March Part 5 – You Don’t Get It Unless You Get It


During my two days off, I decided to do a bit of juicing, and incorporated aloe juice in my regimen, as it seems to help my stomach tremendously. The Flagyl and Omnicef have not been my friend this round, and I have been going to bed with a lot of stomach pain. By taking aloe juice before bedtime, all that pain goes away and my stomach seems to cooperate much better. Yay!

Yesterday was the start of the second week of my protocol. I kind of like that I started my treatment early this time, even though it was because I was falling apart again, but it really worked out perfectly as Sundays usually aren’t hard work days for me, and I happened to have yesterday off, so if treatment hit me like a ton of bricks, I would be home and not have to worry about getting anything done.

Having some small miracle, okay maybe a big one, I handled the first day of week two pretty well. I took it easy for a bit in the morning, had a cup of coffee, and looked around my living room. My burgundy curtains had a tinge of grey to them, covered in dust, and the corners of the walls were adorned with cobwebs. Lovely.

My plans were made for the day. I was determined to start spring cleaning. I waited for the one hour “bomb”, the time frame I have until I fall apart after starting my antibiotics to hit me, and I was still feeling alright. Maybe it was because was busy and had no time to focus on how I was feeling, maybe things are slowly starting to fall into place with other issues that are now being addressed, or maybe it is because I am falling out of this rut that I have been in and treatment is finally becoming more effective. Either way, I will take it.

I tackled a lot. I took all my curtains down, washed and dried them, washed all my windows, dusted, swept, vacuumed, then decided to start cleaning my bedroom a bit and cleaned my bathtub. Holy moly.

Holy moly, that is a lot for me to do, and on an antibiotic day nonetheless. Dave ended up having to take over and put the curtains back up, and cook dinner, but I was kind of feeling like a superhero. I’ll tell ya, with all that cleaning in my living room, my “dungeon” where I spend most of my time looks a whole lot brighter!

The rest of the night I knew I was running on negative spoons, as I lost all sensation in my feet and right leg. I was foggy, and kept repeating things to Dave, or after just about anything he said, I had to ask him.. “what?” I was loopy. I kicked ass earlier in the day though, so that is just the price I had to pay. It was worth it.

I am still waiting to hear about the cardiologist, and waiting on my prescription to be called into the pharmacy for the circulation in my hands and feet. I am getting a little antsy about the cardiologist appointment and what they will want to do for testing. My concern is wanting to take a shower with a monitor on since it is believed that my body might be having an autonomic response that is affecting my heart, and the test will be missing out on all that if I am not “plugged in” because the holter monitor is not waterproof, and there is no way being passed out and unconscious that I would be able to hook myself up. Hmmm…. I have a lot of points to bring up when I get a set date for my appointment.

Today was a dub day at work. I think with all the work I did yesterday, I am still paying for it. Or herxing. I am not too sure. All I know is that I am beyond exhausted. It will be another 5:00 on the dot nap evening for me. I am hoping that the rest of the week stays steady, as this should be good news to Dr J’s ears that I have had two better rounds, even though I have certainly had my bouts of really tough times, one being Flagyl day. Blechhh. Flagyl.

Now I will explain the title of my entry of the day. I put some thought into whether or not I should write about it, and you know what I decided? It is important. This is one of the “uglies”, a hard life lesson, and I feel like a lot of you can relate. If anyone involved happens to read it, good riddance. This is my life, my story, my experiences with this disease, and everyone should know exactly what one can go through living with a chronic illness.

A week or two ago, a friend and I wanted to gather up some friends to go to a new restaurant, so we decided to get the ball rolling to make plans, so reservations could be set up. After discussing with everyone, the following week seemed like a better option, as a lot of us already had plans set for the weekend.

Great! This upcoming weekend. That works for everyone, so it sounds like it is a “go”. Before I know it, the plans change from trying out this new restaurant, to going dancing.

I obviously cannot go dancing. Between the loud music, any sort of lights, to well… even being able to have any sort of physical strength to even try to dance is just out of the question.

My first thought was that my friends were going to go dancing AFTER dinner. Which I really wouldn’t care, Dave and I would just head home. After conversations, it was decided that everyone was going to go dancing nearly an hour and a half away.

I guess that kicked me to the curb. I was really hurt. Out of everyone involved, no one thought twice about me not being able to go, one who was initially a part of going out to dinner, something that I could actually participate in. Not one person.

If anyone had any consideration, they could have gone to this new restaurant, which would have included me, and likely would have been able to walk across the street or drive two minutes down the road to go dancing. Or go out to dinner, and drive 15 minutes away where there are other clubs to go dancing. It wouldn’t have been putting anyone out of their way to do something like this. It had to be in a fashion that I was completely crossed out.

Do I want people to cater to me? Absolutely not. I just can’t believe that no one cared or thought about me. If it was the initial plans for everyone was to go dancing then I would not have been upset. But to go from something that I could be included, plans I even wanted to start to get put together, to basically get disinvited to really sucks.

It was suggested to me to bring up and push for the other options, of going where we had plans to go, then them going dancing afterward, but out of principal, I just can’t do that. There was zero consideration from anyone, even those I really thought would have (another disappointment), so why would I want to try?

I am not going to go try to change everyone’s plans because they were rude. That is also a very awkward thing if people actually did wake up and realize that what they did was hurtful and wanted to incorporate me so they change them, and I know they changed them for me as an afterthought… that I had to bring up. I just can’t.  I will wait for when people actually want to include me. The first time around.

This is one of those tough lessons you learn when you have a debilitating chronic illness. Do I think that there was a huge malicious intent against me? No, I really don’t. But others really have no idea sometimes.

When you don’t have much to look forward to, you REALLY look forward to those little things, and mine was a night out with friends. It brought me down even further than I already feel a lot of the times, discouraged, depressed, and downright angry.

Not only was I angry that I was left out and that it wasn’t a thought that I wouldn’t be able to join with the changing of the plans, I was just all around angry. I love to dance. I would have loved to have joined. I wish my body would heal so I could go back to a normal life and do these sorts of things.  I was angry at myself for not being able to go when I so badly wanted to. I was angry that I am still sick.

I have been trying to keep on a happy face even though this situation has really put me down. I was heartbroken when everyone changed their plans that no longer included me, but it has still eaten me up inside. I know I will feel better once that day has passed, but until then, I know I will be bummed out. Like I said, I never want to be catered to or felt sorry for.

I only hope that no one has to go thru the same thing, feeling like you are missing out on life, or people don’t care that you thought once did, or have a feeling of pure rejection. I am sad to know that many of you going through something similar to what I am, you probably very well know how this all feels. And I am so sorry for that. All I can say is stay strong, and know that most people probably aren’t trying to be cruel, they just plain don’t get it.

5 thoughts on “March Part 5 – You Don’t Get It Unless You Get It

  1. I’m sorry. Life is passing us all by….i feel like that daily. I rested all weekend and was excited at the opportunity to go see my nephew play ball today. It was “too wet” so they canceled the game – no one thought to call me. i went by to see him but he didn’t have time…blah blah…..i cried all day.

    Hugs! be thankful you have Dave and your family. No I am not jealous – we each have our burdens. Mine is that my family thinks i no longer count.

  2. Unfortunately i think those of us with chronic illness have gone through being left out. I was the captain of ragnar relay team before i was diagnosed. Then i was and with the teams blessing decided to stay because everyone would make the modifications i needed. When it was time to actually make them, people wouldnt put their money where there mouth was so to speak. I ended up not being able to go after putting a tone of work in it. That was at the beginning of treatment when i was just doing herbals so i knew it would be my onky chance to do something like that for a long time. Thats just one example. This disease can be so lonely. Hugs

  3. I’m sorry you had to feel that dismissed, forgotten feeling, and the disappointment! I know the disappointment all too well, how we look forward to things others don’t think twice about. Don’t let those hurt feelings detract from your healing – be empowered and inspired by it! Hang in there.

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