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!

Off My Meds!!

I'm returning back to ADHD. Almost exactly a year ago, I was told I have liver damage. They didn't know what caused it (it's still unclear), and my doctors took me off Concerta immediately. One of the listed side effects is liver damage. From what I have read, it's very rare to happen after years of taking it, it's more likely to happen just after starting. Normally it settles down after being off Concerta for few months.

But away from my liver. So they took me off my stimulants. I was lucky and unlucky that at this time, I left my job. Lucky that I didn't need the stimulants for work, unlucky that well finding jobs that I can do without stimulants isn't really possible. I wouldn't have been able to continue my work without them anyway.
So since then, I have needed to manage all my symptoms. I have gotten new symptoms from all the stress from my liver condition being diagnosed. I can manage home life somewhat ok without my stimulants. My home is messy, things don't get done quickly and I often forget, well everything. But I have food, I do clean when I remember. I keep active since I know it keeps my symptoms away a bit. But trying to find a job is impossible. I cannot focus enough on writing applications. I forget what I'm supposed to write, and I remember all the good stuff, after I've posted my application. My applications are mess anyway. I am not good writing them on a good day, it's impossible on a bad day. Meaning without my medication. I know what I am good at, and what I am capable and I know for certain that I am not capable of London standard without my medication. I am good when I am on stimulants, but without them, my head is full of chaos. With the stress, I am drowning in it. And it's how it is. There is nothing I can do about it. I eat healthy, so I get energy throughout the day steadily. I exercise as much I can since it helps with stabilising my brain. I try everything to manage my stress and try to focus on other things. I do crocheting, which for me is best form of mindfulness. Learning new techniques helps to keep my mind occupied. But I don't have much control of anything anymore, least of all my own brain.

I did manage to get a part time job doing something I have done before, but I notice that I am not as good at it as I used to be. I miss stuff, I make mistakes and at the end of the day I am often quite frustrated with myself. But at least I get enough money to survive to the next day. Which is all I can hope at this point.

And the reason why I am not on medication at the moment is that my GP has requested medication review from mental health team and I am waiting to hear from them. I expect I will continue to wait another several months, before I hear anything from them. The waiting list is very long. I expect I will end up waiting for over a year to get an appointment, and I was referred during the summer. Hopefully I will have my appointment year from now! Until then, I just have to hope I manage to get enough money to get food and some extra so I can continue crocheting to keep sane!!

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.

ADHD and Sleeping

I haven't written for a while. My muse hasn't given me any ideas until today. I had hard time falling asleep and even harder waking up. It's normal when I'm not taking my stimulants. I toss and turn during the night, because my brain won't shut off. It just wants to keep thinking stuff. Even though I'm tired, I just won't be able to fall asleep. And it doesn't help, that ADHD brain generally tends to work best during the evening and night. A lot of ADHD people tend to be night owls. The brain picks up speed during the day. Excercise helps. So nights can be hard. I put my mind into a calm place for me, and keep it there, but it's still very difficult to fall asleep. It's a bit easier if I've gone to the gym or otherwise I've exhausted myself physically. Also I don't sleep as deeply as with stimulants.

And the other thing, waking up. Remember me saying about the brain picking up speed couple of sentence ago? Yeah, it doesn't help the mornings! When I'm on stimulants, I can wake up pretty alert. Without them, I keep pressing snooze button as long as I can. I'm just too tired. Amount of sleep doesn't matter one bit. It's as difficult after 6 or 9 hours of sleep. It gets a bit easier after coffee or other caffenated drink. Without them, mornings can be almost impossible. I have a rule, that my mom is not allowed to talk to me before some form of stimulant, coffee or medication. Normally people understand to give me space before badgering me. My mom doesn't. That's why I've given her the rule not to talk to me in person or on phone before I've had my breakfast and I give the ok. I'm extrovert and happy and patient person normally, except when I'm not on my stimulants and before coffee. I need to wake up first properly! After my coffee, I'm myself again.

And off the topic information: I need to take breaks from stimulants every once in a while. I had a talk with my doctor and stimulants can raise cortisol-levels in some people. Me having so many other health issues, it's doing that with me. I have to take couple days off every month and two breaks a year, where I don't take them for week or more. Symptoms for me are: difficulty falling asleep and staying asleep and anxiety.

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.

side-effects

Ok lets try again!! I can't work the blogger with too much grace since I don't know how to undo the weird colour behind the text

So side-effects of Concerta. It doesn't work well with anxiety. I had to stop taking it for two days before the opening night of the play, since I was too nervous. Then started it again with hope I wouldn't get the starting side-effects. Which are panic attacks. They come out of nowhere and go away about as quickly as they come. I just had three panic attacks in one hour and then just stopped. Although green tea might have had something to do with it. I don't want caffeine with the drug since they have similar effects on the body. I was just standing in the queu for cashier's and it just started. I wasn't doing anything to trigger it and I was just listening to music on my mp3 player. ADHD kicking in again, I wrote mp5 player.. I wonder what that would be, you can't really play mp5... Anyway back to where I was. I knew what it was so I just waited for my turn and kept coughing. I don't know why but it's what I always do when I get panic attack. By the time I got all my stuff in my bag it was all over! well the first one was over.. When I got back home, I got two more. Then nothing. I feel a bit tired after all those but mentally ok. I know what causes them so they aren't that scary. It's a bit scary when they come out of nowhere. But knowing what they are helps! and remembering to breath and not get more anxious!
 Tomorrow will be complitely different thank goodness!! Only worry tomorrow is that I remember all my lines and don't lose my voice overnight. I can barely talk after yesterday. I have to yell in the play and with a cold... Good thing is that Concerta really helping with acting. I can focus more on being on the stage. It's easier to remember lines, where to be, how I am related to audience, what I'm doing, what to feel. On a normal day, it's really exhausting for me. Too much going on. And with all that trying to keep focused on the right things and not get distracted by others. AND we're doing comedy so the stuff other's do is HILARIOUS!! I have to keep poker face through the whole thing and it's so much easier with this!! I'm not saying it's a miracle worker but for right people it makes life more.. I don't want to say easier but more  manageable maybe? Life isn't easy but it doesn't need to be too difficult. If there are things to make it more manageable, I'm all for it!!

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!