Steroid trial part 2

I have come down from 9mg of budesonide to 6mg. The tablets are 3mg size so the decrease happens in 3mg intervals.

So far, it hasn't been easy. I have been taking the smaller dose for a week, and all the energy I got from the 9mg, has left. I felt better than I have in years. Even before I had liver issues. I have a feeling that my low energy levels have more to do with cortisol levels than liver. My liver functions beautifully, it's just being destroyed for what ever reason.
So as to what's been going on since starting lower dose. So when I was on bigger dose, I had the classic signs like moon face, acne, high energy levels. My face actually started to change in a day after the smaller dose! It looks now a lot more normal than it did. My acne is slowly clearing up as well. My cheeks and whole side of the face down to mid neck was covered in red spots. Since starting the lower dose, I haven't gotten any new spots and the older ones seem to be clearing up slowly. These are the nice effects. As for my energy levels, I have no energy. I seem to have gone back to my normal energy level. I had stressful week and worked three days and I needed three naps during the weekend to get some energy. I still need about 8-9h during the night, plus many naps. Hopefully by tomorrow, I will be able to work again. This is classic problem with low cortisols. There is still some hope that longer I'm on the lower dose, my body might realise it needs to start producing more of them. Problem is that doctors can't do any tests on cortisol levels, especially how my body produces them until I've been steroid free for several months. I am on the one that should effect less overall cortisols, but it doesn't mean there isn't any effect on them.
Also my insulin levels are still a bit mad. I have managed to go down 4 units of background insulin a day, which is less than 5%..

Also my liver specialists seems somewhat mental. They have somewhat tendency to chance their minds on moments notice. Every singe time I visit their office, it's different doctor and different opinion of what I have. Last visit came out of the blue. I was told I won't get any appointments until my steroid trial is completely over. Then I was called in couple weeks after. Apparently this one seemed to think I have been confirmed to have AIH and wanted to see my levels at 6mg to see if it's my dose.. No one told me about this. And as for the reading I've done, if they decide I have AIH by the end of this trial (after being steroid free for 2 months), they will restart steroids and then figure out my ideal dose. According to what I have learnt, then they will keep me there until my levels stabilise and then start moving onto more permanent immunosuppressant, most likely azathioprine. What I have learnt, be your own expert. Read, remember all the letters and information about your case. I had to remind the doctor that the reason why I am doing the steroid test in the first place is because my biopsy was indicative for medication damage, not AIH. Be your own expert. The doctors don't have time to read your full file. You might need to remind them of the important bits.

Also, find something that relaxes you. For me it's crocheting. I often crochet while waiting for the appointments or blood tests. Read, write, draw, walk in the park. Just keep active, do what ever you can to keep sane. The process of diagnosis is longer than  you want and it's stressful. Just take care of your own mental wellbeing!

Steroid trial

I am in the middle of my steroid trial. I was given budesonide to see how my liver reacts to it. So far, my inflammation in my liver has gone down considerable amount and my lab work are closest to normal than they have been for a year.

So they started me on steroids about three weeks ago. Budesonide is weird one, because it's not meant to go into the blood stream much. It is meant to fix the intestines and liver. With proper dose, it shouldn't go past liver. If you take too much, or your liver isn't good at metabolising it, it will leach into blood stream. With my case, it has gotten into my blood stream because I am taking massive dose of it.

First day, I took it about midday. Never doing that again! I didn't fall asleep properly until about 4am. Not fun! Especially since I woke up couple of hours later to go to work. Second dose, I took more appropriate time. Steroids are meant to be taken as soon as you wake up. Mine are to be taken 30-60 minutes before breakfast. Second day, I felt almost normal! I couldn't remember last time I felt so good! I had energy, I didn't tire as easily. My blood sugars were out of control, but otherwise I felt good for someone who slept couple of hours.
Since then, my energy levels have gotten better. Weirdly enough, my heart rate and blood pressure have gotten a lot lower. My resting heart rate has come down from 70s to low 60s. Blood pressure has been normal first time since last year. This shouldn't be possible with steroids, but apparently it is with me! My blood sugars are somewhat out of control. I had decided on the first day that I will not worry about how much insulin I'm taking and just increasing them as I need to. It seemed to help not to worry about doubling my doses. It's very scary for a diabetic.
As I have continued to take them, I have noticed other symptoms as well. My acne is back.. I wasn't looking forward to that. My exercise induced asthma is gone. I can really easily exercise now. I hadn't realised how bad it had been. I haven't had an inhaler for a while now since I didn't think I needed it. I am reconsidering that now.. And I still don't sleep too well. I don't need as much sleep as I have few months ago, but I keep waking up during the night.

Now I am starting the scary bit, bringing down the doses. I have been on 9mg which is the highest safe dose for me. Next will be 6mg. I am somewhat worried about my energy levels and weaning off from it. I am more convinced than before, that I have some form of problem with my cortisols. I am hoping that my cortisols have taken this as a holiday and will keep working when I lower my doses. Going from 6mg to 3 should be easier than the first one. My body will already have figured out that it't not getting enough steroids outside and will hopefully compensate.

Life Continues

Sometimes I wish time would stop so I could catch my breath. Getting diagnosed with something new is terrifying process. I don't know if the process being so slow for me is a good or a bad thing. I have more time to research what I might have. Research is one of my coping mechanism. The more I know, the less terrifying this new boogie man is. I have learnt to trust my process. This is not my first rodeo. Being diagnosed with three autoimmune diseases, ADHD and so much more, I know what to expect.

First part is the fear and never ending questions. What is this thing? Will it kill me? Will it affect my quality of life? How will it affect my life? What is the treatment?
At this point, my head will be full of fear, anxiety, anger, and questions. Taking control of the situation is only thing that helps me. First step is to figure out what questions I have. Then looking into what are the answers. I trust myself with google. I know where not to go, and initially to stay away from threads of people's experiences. Peer support is important, but it's not the first step for me. I can spent hours reading about what is happening in my body with this new condition.

After I have figured out what is going on, the despair and anger kicks in. Why me? What have I done to deserve all this? Easy answer, nothing. I was just very unlucky. I was born with genetics that hate me. Anger is part of acceptance. Anger is an emotion, and it has it's purpose. I try to figure out the reason, feel it and use it in a productive way. When you deal with it in a healthy manner, it will go away. If you dwell in it, it will take more energy than it gives.

At the moment, I seem to have hit apathy with my process. I am not officially diagnosed, so I cannot accept I have a new condition, but I am at the mercy of doctors and them doing another round of blood and other tests. I have no control over what is going on, so I just have to try to keep myself busy and not think too much until I have reason to. It's not easy. I have set up a new business. I crochet and try  to sell them. The fear of failure is very good distraction. I am trying to figure out all the ways I can market my shop. I will never make too much money out of my business, but few quid here and there would help. I work part time due to being so tired, so this helps. It keeps my mind active even when my body feels tired. It doesn't take too much effort, and it feels nice to create something pretty.

Me and Weird Experiences with ADHD

I had to take off a week from ADHD meds. I was feeling a bit weird. I get like this when I have an infection and I thought I had something, but my blood test came normal. I did have slight cold but not bad enough for this kind of reaction. But it was an experience! I definitely noticed the difference. Doing normal stuff took so much more time than with meds. Preparing dinner was a nightmare! I would constantly forget things, go back and forth between kitchen, computer and forgetting the timer. Forgetting to put right things in right places at the right times. I don't think I used ANY seasoning on my food! I forgot half the ingredients in the store. Using lists never helped me since I kept forgetting to do the list, take the list with me or check it. The chaos in my life and head was a lot worse. I like a bit of chaos, but now with the meds I've grown used to less of it.

Another thing: I don't count any of my health issues as bad things or curses. I know many people feel even having one of these is horrible. Especially with ADHD. So many feel that it's a curse. I don't know if it's how I was raised or my own personality, but I don't think it as a bad thing, nor a good thing. It just is. It gives and takes like anything in life. Nothing is perfect but the attitude towards everything and anything is the thing that matters the most. There are days when I curse having diabetes or hypothyroidism or ADHD, but those are just bad days and they go away on their own. Then there will be a good days! I've had diabetes so long that I don't really actively think about it anymore. Most of the processes are automatic, like counting carbs and correcting for them, taking insulin, and staying consious on how I feel. I've had it so long I can recognise signs, ok now I*ve got high or low blood sugar. And I can have some fun with it. One of the funniest things for me is BS. It's short for blood sugar. I think getting diabetes at such young age really affected how I think about health malfunctions. My body hasn't worked like most people's since I was 8. So getting different diagnoses isn't too shocking for me. I get the initial shock yes, but after that it's just, ok I've got this, lets go back to normal life! I'm glad I'm like this. It makes my life so much easier! I do worry about some normal stuff, but I rarely get hang up on them. I refuse to let myself get that way. Life is very stressfull as it is, I don't need to create more stress. So much of that stress is created by the person. I can choose to let it go on, or think and worry about it. I'm not perfect in that aspect. There are certain things that I can't get over just like that, especially things that involve other people or waiting. I'm hopeless at waiting! And I always listen to people who have problems, but my patience runs out when they come to me about the same problem several times a week expecting me to fix it, when it's their thing. I'm their friend, I offer advice and any help I can give, but fixing big issues is their responsibility. Unfortunately there are people like this..

I got bit off track again! What attention problem?

ADHD and My Experiences with It

I've always been a bit weird child as long as I can remember. I never liked what the masses like. I was a nerd since I knew how to read. I never got along with the popular kids. I like the real characters. But aaanyway.. I knew something was wrong with me since I was 8. I couldn't read well. It was way to difficult. But with child's logic, I decided to hide it. It took me about two years to learn how to read properly. Once I found an interesting book, Star Wars pocket book, I started reading incredibly fast. I just figured I finally cought up with others.. At high school, I started to get t he reading problems again. What I learned later on that I got hypothyroidism at this point which made the problem worse. I considered going to the nurse with the thought of having Dyslexia. Well I didn't. Then more years later at University, I got the though again going to the nurse with Dyslexia since my reading ability was getting ridiculous. I could not concentrade on anything, I kept forgetting, skipping lines, words.. Noice somewhere, and I forgot everything I read in the last few minutes. At some point here I had read up on ADHD and realised this is me! I couldn't concentrade on anything. I couldn't remember anything more than few seconds untill something else came up. My cleaning was, start pick up things on the floor, "oh there's a fork, I'll take it to kitchen, what's my hair dryer doing in the kitchen, lemme take it to bathroom, oh clothes I'll put those away" and on it goes. I might remember the cleaning part days later when I saw a dust bunny hopping by. I took a test and I got 96 points on concentration and remembering. The limit to suggest ADHD was 75... Finally I made it to doctor's office. Few months after that I got an apointment to psychiatric doctor who leads the team on neuropsychology. At the first appointment he told me it sounded like I've got ADHD and I was so relieved. We made more appointments for diagnosis and treatments. Finally I was getting the help I needed.

At my last appointment, I got a Concerta trial. It is the most often used ADHD medication. It is a stimulant. Its effects last about 10 hours or is supposed to. I've taken it on two days now. Only thing I've notices I am always hungry. Which is sort of ironic since I was warned by the doctor and pharmacist it will most likely take away my appetite. I was already rooting for loosing a few kilos. No such luck. I've taken it on two days and I've noticed, I'm hungry, I get more tired in the evenings. This one could be from exhausting theatre. We're in the middle of a play season. We're just past the midway. I'm always exhausted when I get off stage. But this is more profound. I've fallen asleep more easily than normal. Often I've had trouble falling asleep when my brain won't shut off. It just keeps thinking about thousand things it doesn't need to. I haven't noticed anything in my school work. Well that's not entirely true. I noticed several mistakes in my own essay, which teacher in a few minutes pointed out to me. I've been reading that essay for weeks and not noticed anything.. Not sure if it was the paper form of the essay or the meds. Maybe it is helping since I am here writing this one. I showed some iniative!! and managed to start something. And now I am hungry again although I ate large breakfast about an hour ago. The meds are starting to kick in apparently.

I just thought I'd share my experiences with adult ADHD. It's been a process but an interesting one. I know I'm forgetting alot of stuff for this one but I'll add them in later posts. Like more symptoms and how this is going.