Awareness needed

The ALS ice bucket challenge is going around, to raise awareness and money in the fight against ALS. I strongly believe something needs to happen to raise awarness got Chrons and UC. I don't know what that but I feel like I need to do my part. 

I have lived with UC for the past 16 years but I feel like within the past couple months I'm really stating to embrace it and learn more. The support group on Facebook lets me see how many people are going through the same thing I am. Those are the people that truly understand. I don't think anyone really can unless they have been in your shoes. The past couple months have been the worst for me as far as pains, aches and feeling blah in a while. I don't even know where to begin. There are many days I think laying in the bed all day sounds perfect. I've got unfinished projects left and right, my yard is a hot mess with weeds everywhere and let's not mention my house. The things I use to do I'm not able to. I want to feel normal again but the sad thing is I don't know what that feels like because it has been so long. 

The latest about my infusions.: I've had numbness and tingling in my arm and possibly leg. It is a side of remicade so the infusion that was supposed to be next week and been postponed until I are a neurologist. I'm hoping tomorrow to know the date for that. I also have a appointment with the Cleveland clinic. I would like a second opinion and to start thinking about surgery. 

Second infusion

My second infusion was a week ago. This time my appointment was at 1pm. I ended up working until 1230, stopped and got some lunch and then went to the doctors office. The lady again was not able to find a good vein and didn't try to stick me. She called the first one again from another center and she was able to get me on one stick and in the same vein as before. I took Tylenol and claretin before the infusion started. When it started I got this weird feeling like I was just weak all over. I had it the first time around also. I was tired again and with no wifi there I was not even able to read on my iPad. So After checking Facebook, Pinterest, email and texting people back I decided to doze off and on. It wasn't a good nap as the nurse comes in every 30 mins to take vitals. I was done right at 4 I went to pick up my son and headed home. By the time we got home it was about 5. Too late for a nap so I just took it easy the rest of the night. The next day I did stay at home from work. I managed not to nap that day either but did hardly anything at all. 

Since then I havnt got the burst of energy and felt like I'm feeling really good like I did after the first one. I think it's working my bowels are formed and no mucus or blood. I'm still so tired and no energy for anything. I'm not sure at what point that will get better if ever. My joints also hurt after the first dose I was releaved of the pain for a couple days. 

I really just want to be better I'm tired of having no energy and having to strategically plan my day. I don't even know what it's like to not be tired anymore. I can't remember the last time I wasn't. It's been years and years. 

It does not help that today I hate lunch and feel very nausea.