A hell of a week or two.

What a week or two I've had.
The Friday before last I had my remicade appointment.
I have always been treated really good by the NHS in University Hospital but last time that was not the case. It was awful, truly terrible. Ten minutes in I actually vomited and started to shake and have an awful headache. I felt really rough and the nurses didn't seem to bothered. I was getting in a right state and actually at one point wanted to walk out but Mandy calmed me down. Now there was a catalogue of failures by these perticular nurses. The main thing thats important is I had my remicade and made it out alive. (Not before bleeding all over the place). I contacted my IBD nurse through email and she is sorting it all out. She is a hundred percent on my side. Emailing very upset emails is not what I need to be doing when I get back from the treatment!.
   I almost quit. I did not want to go back which I think is understandable. I thought about it and decided...
                                  To carry on with the Remicade. 
As I have said before the other staff have been brilliant, and the remicade is beginning to work a bit more and it's so much better than the prednisolone.

Now on to the second awful thing that I am recovering from.
On Thursday evening my leg felt a bit stiff, I was joking with Mandy about it (I was trying to stretch it by holding on to a tree and pretending to be a ballerina!). We went shopping to Sainsburys and I was limping a bit. By the end of shopping I could hardly walk at all it was so very painful. Well I went to mums to stay the night 'cos Mandy was going out partying. The next day it hurt more but I dealt with it. Then about 6pm my arm started to hurt really bad over the course of the next hour or two I couldn't move both arms at all without being in awful pain and with my leg hurting I was finding it hard to move.

Mandy tried to calm me down, then shit got real.
 "Do you want to go to hospital"
this sorts the real emergencies from the tolerable pains I get. She knows I will never go to the hospital unless it's neccessary.
"Yes I really do"
What followed was 20 minutes of calls to mum and dad and Mandy trying to convince me to let her call an ambulance.
As far as I am concerned ambulances are for people who are gonna die if they don't get help. I couldn't move my arms and needed help walking but I could do it.

I went to A&E with Mandy. We saw a note saying we must immediately tell the nurse at the check in desk if I am immunosupressed (which I am due to the remicade). We waited for an hour until I saw the triage nurse and she took my temperature (High) Remarked on how good my blood pressure was and checked my pulse. It was so hard to explain all the meds and stuff I had been on. I also had to explain when I had my infusions and how far apart which is tricky. It was about 30 minutes before I was taken in to a kinda ward. I had my temperature checked again and my blood pressure. I had to do a urine test. Then fill 3 vials of blood in a blood test.
My veins are not good when it comes to blood tests. The nurse said this was because of all the injections and stuff I have. Anyway it took 3 painful tries and the blood just trickled in to the tubes so it took ages.
So after sitting there for a while it was comfirmed I had a Urinary tract infection.

Okay....So how the hell did that explain the fact that my bloomin' arms couldn't even be brushed without actually causing me to scream. Well because my immune system is so low the normal aches and pains that come with an infection go absolutely wild. I got given some antibiotics and we had to wait while she went through what pain medication I was allowed on with Remicade. Paracetemols. That was it. So we went home with the directions that if in two days I didn't feel better I had to go straight to Coventry hospital as it would be very seriouse.
          We came home and the last few days have been hell. I couldn't sit up by myself. I couldn't go to the toilet by myself. Mandy even had to feed me! I was in so much pain. Three in the morning Mandy would run me baths and help me get in just to get a tiny bit of relief. The dog was very confused about it and has spent the whole time looking at Mandy with his head cocked as if to say "What the heck did you do!" It kept me laughing.

Now I am happy to say the nightmare of that infection is nearly over. My arms are back to their old self. I can actually do things!! But I do feel a bit traumatized. Not being able to move was just horrific. How can an infection take hold so quickly.

Damn Remicade You Scary.

Goodbye Immunosupressants!!! -Waves-

 My ulcerative colitis was doing much better which was great. Only I couldn't enjoy it because I was feeling so sooo sick. I was sleeping holding a bucket in case I was sick. I couldn't eat much at all. Any spice whatsoever made me so nauseous. I was sleeping all day just to get through.
So I saw my IBD nurse last week with Dad. (There was a 2 hour delay, dad was not pleased. I told all the nurses to ignore him because he was being a grump lol). I mentioned that I was feeling sick and asked for a pill or something to make the sickness less. She went and got my consultant, The wonderful Dr Darlow. He was immediately concerned that I was having a bad reaction to the meds and asked a few questions. I told him I could deal with feeling sick if it meant that the colitis is not around any more. He said no that wouldn't work, because he originally wanted to keep me on the mercaptopurine for life and increase the dose. He was very sweet and told me that it wasn't my fault because I kept apologizing haha.
   So I left the consultant with instructions to stop the immunosuppressants for a few days to see if the sickness stopped. I asked what would happen if I was better and he told me I will have to go on humira or remicade.

Humira Injections.

Remicade bag

Remicade Infusions given every 6-8 weeks in 2-4 hr sessions.

I then had a blood test. Unfortunately once again they couldn't find my vein and after a failed attempt another nurse came and had a poke around. They eventually got all the blood they need (3 tubes) halfway down my arm which was strange.

Not impressed lol

So around the third day off of the mercaptopurine I felt so much better. I even put the bucket away!. Yay.

So it has been a week and yesterday I get a phone call from my consultants (Dr Darlow) assistant. Dr Darlow wanted me to not take any of my immunosuppressants at all. When I said that I stopped them already, she just said it's very very important and I will never again go on them and told me to get rid of them. I now have an appointment in December to discuss what medication I will go on next.

The problem I have right now is I am not on UC medication at all except from asacol which is not enough. I can feel myself getting sicker everyday which kind of sucks. But hey ho. Soon I will be on a new medication adventure.

Mental health wise...I have been feeling a bit down and strange. I went to see a doctor about it but couldn't get my GP. We got sidetracked and I got a flu jab. (Because at the time I was still on the mercaptopurine and that lowered my whole immune system) Anyways he gave me a pamphlet of people to call and basically kind of hinted that it's to be expected with my OCD and anxiety disorder.
I went and saw my GP last week and she was so sweet and understanding. I have an appointment in two weeks with psychiatrist. 

Also my sister now has a carer support worker that helps her deal with me lol. Her name is Vicky and I got to meet her and she is so great. Already we have learnt a lot and it's nice that Mandy has someone professional to talk to.

I also have to say I am so incredibly lucky to have the best Sister, Mum and Dad and step-dad in the world ever. Mum makes a fuss of me and constantly makes me laugh and cheers me up. Mum and John has me and Mandy over to theirs for meals and to watch their amazing TV. Dad is constantly there on the phone and when he comes up to ours he runs us here there and everywhere. He took us to wolverhampton to see Incubus (freaking amazing) and waited outside the venue for the whole two hours to take us back and he didn't even complain about me and Mandy singing Incubus songs all the way home lol.

Update. My secret and Stigma.

Good evening. It's that time again.

So today I had my consultant appointment at the lovely St Cross hospital. My blood tests have come back and they are great. Liver function is normal and my white blood cell count was good. It's also showing that there is nearly no inflammation. I am a happy little Jo about that. So my immunosuppressants have been doubled. The doctor and nurse were very sympathetic about how hard it is to come down of the steroids. I was all bad ass and told them that no matter how I felt I am going to come down week by week until the end of the course. I mean it. I am determined. Yeahh rock on. So I had another blood test (still on 1 blood test a week).

Then I had to get home and get an appointment with my GP for my depression meds and diazapam. Now I know that I shouldn't tell people that I am on these types of medication. I am not stupid and I know there is a stigma that comes with it. There shouldn't be. I saw a problem and I was brave enough to get help. It's perfectly logical. I was even on anti psychotics for a while. See thats my secret and now it's out! It helped deal with the side effects of the Steroids and helped my OCD a lot. Right now I am on Citralapram and the odd diazapam. I am successfully dealing with housework, the finances having an illness for over 10 years. Being on lots of other medication, and the anxiety and thoughts that come with Obsessive Compulsive Disorder. I even go out now.I have to use a lot of will power and I lean on my sister and my parents a lot. So if the citralapram and diazapam means I get a little bit more help, I don't see how people can be against it.

I'm not Crazy I swear Lol

Now if people want to laugh at me and call me crazy or not want to associate with me because of my mental health issues...so be it. I'm not angry. Actually I think it's pretty cute. They are naive to these issues and it's kind of nice in a way that people can keep that innocence. They obviously haven't dealt with any of the issues me and many others like me have dealt with.
I just hope if they are going to think like they do, that they don't have issues in the future because they would feel awful about what they did wouldn't they? :-)

An update.

Good evening. I thought It was about time for a little update on how things are going whilst the sisters out with her boyfriend.

I went to a bootsale today. Huge achievement! I kept calm. I gave in to a compulsion though. It's actually an interesting example of how ocd can make ya feel. Me and mandy were walking back to the car and mum was walking back to the car from a different direction. I get this thought. If I get there before her something bad will happen. Stupidly my heart starts beating faster I feel the panic rise. My face gets hot. In a second I suddenly feel like If I don't time this right someone I love will die today, it'll be my fault. Rationally that makes no sense but it's all my mind can think. So I had to slow down and match the speed of mum walking. Making sure I get there at the same time. It's So stupid. Lol.

I'm starting to taper down of the pred by 5mg every week now. Whenever I'm on the pred a lot of strange things happen to my body and mind. It's well documented that this drug can send you totally crazy by the nickname 'Hell drug'. I'm feeling a bit emotional. I cried at the awkward family photos book yesterday, it seemed so beautiful. lol. But the most worrying is the rage. Oooh the rage. It can be something small but I want to just smash absolutely everything. I get so hateful and before I know it I'm like the freaking tasmanian devil running around all angry you could throw any WWE wrestler at me and I will bring them down!. I've cried in to my sisters arms in complete frustration at it.  It just consumes you. The thing is I am not an angry person at all so it's so out of character. I just have to keep reminding myself that it's chemicals. Just chemicals.

I'm pretty hungry all the time aswell and lastly in the moan fest against pred my faaace. Bloated moon face is back. Everytime I see myself in a reflection I make frog noises. Mandy tells me not to but y'know it makes me laugh.

She made me feel better about myself but dyeing my hair red. I learnt I look awful ginger.  But nice red.

So yeah. I am taking all my medication and I can honestly say that. I feel really sick a lot, and the cramps in my stomach can get pretty bad. I'm still having to run to the loo more times than I should whilst being on all the medication. I have to email my IBD nurse about it but I don't wanna bother her.
The asacol has made me bruise a lot. Nasty bruises, I'm thinking of getting some cover up for my legs so that on holiday my legs won't look all bruised.

My sister has hurt her foot which sucks. She hobbles around the place now. She's on anti-inflammatories. She's not working tommorrow and probably not monday, then she has to go back tuesday. I just hope she doesn't damage it more.

So yeah... all in all I am feeling pretty happy. Doing drawing again which is good. Tattoo fund is over £70. Now I need to think of what tattoo I want.  I'm keeping positive.

Currently ejoying these boxsets. 

Corey taylor and back to Horley

I went to Corey Taylor in Birmingham. It was pretty good but of course my UC and OCD made it a little awkward. The thing I have learnt though is to not dwell on the bad bits. In the interest of honesty thou I will dwell a little. It was only as we got near the venue I suddenly got panicky and needed the loo. My dad took me and Mandy and her boyfriend because he is a sweetheart and knows I would never go if I didn't have him there in case anything goes wrong (panic attack or an accident). I always panic when getting near the venue. Everytime. The tears. Once or twice before I've even jumped from the car in search of a loo. Thats the desperation of it.
Anyways we got there and I went in a pub used the loo and we joined the line. IT TOOK FOREVER. I was in tears. Mandy and her boyfriend kept calming me down. When you think you're gonna have an accident it's the worse and when you don't know how long till you can get to a loo, urgh. Then you're crying an panicking and people are looking. So the anxiety is just unbearable. BUUUUUUT.....I did it. I made the line. I got in the venue. I enjoyed the concert. I stood with everyone. Made it home.

Another event that happened is we went to Horley where we used to live and went to school. We haven't been there in 6 or 7 years so it was a pretty strange experience. I felt awkward because I am ashamed that I still haven't got the illness under control and I am ashamed that I don't have a job because of the illness. I know it's not my fault but most times I feel like I am doing worse than I was when I was diagnosed. We had arranged to meet up with a few people and I'm pleased to report they were all understanding and nice. It was good. I also found a lot more of my confidence that I had lost over the last few years.

Me and Dad. 

So Medication update-. I'm now on prednisolone again (grrrr) and I'm on autoimmune drugs, I have blood tests every week which is annoying as I have to get a cab there. I was put back on the asacol (I stopped taking it accidently woops). Whilst on the trip my back and what I presume is my kidneys hurt like hell. Throbbing pain. I was worried but after a few days it was better. I have bruises everywhere! I think it's the asacol. I'm still on my depression meds which are working good and I have diazapam for when I get upset.

I'm feeling angry again. But I just need to stay chilled. I am concerned that I my tummy is still playing me up even on the pred but I really don't want to go back to the hospital so quick so I will give it a week or two before I get in touch with my IBD nurse, Sonia.

Mandy is going to die my hair bright red this week! yay. 

My rocks! Mandy and Dad. 

June/July

I deleted this blog. But I have undeleted it now.

The last few months have been very very tough. I was put on prednisolone and that sent me a bit crazy to be honest. I put up with it because I knew it would help me get better. I started on 40 mg and went down 5mg every week. Well by 30mg I was very depressed. I was crying all the time I could hardly get through the day. I went and saw a Doctor and was put anti-depressants for the ocd, and anti-psychotics for the anxiety. They zonked me out a lot.

   So I continued. I went in for my endoscope on the 1st of June. I refused any sedation. What the hell? Why would you do that Jo? Well first and foremost I wanted to be out of the hospital as soon as I could and second why the extra risk?

Preperation room. 

So the endoscope begins. My consultant straight away said he is not happy with what he is seeing. "OOOh that must be very painful". Ulcers. Can you believe it? Even after all the prednisone I get the stupid ulcers. So all the pred for nothing. Afterwards my consultant comes to talk to me. Then I am taken in to a room with a nurse and asked all these questions about how I feel with the diagnosis. She was so concerned and very sweet. All the doctors were really nice and supportive. 

So back home. I'm on no meds getting worse by the day. Feeling down. I go back to the doctors and get my depression meds upped. I have finally got hold of my consultant's assistant and managed to get an appointment. I also got a letter saying that he hopes to put me on immunosuppressant's.

So thats the negetives. 

What about the positives...