August Part 3 – I Want to Ride My Bicycle, I Want to Ride My Bike

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I started off the week rather tough. I think sometimes the Coartem takes its time to really kick in. From what I understand, it has a relatively long life in your system. The I had torrential night sweats, and a sumo wrestler is sitting on my chest.

I felt like someone invisible was punching me in the stomach, and was in a lot of pain. There could be several causes, from bacterias, gastritis, one of the nasty coinfections in my body. I was once tested for c diff because of how much time I am in the bathroom, and had a negative test. I have heard from people who have had c diff, that you know. It isn’t one of those questionable things. You just plain know.

Right now, it is a mystery, since I am not on treatment, and have been eating very healthy. I am just not going to worry about it. If you worry about every little thing dealing with this illness, you will make yourself go crazy. It is all just part of the fun I suppose. If it gets worse, then I will worry. I will just rough it out for the time being.

After all of this, I just wanted to soak up some sun. It wasn’t too hot or humid, as I do terrible when it is really hot out, and lazily just hung out in the backyard, watching my dogs play in my bra. Who needs a swim suit? I just didn’t feel like changing. Whatever.

I had several tics this week, and totally out of it. I pushed through it as much as I could, and was able to do a little bit of cleaning before my usual evening snooze fest. Sweeping, vacuuming, cleaning under the bed which was horrifying.. there was enough hair to make another Cooper and Chance. On days like that, not feeling well, I at least have a sense of accomplishment.

That day I slept from around 2:30 until 8, and then called it an early night. My body needs to rest. Sleep is definitely a big part in healing.

I had my massage therapy session with Gayle. This week I have had no circulation, as she could sense a large temperature change from my calves down, and my feet were freezing cold and blue. My feet hurt really bad, I think it is a Bartonella flair up. All my connective tissue was really inflamed. I am not sure why, as I hadn’t been extremely mobile, other than trying to get some housework done. Overdoing it is when I tend to have a lot of issues, and I can’t say that I had at all.

I did another round of juicing this week. I have been opting for lots of green juices, and trying to get my alkalinity levels more neutralized. When your body becomes acidic, it can cause a lot of issues and is important to help your immune system function better and help your body reach better health. I get hungry toward the end of the day, but I know it is worth it in the end.

The other day, my recumbent bicycle came in! I want to do everything I can to get rid of my POTS symptoms. Dave put it together for me, and I hopped right on and gave it a go! *Insert “Eye of the Tiger” music here! I was really excited about this:
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My initial goal for my recumbent bike was to do 5 minutes twice a day, morning and night (I didn’t want to do too much to start), but then realized I am really dizzy and tend to black out in the mornings with very low blood pressure and a high heart rate. I decided it was best to keep it as a nighttime thing, and it would possibly be a good idea as I do not move from the couch for hours and hours, until it is time to transfer myself from the couch to bed. After nap time I think is best.

After my 5 minute goal of exercising, I have been using it for 15 minutes! WOW! That is a really big accomplishment. Go me! I am not going to lie, it has made me pretty sore, even more exhausted, and my symptoms have been flaring a bit more. Either way, I was really happy with myself, and all I can do is hope trying to get some leg muscles and use my legs again, along with my new medication, I will feel and see improvements.

Hmm.. then there is the Bartonella flare I was talking about. Painful feet, especially the soles is a trademark symptom of Bart. For me, I get mental issues, and one of my biggest is rage. I have been yelling out my car at pedestrians and bicyclists all week. “Use a fudging crosswalk!” “Read the fudging sign, it says ride singles you piece of poo! ” Only, I didn’t say fudging or poo. You get the idea.

Although I know I am in a way better frame of mind, I find myself having issues of these sorts every single day. Little bouts of depression being one of them. I am so thankful it has lifted a lot. I think a big part of it is not being able to go where other friends are going, and I know I don’t really get invited to go anywhere when I probably could. I am hurt by a friend who seems to do this a lot to me. Going to get nails done, things like that. I could sit in a chair.

I feel kind of left out with this type of thing now. It is annoying for sure. Jealousy and envy are two things that I do not like. But it is always there at one point or another. I am sure many of you understand this.

I did however get to go to a barbecue with some friends the other day. A barbecue is perfect for me. Sunglasses or nighttime, plenty of room so I don’t get crowded neurological issues. I can sit. Chit chat. Perfect. It was also so good to see people that I have not seen in a long time that live further away, and I miss them a lot.

Yesterday was a sad day for my family. We had to put our dog down of 13 years. I knew it was coming, but it still doesn’t make it any easier. When I got the phone call, I allowed a moment to myself, I needed to just let out my tears by myself, then headed over to my parents. We had a nice little burial for her. It makes me weepy even writing or thinking about it. Losing a dog is like losing a family member to me. She will definitely be missed.
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Today I started Florinef, the prescription my electrophysiologist gave me for POTS treatment. My mouth feels really salty. But I will tell you, so far so good. I went to breakfast, the grocery store with Dave, and then the bank. I even changed my bed! I would have to say, so far so good. Really good.

I wasn’t dizzy and lightheaded at the store, not like the POTS symptoms. I am really light sensitive and make me rather symptomatic, but I can differentiate the two at this point. It’s not my first rodeo.

I had a gynecologist appointment, and had to tell her the sucky truth, that the endometriosis pain is coming back. I am not sure if surgery will be in my future. I hope not. She told me generally two rounds tends to help most patients a lot, but at nearly $3 grand a wack because my insurance won’t cover it, it isn’t in the cards right now to spend that kind of money.

She had spoken to a distributer and got a coupon that we are hoping to get another shot directly from the company, at 10$. Wouldn’t that be amazing? I am not going to get ahead of myself, but it would be nice if I am lucky and things all work out.

This week I finally got my Daraprim, and it was covered by insurance! 20 days was 75$ instead of around a grand. Specialty medication isn’t usually covered, just like my Lupron. What a huge weight lifted.

I have put a lot of thought into this, and made the decision to start my new antibiotic protocol tomorrow. I have had a week and a half off, so I would technically be starting a week early. I want to get these bugs tackled hard, as I once again have an extremely aggressive protocol, then I might try for the very first time to have a 3 week break, as that was an option given to me.

Wish me luck! I never know how these things will go, but this will be a change from my long lasting terrible other protocol, so either way, I will take it. Change is good!

Happy Sunday everyone!

2 thoughts on “August Part 3 – I Want to Ride My Bicycle, I Want to Ride My Bike

  1. I stumbled onto your blog after googling things not to say to someone with a chronic illness. I’m glad I’m not alone in being frustrated. I have cystic fibrosis and I always hear people say, “well my cousin’s neighbor’s girlfriend tried this and it cured them” well good for them, it probably won’t work for me though. And chances are i probably tried it already. I also have autism and i hate it when people say “its all in your head”, obviously they dont know that the majority of autistic people have gastric problems as well. Sometimes i just want to punch people.

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