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!

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?

On Being a Diabetic

Being a diabetic isn't always easy. There are so many things that affect the blood sugars and when the only source of insulin is external it's tricky. Things that make blood sugar crazy include weather, excercise, food, stress, and any combination of these. I started working as a cleaning lady and I was working on my feet 7 hours a day and in bad heatwave. Yeah, this is not the best combination. First week I had at least one hypo a day, that means hypoglycemic or low blood sugar. And several at home. It's not good. And it was only from the heat and work. If I had been working at winter, my blood sugars would have been more manageable but this way I had to lower my basal insulin 35% and I had to cut at least one unit from bolus insulin. Basal means long acting or with pump it means the basic dose you need to get all of the time. Bolus means a bonus insulin with pump or short acting with just injections, and that's a correction for food or high blood sugars. It's really tricky sometimes to try to predict what to take, because I need to know what's going to happen during the day. I take long acting insulin twice a day which makes it easier, since I need only to know what I will do today and I don't need to take into account for tomorrow as well, like I did with Lantus. I've got some spontanious streak from ADHD and sometimes I feel I need to do something because of the hyperactivity so the Levemir gives me better leeway with this. 
My work ended last Thursday and my blood sugars have been rising. I've been slowly increasing my basal insulin. Well I finally had some proper relaxation last night, good movie and laughing and since then I've had 5 hypos. My highs were from stress not from less excercise.. Sometimes, it's a guessing game with this condition. Some diabetics have problems loosing weight because we need to take so much extra meals because of hypos. Sometimes it's really hard to predict how much to lower basal insulin! We don't often have weight problems, or let me rephrase that: we have less weight problems than type 2 diabetics. Our condition isn't cured with low carb diet or the like. Our bodies don't make insulin at all! We'd die without any insulin!

But sometimes it is easy. Before the heatwave, every time I took my blood sugars, they were perfect! My hypothyroidism was, or is, under my control, not other way around and that helps with blood sugar control. I didn't have to worry about lows or highs. I didn't need to be religious about injections, I mean I didn't need to count the carbs with too much care. When my diabetes is balanced, it doesn't get off balance too easily. If I missed injection complitely I would be screwed for a while, but having a meal and counting the carbs slightly off wasn't big mistake. I could even eat a kiwi or similar, and not have any insulin and highest BS would get, was 12. For a short while, that's nothing dangerous. I'd just take unit or two more with next injection.

I'M ALIVE!!

Yeah, it's been a while. I was in a surgery about two months ago and I haven't been able to write. Well, I was able physically but not mentally. My ADHD got even worse with the recuperation. It was a big surgery and I still don't feel normal. I haven't felt well enough even to take my ADHD meds. And my concentration has gone from bad to worse. And of course this all happened at the same time as several entrance exams to universities and normal exams from my current major.. I have started to feel the "normal" hyperactivity. My muscles keep itching all the time. Not as bad as it used to be but getting there. I've gained weight without it. Usually I have to keep moving alot during the day to keep it away but now not so much. I've felt strong enough to start excercising for fun. After the surgery all my other health issues, like Diabetes t1 and hypothyroidism been strange as well. Now they have started to settle as well. But the weird thing was that I couldn't take Concerta. I would stay up all night if I did. And I took it at a normal time as before but it worked really weird. I didn't understand it at first but after the second sleepless night, I took the hint. I took 2 pills on the second week after surgery and it did work really well. Small dose felt like I*d taken 3 pills once.. Gotta listen to the body! It will tell you what is right. It's been telling me to eat healtier as well. I've been craving mandarins which is weird. Good but still weird.

Anyway, I just wanted to write to tell I*m still alive. Watching Captain America, first Avenger, with a very furry friend. Who is shedding.. Just reminds me that if I ever get a dog of my own, I need to get one with black hair! almost all my clothes are black and with white/gold hair, it stands out! But animal therapy works! I feel lessed stressed even though I've got too many lines to remember and exams coming up!

Oh yeah, I have a complaint! 3D and high speed cameras! They do not combine well!! I don't get travel sickness easy, UNLESS it's 3D movie! I just saw Winter Solder in theatres and the hollywood scenes (fight and/or explotions) don't work well in the high speed camera. They shoot more frames in a minute than normal and it just looks very messy! I couldn't really figure out which was whose hand and what was going some of the time because the screen was just so messy! I'm good now, I've been waiting to say that for a week now!

Bit pissed off about ignorance

I am on a rant today.. One of the main channels in Finland, for news and other tv-programs, had an article about how to avoid diabetes. Well I read it.. Drink lots of coffee. Yeah I'm sure that'll stop diabetes.. I'm sure I could have stopped mine!! Is it so hard to type in TYPE TWO DIABETES! There are so many types of diabetes. Type one: autoimmune disease. Usually happens with children although it's not resticted by age. Oldest woman to get it was 94. In it the own immune system kills off the cells making insulin. So someone with type one has to inject insulin or have a insulin pump. There is no miracle diet so you could not take insulin. There is no option to taking insulin. I've had to instances where I've been asked questions about this. First one was, how much weight have you lost. NO it's not a polite question. And the answer was none. Weight loss doesn't help! well in the sense that it helps with the amount of insulin you've gotta take and blood sugar levels but IT IS NOT A CURE!! other one was that the person did not believe I was on merely insulin. He seemed to think it's impossible. You have diabetes you have to have some form of pills for it. NO THERE ARE NO PILLS FOR TYPE ONE DIABETES!! That's for type 2. Type 2 is the one where you can diet to help your condition. There are pills to help the insulin resistance. You can have extra insulin BUT IN MOST CASES YOU BODY IS STILL ABLE TO PRODUCE INSULIN! Just for some reason it's not making enough, it's not using it right or something is interfering with these processes. And there is gestational diabetes as well but that one ends as soon as the baby is born. And men you don't need to worry about this.

but my message for today

TYPE ONE DIABETES IS REAL, WE NEED INSULIN FROM A OUTSIDE SOURCE TO SURVIVE!! IT'S AUTOIMMUNE DISEASE AND YOU LIVE WITH IT UNTILL YOU DIE! THERE ARE MORE THAN TYPE TWO DIABETES OUT THERE!!!!!!!

Oh yeah me!

I just realised I could write something about me.. I am from Finland, born and raised. Eastern Finland to be accurate. I've travelled some, in particular Canada, France and Britain. I'm uncurable Anglophile, sorry!

I'm a nerd, I love scifi. I play some games on PC but my concentration doesn't really cut for playing them. I tend to get mad at the game pretty fast even though I normally almost never get angry. I do like playing car and other simulator games, and Skyrim. But more on the scifi stuff. I am a HUGE Stargate fan although I'll go for anything spacey and techy. My favourite character from Marvel is Iron Man. I love that he's flawed. And this is the reason why I like Loki as a character. I like complex characters. I actually love Snape as well since we don't know much anything about him and it keeps changing throughout the books. Yeah I'm a Harry Potter fan. I don't want to call myself Potterhead since I'm Slytherin. Here is the evidence from last Halloween! Come April I'll propably post something about Stargate Convention.

Right now I am studying English language and culture in University of Eastern Finland. I minor in cultural anthropology. Most of my free time goes into amateur theatre. I sing for fun and I can hold my note. But can't read them. I find it weird. I can read from mid C to first high C but beyond that I'm lost. I've been trying to learn for years. And theoretically I can read the rythm but in practise, not happening!!

I've got several health problems main ones being Diabetes type 1, hypothyroidism and ADHD. At some point, I will post somewhat angry post about diabetes. They tend to happen when ignorant people confuse it with type 2 or forget type 1 excists. I wish it didn't but it does and we have to live with it.

I apologise for the missing articles. I'm getting a bit better with them!! And some of my posts might be a bit confusing since my logic and coherence are a bit.. yeah well.. Oh look, a squirrel!!