Cleveland Clinic

Last Wednesday we left for the Cleveland Clinic. My sister and I both had colonoscopies scheduled and a Dr. Apt. Wednesday night I had my own room and started my prep. My instructions said I didn't have to start until Thursday morning because my scope was for 4pm. I wanted to be extra safe and no doubt I was cleaned out. Luckily for me I drank a clear liquid drink from Starbucks that apparently had Splenda in it and that started the flood gates. 

Thursday morning I drank more of the prep until I was positive without a doubt I was cleaned. Thank god that happened at the same point I was about to throw it all back up. We go to the hospital and of course the Dr. Was behind. I did not have it done until about 445 or so. That night I ate at the hotel restaurant and boy was that overpriced. 

Friday was my appointment with the Dr.

I got there early and they were able to take me right back. I saw the nurse practitioner first and she went over my history and asked tons of questions. The Dr. Finally came in and he asked more questions. He did tell me that my scope looked good and no signs of active UC. That was great news to hear. He said that the Remicade will help in as few as two infusions and I have had two. His name question why what I have been told about my high blood pressure, I told him it was because of my weight. He seems to think it is something to do with my kidneys. My nose bleeds, fatigue, and sleep problems are all signs of kidney issues. He ordered a bunch of lab work and a kidney ultrasound. I was not able to have it done while I was up there but I plan on going back in two weeks. 

Too long

It's been about two months since my last post. Entirely too long. I'm writting as I'm sitting in a hotel room with 7 other people 5 of them kids. It's a little hectic but as they sit and draw pictures I'm actually bored. 

Being bored didn't last long at all because here it is 4 days later. So here is a quick update. 

Remicaide was put on hold. I went to the neuro dr and it was determined I had carpel tunnel in my right wrist.

I guess that's better then what ever else it could be. After that was determined I did my 3rd remicaide infusion. This time I wasn't nearly as tired as the first time and even went to work the next day. I defiantly think it has helped with the symptoms, as far as nausea, diarrhea and pain in my stomach. I am still tired and not a lot of energy. My joint paint has even gotten better to a extent. 

I did go and try acupuncture, for the pain and after two times I really think I could tell a difference. I havnt gone back bc it's so expensive. I'm hoping after the first of the year I can. 

Next week I head to Cleveland Clinic for my second opinion. I had made this appointment when I was at my worst and felt like I needed to move forward with a second opinion and think about surgery. I am not feeling that desperate anymore but I'm keeping the appointment. 

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. 

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.