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!

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.

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.

New challenges

A lot has happened since I last wrote on this one. I have moved to a different country. I have gotten so many new experience and challenges. I wanted to write about my next new journey.

Since I last wrote, I had gotten a new health problem. Until last November, I lived my life normal. I was working, taking my ADHD meds and living normal life. Well, as normal as life with ADHD ever is. I have type 1 diabetes and due to that I get yearly blood tests. These are routine. They always test my cholesterol, renal function and liver function. My ALT levels were high. Their range is up to 52, and mine was almost 300. Doctors continued to take more blood test to see if they would spontaneously go down, like they do sometimes. They didn't. In fact, they were getting higher. They took more tests and I was getting some odd readings. My liver function has never been compromised and my liver works fine. Something is just destroying it. They took me off Concerta, because it has a rare side effect of causing liver damage. They referred me forward to liver specialist. They took more tests, including MRI, fibroscan and biopsy. Now almost a year and long road of the doctor's going back and forth what is causing my liver issue, they are doing the last test. They believe I have something called autoimmune hepatitis. It's autoimmune condition, where the body attacks the liver cells. Only treatment for this is steroids and immunosuppressants. They first start you on the highest possible dose of steroids, budesonide in my case, and let the inflammation heal. You will be able to see improvement in blood results in just a few weeks. For me the last test, is to see if my liver values go down with these steroids.

I have several diagnosis, but none of them have been as difficult journey as this one. The doctor's keep going back and forward what I have, they haven't been able to do anything except see what happens. Now for better or worse, I have medication. It's a no win situation in my opinion. If it doesn't work, they don't know what I have. If my labs improve, it will settle that I have AIH. Which means, for the rest of my life, I will take immunosuppressants. Those drugs aren't entirely fun either. I won't be able to be in the sun, because my skin will get even more sensitive to the sun. My risk of melanoma and other cancers will increase. The side effects aren't fun. Steroid side effects include minor but annoying ones like weight gain and moon face (very round face) and major ones like osteoporosis. With others they include, aside from the sun and cancer, horrible nausea, loosing hair and having worse immune system. I know these medications will save my life, but it't not easy to accept that my quality of life will not improve in the future. The disease itself has symptoms, like tiredness, nausea, loosing weight, possibly even cirrhosis. I am lucky that so far, there has been no evidence of serious liver damage. Just that something is persistently attacking my liver. I think one of the biggest obstacles for me is to accept that I don't have energy anymore. Days of feeling like a healthy human being are over.

Hopefully I will remember (I haven't been on ADHD meds for almost a year now and symptoms are fully back with new ones) to write about my journey to new health issues and how to overcome the mental effects of this new problem.

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.

Time

Wow, I've been away for a while and I've gotten over 160 views in the meantime! My muse has been hiding from me and I haven't thought of anything special to say. Now I have something!

Time. People with ADHD often experience time differently than neurologically normal people. Sometimes we start to do something. Like on last Saturday, I started to sew a skirt! I started at three by cutting the cloth. I start sewing with my machine and next thing I know, it's 7pm and I'm starving. Where did all the time go? This is called hyperfocusing. Time ceases to exist. There is nothing but what we're focusing. Even our bodies own signals aren't enough to "wake us up." I was starving when I was finishing. I didn't notice anything until I was done. Hyperfocusing is one classic sign of ADHD. It's one of the few times, when we don't suffer from lack of attention. Or which I prefer to call, attention to the whole world. The world and everything in it doesn't exist to us.

I've also noticed that time runs differently depending if I'm on ADHD meds or nor. Before them, time ran quickly. One hour was like one minute. Time would disappear into the chaos of my mind. I might be late for anything because I lost track of time. It would be everyday for me. Time just disappeared. I guess when the brain is full of everything, rambling thoughts, sounds, images, it's hard to keep track of time.
Now, that I'm on stimulants, time has slowed down. I get more things done. Sometimes when I'm cleaning and I've done the living room, part of the kitchen and bathroom, I come to take a short rest, I notice, I've only cleaned for one hour. I have more time. It's like I'm in a time machine. This comes with a down side as well. There is too much time. If I'm upset or tired, waiting two hours until I can go to sleep, feels like forever. And then people tell me it gets better. I hate that saying. When does it get better? How many eternities do I have to wait? One day is like a week for me, so waiting few years? Yeah, that's not good.. Even waiting to the next day is really long time. Getting bored can be really easy being like this. However it has a good side too. It's very easy living in the moment. The moment is generally good. Right now, spring is starting, snow is melting, it's getting warmer and I get to wear skirts soon! Hopefully the one I just made. People are more open and happy with the sun coming out. I get to notice all these things!

Dealing with Emotional people

First I'm going to apologise for my quality of writing. I've got pretty bad cold and I'm very off right now.

Then to the point:
This is something that a lot of people don't get, is how to deal with someone, who is drowning in an emotion. There are few very important ground rules:

1. Never every blame the person in any way about the situation. Part of it might be their fault, or all of it, but pointing it out will make the person who feels like they are drowing already, feel  A LOT worse. They know they did wrong. They are beating themself up for it already, you don't need to do it for them. Do not even hint in this direction!

2. They have a right to their feelings. So respect them! They are allowed to feel them. Especially someone who is drowning, they have all the rights in the world to feel them. When the emotional feedback lessens, then you can suggest what to do next time or offer help or advice. But the person needs to be calm to accept them. If the person isn't, it will feel like the other "helper" isn't listening to them or is trying to tell that "I don't have the right to feel". Person drowning in emotion isn't too rational.

3. This is the most important thing in the whole depacle: LISTEN! You do not need to say anything, but listen. You can affirm the other person with "that sounds horrible" or whatever fits. It will make the emotional person feel like they are being believed and listened. These feelings are really important. Also saying stuff about your own life, it is taking a big risk. Sometimes it can help, but sometimes it can make the emotional person feel like the other person is trying to take over the conversation with their own problems. Like I said, not thinking rationally.

This is actually called active listening. Most important is to listen what the other person says, and taking it all in. Not just keywords, but the whole message. Someone who is very emotional, won't be able to think straight and will feel like being attacked, if the other isn't listening. It's one of the worst feelings, especially if it's someone close to you. It will feel like an attack. It will feel like the other is saying that you don't have the right to be upset or sad, etc. There is a moment for feelings, and moment to fix the problems, but it's not at the same time. The person needs to be calm to be able to think clearly and start fixing things. That person needs to have all their strenght, because fixing life is one of the most energy consuming things you can do.

Why am I writing this? Well two things, one is that this is what I do automatically, when someone is upset. It's propably part of the reason why people often come to me when highly emotional. Two: because of ADHD, my emotional control isn't same as someone with normal brain function. We have somewhat hightened emotional responses. Now I'm talking bit generally, but some with personal experience. One reason for our hightened emotional responses is that the part of the brain that control emotions (and controls everything like impulses, etc) is working at lower rate. So, emotions in ADHD are a bit wild. Our emotional state can change really rapidly and go from one extreme to the other in seconds. Two, a lot of us have been told that we're not good enough from early age, because we have problems focusing. People with normal brain function don't understand what it's like for us. Focusing is hard for us when the whole world and all the small parts of it are calling our name at any given second. Not all of us are diagnosed at early age. I was diagnosed pretty late. I felt like I wasn't good enough because I can't sit still for longer than an hour. Or I had trouble understanding physics because it has so many different parts that affect one another. Everyone else can, so I should too. I suffered from really low esteem when I was in school. I'm smart, but I'm horrible in school. Then I started to realise, that my brain doesn't take information the same way as other's do. I started to realise, it's not a bad thing. I just have to do things differently! Then I got diagnosis. But this is why people should be very careful about blaming us and accusing that we're not workng hard enough. I've had three burn outs in high school, because I was trying to keep up with others. We have to use more energy in focusing than neurologically normal people, so we give more. Then saying that it's not enough is a slap to the face. Very hard slap that will sting really long time.
Also someone with emotional control issues, one emotion can bring about dozen more. I'm like this. I make a small screw up, I sometimes don't get upset because of the small screw up, but over everything that is going on at the same time and possible the last six months. Depending on the situation and people around me. Life isn't merely a roller coaster with ups and downs, but when there are ups, there can be many thing wrong. Life is never simple!

I think that is enough message for one day.

Breaking expectations

I love breaking people's expectations about me. I know I can look a certain way. If I'm working, I look quite professional. I work in a relaxed place, so I look bit too secretary at times. On my free time, I tend to look bit like a vampire queen. One of my exes actually didn't know I dressed that way normally, and got bit of a surprise. When we dated, I wore pretty normal clothes because of weather and he saw me in my natural look after we had broken up. That was fun!

People often assume I'm goth. I'm not. I think vampire is more accurate. I wear often black clothes. I like the colour and I tend to prefer bit unusual cuts as well. I do wear purple as well. Some people expect me to be all angsty and moody because I wear unusual black clothes, and then they get happy, easily excited and hyperactive me! Also black looks good on me!

And I also tend to favour very feminine style. If at all possible, I will wear a skirt! And tops to fit womanly curves. I look pretty feminine. Today I managed to shock people by telling I can fix a bike tire. Seriously. I can even change car tire if I have all the equipment. It's not like it's that hard! And then I turn on my music. I don't really know how this surprises people, because of the goth look, but I listen to heavy music. Right now Disturbed is my choice, especially in the mornings, and other times I listen to bands like Sonata Arctica. Especially at work, people get really shocked when it's my turn to choose music...

And it's fun when people realise I'm a big nerd! I definetly don't look like one. I play board games, watch scifi movies and tv-shows, larp, rpg. Only thing I don't know much is comics and that's from lack of opportunity.