Steroids part 3: 3mg

I have been on the steroids for about two months. I started with 9mg, went down to 6mg about a month ago. That was the worst one so far. Now last week I went down to 3mg. I have been on it for several days, and I will be on it for only a week and then stop. I was meant to lower myself on this earlier, but it's not recommended to lower dose if you have a cold and I ended up having quite bad one. In fact so bad, that I had to go back on the 9mg dose for some days to help my body combat it.

Being on the lower dose, I have noticed a few things again. My acne is now almost gone. I still have a few red spots, but they look like to be healing rather than angry ones they used to be. Also I haven't gotten new ones and I can actually see my proper skin behind them!
I ended up getting quite bad moon face with all this. It just means that my face swell up quite badly looking like the moon man. With every decrease, it has been going down considerably. I still have moon face but it's a lot better now than it was. I can see some contours of my cheeks now!
I feel more tired again. Last time worst lasted about a week. This time it should be easier, since my body is producing more cortisols. I haven't been exhausted without a reason. I get tired, but more manageable tired than the exhaustion. I have had a few instances of needing to sleep half a day, but I put that down as having very aggressive cold. 

I think one of the worst things of this whole experience is that I felt normal, like myself while I was on the highest dose, and that I can barely recognise myself in the mirror. With my face being like a basketball with roundness and with the worst acne I can imagine, it's not easy. You can deal with changes like that better when they happen slowly and you have time to adjust, but with steroids, they happened within one week.
Also my blood sugars are slightly coming down and they are somewhat easier to control. They are still higher and I still need a lot more insulin than I used to, but it's more manageable. I really do hope that when I stop taking them, my face will go back to normal as would my blood sugars. Good thing with all this was that my eye check happened to be over a month after starting steroids, and I did not get any steroid damage to my eyes. It can happen very quickly! It often doesn't go away when stopping. It will slow down and possibly stop getting worse, but too often, it doesn't disappear on it's own.

At least now I know what to expect when they start this again. My doctors seem quite confident I have autoimmune hepatitis, so they will put me back on when my ALT starts going back up after this treatment.

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!

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.

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!!!!!!!