Once again…I have been remiss in writing lately. I have been busy, melancholy, scared and didn’t feel good for the last few weeks. As with most of the United States…..we have had bitterly cold weather mixed with snow and ice. I am very thankful for my warm fireplace, plenty of food in the house to cook, no frozen pipes and no lack of power. Many around us and across the nation struggled to have even one of those things…so I am beyond blessed. I am hoping everyone is getting back to normal by now. I have to share a little story that happened today. As a person that is immunocompromised I have to be so very careful in anything I do. I have shared before that I often do grocery ordering online and then pick it up. I also have to do this with medication……all at the same place. But you have to park is separate places for each. Well…..this morning I picked up my grocery order and then went around to the front of the store to get in the allotted parking spot to pick up my prescription….nothing new. But, today there were no parking spaces. So I found a space 4 slots down and dialed the pharmacy to see what they would have me do. They were very nice and said they would send someone out with my order and try to find me. I waited and watched……waited and watched…..waited and watched. Then my phone rang and the young lady said that the worker could not find me and to call back when I found a slot or just come in. I explained to her that I am immunocompromised and can’t come inside….DRS ORDERS. So then I waited and made another pass at the parking situation…..nope….no dice. So I waited a bit longer and finally two spots opened up. I then proceeded to the allocated parking spot and called the pharmacy again. As I was waiting for the tech to deliver my medication I watched as the two spots across from me, that were marked for pharmacy pickup, were NOT being used for that. Both of the vehicle occupants simply had gone in, had gotten groceries and then slinked back out and into their cars. But…it was not my place to say anything…..maybe they had extenuating circumstances. By that time I was a tad bit annoyed and feeling like slug scum because it is raining here today. When the tech came with my prescription I decided I would say something. She said that they try to keep people from doing that…but didn’t have much success. She said next time it would probably be faster and easier if I just came into the pharmacy. I explained to her once again my medical circumstances and I kid you not…she looked at me like….really??? you don’t look sick. Well…I kindly gave her my car, paid and left. On the drive home I was thinking about this look on her face. She may not have meant anything by her words or expression. I am just having a bad MULTIPLE SCLEROSIS day. Everything hurts…bones, muscles, fingernails, hair, hands, feet and even eyeballs. I would like to sit and cry…but I am not sure what good that will do. I have been drinking my little concoction with ACV, ginger, honey and turmeric……..alot of cups are needed today. Anyway…back to my thought….you don’t look sick…hmmmmmm…..really what does MS look like? Well I will try to show you. On the picture that follows is an example of the lesions…see the white splotches in the pictures? Those are lesions. These lesions are basically holes is your brain. Whatever was in that part of your brain is gone. Lesions can occur in all three parts of your central nervous system….brain, spinal cord and optic nerves. The lesions interfere with the brain’s ability to communicate with the rest of the body……which can impact both physical and cognitive abilities. There are two types of brain tissue…grey and white matter. The grey matter is where the communication signals start and the white matter is what carries messages from one part to the other. The lesions or scars can change and grow over time. They are with me always. I can’t take a pill or do an exercise to make them go away. Or at least I have not been told of any such thing in existence. These lesions cause all kinds of symptoms….here are some of mine….extreme fatigue, trouble walking, loss of balance, numbness and tingling, difficulty concentrating and memory, word finding, and pain. Not every person with MS has any or all of these symptoms. They may have an entirely full cookie jar of their own treats. See….MS is not the same for everyone. We are all different. No two of us are alike. If we are blessed enough to not have to use assistive devices (wheelchair, walker, cane, etc) then we may not “LOOK SICK”. But I can guarantee you if you could see our MRIs then you would be able to see it. If you saw us trying to get out of bed in the mornings and stumbling across the room while holding onto furniture because we can’t feel our feet yet or our sense of balance hasn’t kicked in yet…you might see it. If you were at a family function and you completely black out, fall over in the yard flat of your face while your mother screams in terror, then you might see it. If you are having an important conversation with a loved one and your word finding skills make you say something silly that doesn’t make sense and pretty much makes you cry because you can’t explain what you are trying to say….then you might see it. If you can’t go anywhere since last March 2020 and you miss family gatherings, birthdays, weddings, funerals, anniversaries, all the holidays and get-togethers with your friends that you have done for years…..you might see it. If you sleep the entire night and wake up feeling like you can’t breath….stumbled to the couch where you sit up camp for the rest of the day and avoid movement or liquids for fear of having to move…knowing you have no energy to use the bathroom and the pain is enough to invoke crying…then you might see it.
I pray every single day that medical science finds a cure and this disease can be eradicated. It is days like today that it even hurts to breathe. Even my skin hurts just laying still. I pray that this weather passes…but I have seen the forecast and it is not in the cards this weekend. So, I will get my big girl panties on and do my best to make it through. I think warmer dry weather is in the forecast. I sure hope it gets here fast. I have a doctor appointment this coming week and I am anxious and nervous of how everything is with my system. Pray…pray…pray.