First infusion

My first infusion was a week ago. It went way better then I expected it to. I go into the office and was still not impressed with the nurse maybe she was having a off day who knows. She could not find a vein. She didn't try to stick me I think she was scared to. She ended up calling seine from across the street at a endoscopy center to come and stick me. The lady that came was so nice and had a great personality. She got me in ine stick and I was thrilled. Once I was set up she would come in ever 30 mins and take my blood pressure and temp. It was freezing in there and they had no blankets. My mom went out to a store close by and ended up buying me one... She's the best. Another thing that annoyed me was no wifi. I would have been able to watch netflix while I was there. Ohh well. For the most part it was horiable. I was extremely tired that afternoon and came home and slept. The day after I was still very tired. I didn't not feel good for that day and then on Saturday. I was nauseated and got sick once. I honestly don't think it was a side effect from the infusion but a mix of the fact I ate way to much ( my eyes were bigger then my stomach) and just the UC in general. Sunday I felt decent. Ianaged all weekend not to take a nap. I wanted to try and get back on track. By Tuesday I felt almost like my old self. A well later and I'm still feeling good. I'm not having bad stomach pains and cramps like I was. I still have some but very mimnial. I also am not as tired as I was. I no longer go into the bathroom at work and close my eyes for a couple minutes. Hopefully next week will go just as well. 

'Twas the night before

My infusion.... I'm really praying all goes well and I'm not irritated with the people. My mom tends to remind me that everyone gets on my nerves. More so when it's a procedure or something related. I'm just hoping I won't have the urge to throat punch someone. They get three sticks and then they are out. Fingers crossed all goes well. 

Today had been one week since remicade was descided. This week has by far been one of the worse with joint pain and tiredness. No so much with stomach issues but I've been taking it super easy. Today I wanted rice and applesauce so I went on my lunch to the store. Well I was hungry and we all know how that goes... Never go shopping hungry that's like a major rule. Luckily today I had two things on my side, one not much sounds appetizing and two I'm broke. Not like broke but broke broke this is pay week so those are always tight. ( I even had to pull out the chuckie cheese wallet that my son keeps some ones in.... Don't judge I know y'all do the same thing. Anywho I bought rice, applesauce, kings Hawaiian rolls, and pudding. The last two were splurges. The pudding was no thanks to me later if you get what Mean. 

There is my beauty of. Lunch. I never got to the apple sauce it's actually to much food but whatever it look good and were things I think I can handle. Now I'm just thinking about a big ol steak! Hopefully I can get that set up in the new future. With my no appitiate, nausea and not sure what to eat to keep it all good I  figured blands were the best. On a good note with all this I've lost 8lbs!

Ready to go

Everything was set up today. I'm having it done at a office. I'm nervous that there is only one nurse and that I'm a hars stick. 

I know I'm not the greatest patient so I'm hoping it was more me then the nurse I've spoke to. I guess we will see Thursday morning. 

For lunch I wanted fried pickles not the smartest decision but they were good. For dinner was a little bit of chicken and of course rice. 

Tomorrow's to do list is drink plenty of water so my veins are nice and plump. 

Frustrations

I'm sure today will be one of many. When I was at the GI on Wednesday the Dr. Explained that they have a RN that handles the whole remicade process from pre auth to infusion. She also told me she would explain everything to me and let me know if it would be cheaper to do it in office or at a infusion center. I left that day expecting a phone call at least by the next morning as I was told the Dr. Marked it as urgent. Thursday mid morning I had not heard anything but also had questions I was ready to have answered so I gave her a call. They put me right through and I spoke to her. She said she was pretty sure my insurance didn't require pre auth. She would check on everything and probably have an answer for me that afternoon. Friday I did not call as for I was sick and wanted to give her time. Today when I called at 11 nothing still has been done for it. She was very short and informed me that she would work on ot this afternoon. At 4:30 she calls me and gives me the price and tells me a little about a program (remi start) that will cover a big chunk of the cost. If I'm approved then I would pay $100 each infusion and if not it would be $650! If I was approved I would not be able to use my flex spending card for medical uses. I have money put in there every year to be able to use it! One infusion with out being approved would wipe the rest of the balance. With all this today I have decided to go to the infusion center. Not only am I completely irritated with the way she has handled things, I also thing because I'm suck a hard stick I would be better off there. So tomorrow will be another day on the phone trying to get it all arranged. 

My meals for the last two days have consisted of rice and pasta salad. I'm ready to start feeling like my self again. I have a hard time remembering what it is even like because it has been so long. 

Time to try something new

I always knew I'd get to a point that we needed to move on to something else. I always pushed it into the back of my head, one day I always thought. The day has come. No longer are pills working and I will be starting a form of infusions  soon, basically it's chemo it kills all the good and the bad in your body. 

I am 31 years old with Ulcertive coloitis. I was diagnosed at the age of 15. Ulcertive coloitis is a autoimmune diseases. Basically your own body is fighting it self and there is no cure. 

I have decided to write this blog as a therphy for my self, to document my on going treatments, to inform other people and possibly help anyone else going through the same thing.