s so easy to forget how big the little things really are.
Don’t take anyone for granted. Always leave people with loving words and show them in your special way how much you care. We all know how the story ends, we just can’t predict when we will get to the last page. Be kind, love deeply and be grateful for the special people in your life.
Do you know what cures just about any ailment? Any guesses?
My cousin had a stroke a while back and it is very difficult for her to walk. A year ago, her wheelchair was stolen and she’s been confined mostly to her little house. Today, when I peeked in on Facebook, an old school friend of mine posted that he had a wheelchair for anyone who needed it. Not only is he offering it free of charge but he is making a long trip to deliver it. When I think of superhero, he is who I see. This is not the first random act of kindness I’ve seen from this amazing man. He is seriously the best person I know. His heart, his compassion and his will to do good inspires me every single day. Thank you Andrew! May there be many more people who follow in your footsteps. You are amazing and the world thanks you.
Today I am finally well enough to get out of bed. I am diligently cleaning light switches, doorknobs and all the other tedious things we dare not pay attention to on a regular basis. Disinfecting. What an important process. Not only do we need to disinfect our homes but it would be beneficial to disinfect our lives. Clean it up, get rid of the excess gunk that’s been building up and weighing you down. There are so many parallels in life if we are open to recognizing them. So get to work! Start cleaning out your life and you will start to feel better immediately.
When it comes to being a mom, I have learned a great deal this week. I cannot kiss boo boos and make them better. I cannot heal broken bones. I cannot take away a fever or my child’s pain. I cannot fix much of anything. What I can do, is always be there through the good times, the sick times, the hard times, all the time. That is my superpower. I will always be there and hope that will be enough.
They say we don’t really know what we have until it’s gone. Well, I’d like to think I take time out each day to be grateful for all the blessings around me. However, I learned it is one thing to talk the talk and another to walk the walk.
If you regularly read my blog, you know I haven’t been feeling well lately. I am happy to report that today I am feeling so much better than the last several days. I was really down and out. I may have said I was grateful for my health in the past, but I can tell you, after feeling so awful and miserable, I am surely grateful for my health now.
Maybe there is some silly truth to that simple statement. Even the most grateful people can take the smallest and simplest things for granted. It is only when we lose something and then gain it back, do we truly understand it’s magnitude and importance.
Count your blessing today and in each moment. You just never know if tomorrow one of them may be gone. Appreciate your health and your body and all the people around you who share your journey in this life. Don’t waste time being angry or miserable or ungrateful. We really don’t have time for that. Remember everyday is a special gift, what will you do with yours?
I guess I am most disappointed as a nurse at the lack of proper diagnosis and follow up of care. If you remember, 3 days ago I went to Minute Clinic complaining of fatigue, and pain on ONE side of my throat especially when opening my mouth. So, today I woke up with severe pain in my ear and my throat hurts so bad I can barely speak. I took my allergy medicine like a good little girl but I just knew there was something not right. So, today the lovely nurse practitioner who missed it the first the time discovered I had a peritonsillar abcess.
Funny how I noticed the small white pocket before I even went to be examined days ago. And now, it is bigger and much more evident. I guess what really bothers me is it starts out feeling just like strep throat. Then, it takes a few days with no new symptoms for this unfriendly little pocket of bacteria to form. What should have given it away if someone was listening was that it was only on ONE side. First clue that it was indeed not allergies. Also, I believe if she took the time to really look she would have noticed the small development of the sore the first time she saw me. So now, here we are 3 days later, much worse because of not having been on antibiotics and I can barely open my mouth to speak. I now have pain medicine for my throat, pain drops for my ear and no energy to get out of bed and pack for the vacation I am leaving on in 2 days. Oh, and did I mention if the abscess becomes bad enough I have to rush to the hospital because I may not be able to breathe? What if I hadn’t gone back today? What if I had believed this nurse was right and continued to take allergy medication that never would have worked? The worse part? When I called to try and talk with her I got a switch board operator who took my information and told me someone would be back in touch with me in 24 hours. Are you kidding me? I jumped in my car and drove there and in 10 minutes we were sitting face to face. I reminded her she didn’t even take the time to look in my ears when I was there. I seriously thought I had an ear infection that had backed up into my throat. It was the redness that had grown on one side and the ear pain on the same side that alerted her to look a little closer. What really gets my goat is she knew I had swollen glands in my neck when I was there. Even if I didn’t have a fever, there were signs of infection. What in the world is happening to our health care system? We call back a doctor or a nurse and get a switch board operator from where? I am disgusted and truly worried about the lack of attention to the patient and the amount of time spent talking into and typing on a screen. As a nurse, I am devastated and desperately hoping for some kind of change.
As for me, I am back in bed hoping one of these days I will wake up and be able to talk and swallow again pain free. The infection is worse and now I have less time to get done what it is I have to do. But, for now I will trust my body that is screaming for me to stay in bed. I will rest and be patient and give myself the time I need to heal. It’s by listening to others that we learn the most. Hopefully, you have learned something from this unfortunate story. It is your body. And when you truly believe there is something wrong, usually there is. Persistence and trusting your own instincts is the key.
Do you ever find yourself trapped in between worlds? I am often struggling to survive in a place somewhere between what I believe should be and what actually is. The mind is full of opinions. It has all kinds of thoughts and notions that create a battle within to fight for the one you most believe in.
Just yesterday I went to Urgent Care. My throat has been bothering me for a week now and every day it hurts more and more. The nurse practitioner did a rapid step test and the result was negative. She dismissed my pain as allergies and sent me back home. I believe she jumped to the conclusion based on her own misconception that strep must be accompanied by a fever. In all the years I’ve had strep, not once did I run a fever. And, it’s crazy I know, but often my initial rapid strep test result is negative only to have the one sent out come back positive. So I ask, how did she jump to the conclusion I must have allergies? I am a nurse myself, and although I have not practiced in many years, there is always one thing I find surprising every time I make a trip to one of these care facilities. The first is that never does anyone look in my mouth before swabbing my throat. Call me crazy but when I worked in a doctors office, I would shine that little light in the back of someone’s throat and take a look. Then I knew for sure that I would swab the exact spot that looked the worse. Secondly, never once did she look in my ears. Hmmmmm….is there drainage? Are my ears red? How in the world can you make a diagnosis without seeing and knowing the whole picture. Your instincts aren’t always right and no-one, not a single person can ever really know you as well as you know yourself. Let this be a lesson. Trust what someone tells you especially if they are trying to get you to recognize a problem. You are not an expert for somebody else. You have not walked in their shoes, sat a minute in their body, experienced life through their eyes so you will never fully understand.
Needless to say I came home and got in bed. In fact, I am still in bed and woke up running a slight fever. Lucky for me, I had an old antibiotic sitting in my cabinet that was barely started because of the way it upset my stomach. It’s only been 24 hours since the first pill but my throat is responding to it. What does that tell me? Whatever the problem, it is certainly NOT allergies and there is no doubt that I did indeed need an antibiotic. I knew from the moment I walked in this was different than the usual drainage making the throat red scenario. We need to listen to others and pay closer attention. We are so distracted and removed that it’s even starting to be difficult to make a diagnosis. Even doctors and nurses are spending more time staring at a computer screen then they do looking into the sick eyes of a patient sitting across from them. Maybe that is what they miss most easily? I could usually recognize when someone came in for an appointment that they were really sick because the way one feels reflects through their eyes. That is how I would know my kids were getting sick long before they had a symptom.
That’s just my two cents for the day but I believe it is an important lesson. Focus more on each other. Not what we believe we see, not what we believe we hear, but rather really look at the person who is sitting across from you and leave all your preconceived notions at the front door. Listen beyond the words, see beyond the face and you may see something completely different form the initial picture you first had of someone when they first walked through your front door.
Sometimes it’s hard to understand what someone is going through, even if we try to put ourselves in their shoes. I remember when I worked in a doctors office years ago. We had an oncologist in our office, and sometimes I was given an opportunity to work with those patients on days he needed some extra help. I looked so forward to seeing some of those courageous patients walk through our door. And if for some reason one of them didn’t show up, I didn’t dare let myself wonder about the reason why. These people became my heroes, and taught me more about living than I could ever learn myself in an entire lifetime. Most were very upbeat and gracious. They weren’t like our regular patients that complained if we were running 4 minutes behind. They told stories and would often put their hand on my arm. Touch was something that was extremely important to them. Sometimes, it was easy to tell when they weren’t feeling well. They were quiet and appeared painfully tired.
Sometimes, people suffer in this same manner, but on the outside, there is no indication that anything is wrong. They look normal, they act normal, and you would never guess in a million years that they suffer from a debilitating disease. Unlike cancer that manifests many outward physical signs, Multiple Sclerosis is a disease that goes unnoticed by those that aren’t afflicted. These people suffer quietly and often don’t complain about the battle they fight each and every day they must will themselves out of bed. I spent a great deal of time reading people’s stories of what’s its like to live with this silent, yet difficult disease. The best explanation I found was by a blogger several years ago that described some of the symptoms in a way you and I could understand. I’d like to share some of those with you:
What You Can do To Understand Painful Heavy Legs… Apply tightly 20 lb ankle weights and 15 lb thigh weights then take a 1 mile walk, clean the house, go shopping and then sit down – how ya’ feeling now?
Painful Feet… Put equal or unequal amounts of small pebbles in each shoe then take a walk.
Loss of Feeling in Hands and/or Arms… Put on extra thick gloves and a heavy coat then try and pick up a pencil, if successful, stab yourself in the arm.
Loss of Feeling in Feet and/or Legs… Ask a doc for a shot of novocaine in both of your legs and then try and stand up and walk.
Tingling… Stick your finger in an electrical socket – preferably wet
Trouble Lifting Arms… Apply 20 LB wrist weights and try and reach for something on the highest shelf in your house.
Spasticity… Hook bungee cords to your rear belt loops and rear pant leg cuffs then for your arms hook bungee cords to your shirt collar and cuffs on shirt sleeves
Balance and Walking Problems… Drink 100 proof grain alcohol and then sit and spin in an office chair for 30 minutes, now try and walk.
Bizarre and Inexplicable Sensations… Place tiny spiders on your legs or arms and allow them to periodically crawl around throughout the day.
Pins and Needles… Stab yourself repeatedly with needles all over your body or better yet….Get a large tattoo.
Dizziness (Vertigo)… Get on a gently rocking boat all day and all night and take several walks around the deck.
Fatigue… Stay awake for two full days to induce incredible fatigue and then cook dinner, clean the house, walk the dog and see how you feel at the end of the day
Vision Problems (Optic Neuritis)… Smear vaseline on glasses and then wear them to read the newspaper.
Memory Issues… Have someone make a list of items to shop for and when you come back that person adds two things to the list and then they ask why you didn’t get them. When you come back from shopping again they take the list and erase three things and ask why you bought those in the first place
Depression… Take a trip to the animal shelter everyday and see all the lonely animals with no home. You get attached to one of the animals and when you come back the next day you come in while they are putting that animal to sleep
You want to know the saddest part about this story? My sister suffers from MS and yet Ive never asked her what MS feels like. Maybe, because deep down, I really didn’t want to know. It was easier for me to look at her on the outside and bury the fact that she battled this cruel, debilitating monster on the inside each and every day. I would have to look at the selfishness of myself when I complain of a headache and sore muscles and realize that her body feels like mine after a 2 hour workout merely because she gets out of bed. I would have to stare the guilt I feel inside right in the face and not ask god, why her and not me? But truth is, I couldn’t go there in my mind, at least not until today. But hopefully, after reading this, maybe everyone, especially the people that are closest to her will lend an extra hand, not because we have to, but because she needs us to. It could be the difference in whether she can sit up at the dinner table with her family at the end of the day. Imagine having to choose where to put that tiny bit of energy your body will allow you to use that no amount of sleep or rest could replenish. Do you make the beds, or clean the house knowing that may end you up in bed the next 3 days? Do you lie there wishing someone would have given a bit more help because God knows you would never ask. You don’t neglect to do things because you don’t want to, your mind is screaming at you to get all these things done. But your body, says no way, it’s just not gonna happen, at least not today. So how do you deal with the depression in your head. Not the depression that is caused by your disease, but by the depression inflicted by those people around you that continue to look the other way? I am so sorry dear sister. If I could give you my healthy, strong mind and body, believe me I would, because I know you need them much more than I do. That is not my choice though you see, that is Gods. So, let’s come back to the question that haunts my mind deep in the night….why you? I don’t have that answer, I don’t know His plan, but I do hope my part involves telling your story in a way that helps people step inside of your difficult and discouraging world. You are a hero to me. The fact that you push yourself selflessly for others at your own expense, and NEVER ever remind us you have a debilitating disease while fighting your mind and body every day just to get out of bed shows how remarkable you really are. Maybe that is why God chose you, because although your road may be difficult, you have the will to continue to walk it, and by the way, you do so with grace.
Next time you wake up, and there’s a whole list of things to do on your plate, remember my sister, and all those others that struggle with MS. Be grateful for your healthy mind and body and that you have the strength and energy to get through your day absent of fighting a difficult disease. Some are much less fortunate, and imagine what we sound like to them, going on and on about how difficult our day is while there are the sick heroes around us that never complain.
MS Awareness Week begins March 11th. If you know someone who suffers from this terrible disease, please show them your support. There are so many things you can do to make their lives a little easier. A random act of kindness can go a very long way. Don’t turn away because it’s too hard to look. Look long and hard into the eyes of that person and share some of their pain. If you live with someone that has MS, take care of yourself and your own responsibilities. They have enough trouble trying, sometimes unsuccessfully, to carry out tasks and get through their own day. Offer them that type of peace so they can focus on putting their energy into what they need to and not into what you could have done for yourself. Remember, these courageous people don’t want your pity, but they will always welcome your understanding and support. Hug someone with MS today because after all, a hug always makes someone’s day a whole lot better.