elsims

April 14, 2019

Birthday Tripping, Pt. 1

I did mention my birthday road trip right before I went last year. Then I was delinquent and never came back with any pictures or talked about it in any way. Smh. Well I went to the doctor the other day, the phlebotomist who had suggested a location to visit, jogged my memory about the trip. We discussed the place and how it touched both of us. She shared an amazing story about what happened to her and it inspired me to share details about my trip.

So my birthday trip was October 29, 2018 to November 4, 2018. My first stops were in the upper peninsula of Michigan. I actually had never went up that way before. The main goal of my trip was to see autumn colors. I am a fall baby and it is my favorite season. The first thing I noticed was the speed limit became 75 mph. I was excited about that at first because less chance of me getting a ticket since I was already going 75+ mph anyway. But the thrill started to go away because it was legal. Lol. Rebel at heart here. Well I discovered that Michigan trees shed their leaves more in the middle of October. Not a lot of colors to see, but I did get some good pics.

My first stop was Mackinac Island. Now I don’t really know what I was expecting but it wasn’t what I thought it was going to be. It was a lot of hotels, I mean a lot. And what was weird is it look like they didn’t set them up to have good views of the water. What is the point of being surrounded by water and not taking advantage of that🤷🏾? I seen the lighthouse and had to make my way there.

Mind you this was in late October and people were still going out on the water in that cold weather. The water was so clear and beautiful.

The reason I went up north was to see the Cross in the Woods Shrine, so I didn’t linger on Mackinac Island for long. The Cross in the Woods had me speechless. It was such a beautiful and serene atmosphere. It felt as if it was separated from everything. There wasn’t any noise from the street. I happened to be the only person there at that time as well.

The cross stands at 55 ft. and weighs 14 tons. The Corpus weighs 7 tons and is 31 ft. long from head to toe.

The cross is located behind a church. There is mass outside a few times a day. The church building also has a gift shop/store. I made it to the cross too late to be able to go inside the gift shop. I was in my anti-social mode so I did not venture into the building at all. Next time I will go in and see what it is like. Sorry I am not able to share insight on the inside.

There was fake candles that you could light in observance of someone. It was required to give a donation to light a candle. It would stay lit for the day. Or you could go inside the gift shop and pay for a longer time period.

Front of the building. This is where you can light a candle.

Now to the story from the phlebotomist. Her name is Becky. She said that as a child she had cancer and her treatments were not going well. It was hard to find a vein to give her the treatments she needed and it cause her to miss treatments. Her father decided to take her to The Cross in the Woods. After visiting the cross, Becky came home and was one of the first people to get a port. A port is installed in the chest for people with bad veins. It allows the doctors/nurses to draw blood and also administer medication. She said after the port was installed she never missed another treatment and was able to beat cancer’s ass. She truly believed that the visit to The Cross in the Woods is what helped her. I believe it as well. That was an awesome testimony.

I love to explore and learn new things and visit new places, but I will definitely return to The Cross in the Woods again. If you like to travel, I recommend for you to visit the cross at least once. It is an experience like none other. Once I stopped back home, I headed south. I made stops in Ohio, Kentucky and Tennessee. I will discuss the rest of my birthday road trip over the next couple of posts. I will also share some amazing pics that I took with my Galaxy Note 8. It has a great camera. Until we meet again, be well and whole.

March 31, 2019September 20, 2020

Me Pt. 3, the MS story

This is the last day of Multiple Sclerosis (MS) Awareness month. I realized that I have not talked about how I knew that I had MS. So here is my story from before I was officially diagnosed to present day.

Driving home from Columbus on a Sunday, I had just taken my manicure licensing exam(I passed). All of a sudden, there was a blur in the center of my right eye. It was so weird. I rubbed my eye, still there. I pulled my glasses off and cleaned them, still there. I ran the wipers across my windshield. Still there. I went to the eye doctor. “There is something wrong with my eye!” His response, “I don’t see anything. It may just be a change in vision due to your age“, (I was 32). That was some bullshit. So that blur right in the center of my eye was still there and it stayed that way for about a month and a half. Until one day it was gone. Ok I don’t know what the hell that was but thank God it’s gone. Fast forward to about 2 months later, my left eye is doing the same exact thing. I went from “I don’t know what the hell it is” to “oh something is really wrong, this is not normal“.

With easy access to the majority of information at your fingertips, I went online searching. My search words were simply “blurred vision”. This yielded the usual conditions, cataracts and glaucoma. I knew I didn’t have either of those conditions. Also, diabetes (nope), stroke (no), migraines (don’t get those) and a brain tumor (GOD I hope not). I was reading about one of these conditions on Wikipedia and I scrolled down to the bottom. At the bottom it had links to other conditions that may cause blurred vision. At the bottom of this particular page I seen multiple sclerosis. Ok, what the hell is that? With that one click onto those two words, my life changed. Words that I had heard before due to Richard Pryor and Montel Williams, but still was not truly aware of what it was.

At the top of the Wikipedia page was a list of symptoms associated with multiple sclerosis. Out of the 10 or so symptoms listed, I had a good 7 of them. Things that I had brushed off as not important, as symptoms related to my other health condition (I have hypothyroidism) and other things that I thought may have just been due to stress, listed here at the top of the page. This weird tremor in my leg is unusual, but it is not bothering me so whatever. I am so fricking tired I keep falling asleep at my desk. Fatigue is one of the top symptoms of hypothyroidism so maybe my levels are really off and I just need to start some medication. Lhermitte’s sign, an electrical sensation that runs down my back when I bend my neck. Ok, I work an office job and my neck and shoulders are tight. This feeling is just from relieving some of that tension from stretching. I had an answer or an excuse to write off all the symptoms I was experiencing. Multiple Sclerosis did not and would not have ever crossed my mind.

I had zero intentions of telling anyone what I had discovered. One, I just read a bunch of information on Wikipedia, I think I should talk to a doctor first. At this point, it would be my own self-diagnosis. Two, why make people worry? If the end result was not MS, but maybe Lyme Disease (has similar symptoms but is curable), I got everybody worked up for no reason. Well, God had different plans. It was the very next day after my discovery. Before I even had the time to process the information and come to terms with the possibility of MS, I received a phone call. It was my mother. She had a dream that I fell down and could not walk. My stepfather and her had to carry me. Then they put me in a wheelchair. Creepy as hell right!?!? Yep. Ok, one other health condition, hypertension. She believed that I could have had a stroke in the dream and that is why I was unable to walk. She goes on to lecture me about the how-to’s of handling a stroke. I allowed her to finish and then I shared my information with her. When I say this was the last person I had intentions of telling. We know how our parents are and she is the straight up typical parent when it comes to me. Worry, pray, worry and pray some more.

So from this point on, I involved the doctors. MRI, lots of blood labs to rule out other possibilities (that’s how I knew Lyme Disease had similar symptoms) and the spinal tap. To the Cleveland Clinic with 2 of my best supporters, Selena and Monica, and I am diagnosed with Relapsing Remitting Multiple Sclerosis. The crazy thing is I have never had a relapse that involved blurred vision in either of my eyes again. Now I do get the floating spots but that’s it. My life with an MS diagnosis is definitely different. But I am thankful because I know that it could be worse. I believe in the power of prayer and I believe because of prayers that I am doing so well. I am grateful for everyone’s prayers, my mom’s, my friends, strangers from the soup kitchen, strangers in general, coworkers and other people who I know.

Even though Multiple Sclerosis Awareness is observed in the month of March, the National MS Society will be holding the walk in Toledo on Sunday, May 19th at the Huntington Center (new location). I am sure they keep pushing it back due to bad weather. I don’t think I have attended a walk where the weather was decent yet. The walk starts at 8 am which I know is pretty early. If you would like to participate, you can sign up at walkms.org/signup. You would look for the Toledo, OH walk and my team name is Ebony’s Avengers. I welcome anyone who would like to join my team. If you have any questions, please email at elsims27@yahoo.com. Until the next post, be well and whole.

March 23, 2019October 8, 2020

Missing Myelin Pt. 2

As I stated in Missing Myelin Part 1, it is Multiple Sclerosis (MS) Awareness Month. Since I don’t talk about my diagnosis much I decided to share a little more. Selma Blair revealed her MS diagnosis in October 2018. We didn’t hear anymore about it until recently when she did an interview. When I say that hit me hard. I cried when I watched the interview. Not just a moist eye, tears streamed down my face unchecked. I was upset and angry for Selma in regards to it taking 6-7 years to even diagnosis her. I was understanding of her relief at finally knowing what was causing her body to betray her. I was also, empathetic to her struggles with functioning in a body that is so different from the one she previously knew. I cried some more when I seen her on the red carpet, shakily walking even with a cane. Touched by the photographers not taking pictures when she had a vulnerable moment and needed to gather herself. It was a lot for me. It was also empowering. I am one of those people who will use a cane as needed, kinda. I probably spend more time walking around looking drunk than ensuring my own safety. I am getting better at using the walking stick, but would not allow it to show up in pictures. Because of Selma, I proudly rocked my walking stick in a picture in the Bahamas.

My walking stick is not pretty, but it is functional. #pjawedding2019

Even though Selma Blair’s story touched my heart, I am still MS prejudice. Most people who have MS probably are so don’t judge me. What I mean by this is I would not like to hang around with people whose Multiple Sclerosis is more advanced than I am at this time. I don’t mind meeting people affected by MS, but multiple interactions would be hard on me. The reason is I would let their MS journey influence my thinking about my own. With an illness that is so unpredictable it is easy to let your thoughts run wild. And I also have an overactive mind and imagination. I know my weaknesses. I am not doing great but I’m not terrible either. And where I am right now may be where I will be in 10, 20, or 30 years. I don’t know. No one knows. So why spend time worried about ending up in someone else’s story? I will not. I will walk my own path.

There are things that I truly miss that I am unable to enjoy any longer. Dancing, any kind. I love music and I have a little rhythm so dancing is expected. I still dance a little, but I feel awkward when I do it. The more complicated dances like hustles and ballroom are not feasible. Going for long walks to clear my mind and look at nature. Hell, just walking without having to think about the movement of lifting your foot up high enough not to trip. And then putting it down so that my foot doesn’t drag. As I started to crochet for the first time in months, I realized that I better do it more. I would hate to be years from now having issues with using my hands and unable to crochet. Wishing I would have made more works of art. Gave away more blankets. Blessed more people with helping them to learn to crochet. This will be the third year that I make a blanket for someone affected by MS. And I want to continue this tradition for as long as I can. I have started to notice the decreased feeling in my fingertips. The weakness when I write for any length of time. This makes me sad, but more resolved to do what I love.

I will not give up the goal of living every day to the best of my ability for that particular day. They are never the same. I am never the same. This sharing is not to seek sympathy and I sure in the hell don’t want anyone’s pity. I just want to share my story in case it helps someone else. It lays me bare and I am still not good with being vulnerable. I know people see me and are curious, but of course don’t want to be rude or intrusive. I don’t mind genuine curiosity, so please feel free to ask. I do mind “poor baby”, “that is terrible” and any form of fake sympathy. I get it. I don’t expect people to understand, but I do expect people to be respectful. I know I can’t relate to someone’s battle with cancer or any other condition not affecting me. I believe that everyone has their own burden to carry in life. Mines just happens to be visible. Lol. No matter what burden you carry in life, make it your mission to be well and whole.