Clinical Trial - Assessment Appointment

I was meant to be starting cyclosporin a few weeks ago. The day after I saw my derm I received a phone call in regards to a new clinical trial that was about to start. I would be guaranteed either humira or bimekizumab. I thought why not try it. What have I got to lose?

Yesterday was the screening appointment. It took longer than expected and it made for a very long day travelling in to the city from the country. I have a new pasi score of 16.3 (down from 21). I had an ECG, chest x-ray and blood tests done. I also gave a detailed medical history. I really thought that they may have wanted to know when I had my last poop

All I need to do is wait for the results of the tests, provide a mental health evaluation (due to having depression and there were some concerns) and I should find out in a couple of weeks whether I made it into the trial.

I stopped taking methotrexate earlier this month and next Monday I will need to stop using any medicated lotions and potions as there needs to be a 2-4 week wash out. My skin is flaring, red, angry and sore right now so I am really hoping that I make it in to this trial. If not then I start the cyclosporin and resume seeing my dermatologist as previously planned.

Psoriasis Clinical Trial Update

I received an email on Wednesday in regards to the psoriasis biologic trial. It's a lot more involved and longer than I was told it would be but that's okay.

Each visit (29 of them) may take up to 4 hours  some of them will involve a complete medical examination. I will be required to complete a daily diary on how my skin & mental health is going & there's a weekly questionnaire as well. There are some restrictions on medications, prescribed and OTC, that I can take and some that I may need to stop whilst on this trial.

However this is all subject to my passing the screening visit, which wont be for another couple of weeks. There will be only three patients accepted at this particular clinical trial It's a global study that has 100 other clinics participating. So I may not even qualify.

There is a small bonus though if I make it on to the trial, I will be entitled to some compensation in regards to my travel. As my Mum would have said, Every little bit helps said the little old lady as she widdled in to the ocean

The biologics involved are bimekizumab and adalimumab (humira).

Diabetes Update

I had my Diabetes Cycle of Care appointments on Thursday. It was time to get my height and weight checked (I hate the scales) and to see which services I might need to utilise and when I had my last checks with the optometrist, dentist, podiatrist, dietitian, diabetes educator, etc. I have found that I need to ask my GP to do the routine blood tests as well. I'm not sure that is a good thing or not. I know doctors get busy but to have to ask for tests to be done. At least he has a brilliant 'bedside' manner and explains things really well that makes up for it.

To be honest I have been feeling, for lack of a better term, burnt out when it comes to my diabetes. I am tired of checking my blood every day. I am tired of watching what I eat all the time. I want that piece of chocolate or that piece of cake when I want it and not just every so often. I don't have the energy to go for walks.
My hip and knees hurt far too often for my liking. I definitely have osteoarthritis in my right knee and I probably have it in my left also. I also have trochanteric bursitis in my left hip/leg. My GP has given me a request form for some x-rays so I shall get that done this coming week. My exercise physiologist has given me some exercises which should help, in his words, strengthen my bum muscles which in turn shall help my knees and hips.

I ended up seeing my diabetes educator yesterday. She said there really wasn't all that much that could be done about being 'burnt out'. That you just need to ride it out. Well that's great advice, NOT. She did however suggest that I see the practise nurse and talk to her about maybe seeing an osteopath and perhaps to even get a mental health plan started. It's worth a try I guess. If I don't look after myself who will look after Mark and the boys with their medical issues.

I Must Be Unwell - I Don't Feel Like Crocheting

Would you be shocked to know that I have not picked up my crochet hook since the middle of November? That it's been around six weeks since I put my hook down? That the last project I made I wasn't even interested in making but I only did it because a friend asked for a baby blanket.

To be honest I have felt no inclination to begin a new project and I haven't even missed it.

I have to be sick or something. Perhaps in the new year I might get my crochet mojo back but for now I don't feel interested at all.

I'm Not In A Good Head-space

Some of the beautiful flowers I spotted on our walk.

Angus and I went for a walk the other morning. I think we walked around 3 kms (1.86 miles). We were gone for about an hour or so. It was pretty darned cold that morning too but it was sunny so that helped. To be honest I don't mind walking in winter just as long as it isn't raining.

I have been trying to be more active lately, well since January any way. And I have been for the most part. There have been times when I feel completely lazy and don't want to do anything. I guess something has worked. I have lost a few kilos earlier in the piece and I have managed to keep them off. So that's a win, right? 

I am just in a bit of a funk right now though. With my stupid psoriasis and my diabetes plus my Church calling that I no longer want and this awful peri-menopause crap that I am dealing with things are getting me down a bit. I am tired of trying to do the right thing all the time. I don't want to have to put all these lotions and potions on my skin. I am sick of taking all these meds that have been prescribed. Honestly I take tablets up to seven times a day AND rub stuff on my skin at least twice a day. It is annoying trying to remember everything. I want to be naughty and do as I want for a change. Most of all I want to sleep. I want to sleep more than 6 hours a night and to not have any aches and pains.

I've told Mark that everything feels like it is becoming too difficult for me at the moment but he wants me to behave especially where my diabetes is concerned. He already lost someone he loved because she didn't do the right thing. Now I feel a guilty for even thinking this way. Stupid and selfish, that's me. I am tired of being the strong one or at least appearing to be.

I am not in a good head space right now. I need to do something that will make me feel good only thing is I am not completely sure what that is at the moment. Something to help me de-stress and not worry about everything that is going on at home. I tell you one thing though. Now that both of the boys are out doing their courses for a few days a week I am enjoying the quiet so that's something.

I saw a Diabetes Educator last week. She suggested that I stop being so hard on myself and that perhaps talking to a counsellor might help. So I did a self-referral at the Community Health Centre. Only problem is that it's a bloke that has booked me in for a chat. I don't know how helpful he will be. I'm pretty sure I would feel more comfortable talking with a woman. I'll see him and see how it goes but I will let him know that I would prefer to talk with a woman if I feel too uncomfortable talking to him. After all if I want to bitch about menopause stuff he wont be as understanding as I would want him to be, right? He just wont get it. Anyway I see him on Friday. I'll see how it goes after that.

When Worlds Collide: Virtual v Real

Brodie lives on his computer or maybe I should say he lives most of his life through the computer. He's a bit of a Facebook-aholic. His virtual world and real world overlap a lot. Sometimes he has problems dealing with what happens online and it oozes into our world. There have been many times where we have to help Brodie deal with things, help him learn from these experiences or just pick up the pieces. While there are times when there is an easy solution to problems there are plenty of times when I feel like I am banging my head against the wall.

Social media has it's place. It can be a very good tool if you know how to use it well. It can help people keep and maintain friendships. It can help create new friendships or even help you find lost friends. It can also do the exact opposite. Relationships can be damaged beyond repair and can cause many problems in the real world.

Having a family that has multiple disabilities including mental health problems can make things extremely difficult when it comes to 'life online' and life at home. I feel that sometimes Brodie's Aspergers causes him to misunderstand what people write. Online you cannot see a persons face when they have written something. Words may have a double meaning and can often be taken the wrong way. You can't always tell when someone is having a joke or are deadly serious. It can be confusing to "normal" people let alone someone who has a disability or a mental health problem.

Can you imagine what it is like when two people who have difficulties reading people in the real world get upset and misunderstand one another online? I know what its like. Its hard. Very hard.

Picture this: Someone has in the past been diagnosed with schizophrenia. They don't want to be medicated. Being medicated means that their creativity is inhibited. I totally understand that. Personally I would hate to be lose my creative side. I also understand what happens when you choose not to medicate. There can be swings in behaviour. You can be fine for months and then slowly you become paranoid and behave totally out of character. You can do things that you would NEVER think of doing when you are well.

Now throw into the mix someone like Brodie, who has Aspergers. Both of these people have difficulties socialising in the real world. They are much better 'friends' in the virtual world. They interact with more people and are even better at it online. There are still problems with misunderstandings but usually they can be explained and sorted out relatively easily (most of the time).

Now throw a spanner in the works just to complicate things a little further. The other person is having an extremely bad week. They are not medicated. The Aspie is joking around online having fun and the other person doesn't understand what the Aspie is joking about. They explain that it isn't funny, at least to them it isn't. Personally I didn't see what was funny about it either but that's beside the point. Words get exchanged. The Aspie is now scared, upset and is having a panic attack. For all you know the other person is anxious and upset too.

What do you do? Soothe the Aspie? Try and find a way to solve the situation. Get the Aspie to block the other person on facebook or set them to restricted profile? Run away and hide? I quite like that option but obviously you cannot do that. Running away from a problem never solves it. It only changes the geography.
If you were faced with this. What would you do to help out? Would you even bother to help out?

Sometimes I truly wonder whether social media is worth it considering all the problems it creates in my world. In Brodie's world. The virtual world is spilling over into our real world and I'm not always sure that it's a good thing.