Month: July 2022

I woke up this morning in pain with tears stinging my eyes. I called my Mom to get me out of bed. It’s like that now. She says that I help but I am not sure how much anymore. In 21 years, I can’t get used to waking up in tears but with these feet that seems to be an every day thing.

Tears breached the corners of my eyes before I was out of bed. Now, I am sitting in my wheelchair with my blurry bandaged feet outstretched. I haven’t put my contacts in yet. I have an appointment on Thursday with the optometrist. I think my prescription has gotten a lot worse because I can’t really see even with my contacts in and my glasses with my prism.

I took a pain pill and I am listening to my rosaries on my phone as I drink my breakfast and take my vitamins. I really feel that the struggle is SO real now…

I think that I look younger in medical situations. I’m really not sure why that is but here are two instances that happened before I tell you about what happened today:

Back when I was hospitalized with MS suspicion in 2000, a doctor was taking me to get tests done. He was pushing me in a wheelchair while we all piled in. The doctor who stood by the Control panel looked at the doctor pushing my wheelchair and asked, “6!” And the doctor pushing my chair corrected them and said, “No, 12.”

Here was what was going on, I didn’t understand it until the doctor who asked the question clarified. I can’t remember the numbers they said for real but the doctor pushing my chair got us into the elevator and the doctor at the buttons asked for the pediatric ward. He asked that because after he asked the floor number and the doctor pushing me corrected him, he said, “She’s not in peds?” Thinking that I was young enough to be a patient in the pediatric ward. I was 18 then.

Another time, I had to go to the ER for a chest x-ray because I had just moved into our first apartment and I was super stressed out! I was in a hospital gown and I was wearing my chucks.
I needed to have a chest x-ray done.

The nurse explained that I needed to stand in front of the x-ray machine against the wall. I was still able to walk back then because I was only 23 so I stood in front of the x-ray machine where I was told. As she was getting the films ready, she whispered into my ear, “You have cherries on your underwear!”

I was extremely taken aback by that remark because I was 23 years old!
commenting on the pattern on your underwear print is NOT something adults talk about with COMPLETE strangers! It was at that moment when I realized that I must look younger when I am wearing a hospital gown. I think that I just weekly smiled at her and agreed.

Becky, the new wound care nurse who came over today because Sonya had a day off. I was already out of bed and seated in my chair in the living room by the time she came. My Mom was scurrying around the house. Becky put her hand on my left shoulder and said, “How old are you, honey?”

I looked at her and told her that I was 40. We were both wearing masks but I could tell her mouth was agape! She told me that I looked like I was 16! Well, that’s a compliment I will NEVER forget as long as I live!

My Mom came back into the living room and we both laughed about me looking like I was 16. I think it was the glasses and the mask. I think I look younger in medical situations! I told her about the cherries on my underwear incident so I must look younger than I am obviously.

She said that my wounds look good but she opted to retape my right leg because it is looking angry on the edges. Sonya will be here on Friday to change them:

I remember that I laughed the night before we went to see Jen in the infectious disease clinic because I thought that it looked like I was wearing legwarmers! I was trying to come up with a good 80s song to sing but I couldn’t.

Yesterday, as we were getting ready to go to the infectious disease appointment, I recounted a story that I have told my Mom probably 18 or 19 years ago. We were talking about all of the many doctors I have seen in many different specialties over the years! I told her about my favorite doctor!

So, this was about 18 or 19 years ago. In fact, when I think about it, I had already had Sean. So it was almost 21 years ago. So I was referred to this specialty because I was having a problem (as many people do with MS) And I was told to see this doctor. He was highly regarded. Head of the department or something.

I will never forget that I sat in the exam room for over an hour and 40 minutes for this doctor. I was incensed! But I was having a problem so I needed to talk to him. When he finally open the door, he walked in slowly and sat in the patient chair right next to me and NOTICED in the little doctor stool.

I looked at him expectantly and he just looked at me with kind of a pain look on his face and he just said, ”MS sucks.” At that exact moment, my heart Melton at all was forgiven. I could wait forever to hear someone be understanding of my situation. But I did not know back then how much it was actually going to suck because it really does!!!

So, my infectious disease appointment was with a nurse practitioner named Jennifer. I reminded my Mim when I told her about the appointment Of what my professor said at the first day of class one time. Thinking about it now, I would say there was about 30 desks in that class and there may have been 20, maybe 25 people enrolled in that class.

I had head that professor before so I knew the protocol of us introducing ourselves and our major and something about us or something like that. I think I was the last person to introduce myself or at least the last ‘Jennifer’ to do so. There were five of us in that class and when we were all finished introducing ourselves, the professor looked at the class and exclaimed, “The Jennifers” are in college?!” I remember that we all laughed because my MOm had told me for my whole life that Jennifer was the most popular name when I was born.

I told my Mom that it looks like now that ‘the Jennifers’ have careers! Are used to have one too…

We hit it off immediately with my nurse practitioner Jen! She dressed my left foot but explained that my right foot is healed and just needs to be covered with scars until it completely closes up. Here are my feet now:

That’s the same view from the I had from 21 years ago with that really call Dr. oh I can’t even remember his name but he was tall with big shoulders and I think he may have had ‘wrestling ears.’ But I know that Sean will be jealous when I say that that was the first time I wore pants In a long time! Those pants for my, “Incredible Hulk” pants that my Mom had to cut when we were at ATI to access my knee. I thought we were just going to throw them away after they were cut but that was about five years ago and we have used them a lot sense! My brother, Dave, loved that show!

So now, I have talked about seeing 1 million different doctors and meeting my wound care nurse practitioner, I was exposed to something that I had no idea about for the past 21 years! I laughed when I saw the waiting room sign:

I wasn’t sure if it was a ‘pay by the letter’ sign or just ‘use the initials so it doesn’t sound as horrible!’ ?! But then we met her and she actively listened to everything we said and had all kinds of suggestions and sent us home with a big bag full of supplies!:

That was the second shipment from the government. The first one was sent to my house, here is the first one:

in addition, they are sending nurses out both on Wednesday and on Friday to change the dressing. My Mom has since tapped out because she is overwhelmed but I told her she handled my feet when they were at their worst like a champ!

Jen even called me this morning before I had a weekend and left a message regarding wedges that I need for sleeping. I am completely NOT used to things happening so quickly! I am completely booked for Rothe and I am used to asking questions and doctors not having the answers and guessing about medication and all of that red tape!!! This is so refreshing!!!