Back on treatment

Took methotrexate yesterday after a 2 week break due to the tonsillitis and toxic hyperthermia. It has hit me with a bang. Blacked out last night and then was sick overnight. So a day in bed is definitely called for today. Somehow still sticking to my diet. Lost a grand total of 2lbs over the last two weeks. I know I should be happy that I am finally seeing losses again but at this rate it’s going to take a stupid amount of time to actually see the weight loss. And am worried I will lose all my motivation when am having to try so hard to get such small results. Need to go swimming too seen as it’s literally all I can do.

Got a bit motivated in changing my life this week after my closest friend has moved to Brighton. I rarely saw him as our lives are so different but talk most days so am hoping things won’t change too much between us. But I do pester him. Out of boredom and being lonely. So I have finally accepted I miss working so much. I miss having colleagues and having an Andrea that isn’t just a wife and mum. But getting a job isn’t going to be easy at all. All I have done is care for the last 8 years. I am over qualified for admin roles in care and despite being the only applicant I never heard anything about the job I applied for which was perfect. So looking at volunteering roles. Found some that look really good. It will give me some experience while I am studying and give me a life as well. So am excited for some changes in September. I don’t want to be just a poorly disabled person.

Most recent blood tests were all over the place. Problems with kidneys and liver. In fairness I am laid in bed now thinking it’s probably a good idea I didn’t get that job. I could cope with the physical disabilities I am left with if I didn’t feel so poorly all the time. In two weeks I switch to new weekly injections with a biologic drug. Am scared for the new side effects but I have to try. Although the drugs can’t take the pain away as they can’t fix the damage. I need a third surgery on my shoulder and starting to wonder if it’s worth it. I actually can’t remember when the last one was but it wasn’t even 6 months ago. I know that because my sling is still in my car and only had it 6 months ha.

Had a lot of problems with jess at school recently. Just think schools are rubbish now. When I was at school back in the victorian times children actually got told off. A delightful child has been picking on her and instead of being told off they are telling me jess needs to toughen up. She is 9. Then they tell me that the other child has some problems and struggles to express herself appropriately. No, she needs to know that being mean is not right. And people can’t use special needs as an excuse with me. Finley has exactly the same expectations with his behaviour as jess. Talking of finley we are having some concerns with him as well. He cant seem to walk in a straight line and is bruised and cut all over. Got a lot of appointments with him over the next 2 months. Got the podiatrist in 10 days to see if inner soles can help him as his feet and ankles roll. But dyspraxia is also being considered. And that can also affect his speech. So yet another condition to research.

Jess was in Alice in wonderland last weekend with her drama group. We watched Friday night then I chaperoned both shows on Saturday. Oh my God the pain…….! I get really bitter I used to be able to do things like that fine. But now it’s so hard. But I managed it and glad I was there for her. And as any proud mum would think, she did great.

Another health issue at the minute is acne. My skin on my face is terrible. So fed up with it. Never had it as a teenager so certainly don’t want it now. It appears it is a side effect to the methotrexate. But obviously if I come off it the acne will go again but my joints will deteriorate further. I hate it though. Am so self conscious. Trying different treatments but tried two so far and not worked. Docs advised it’s harder to treat when caused by medication. Got my consultant in two weeks and hopefully he might have a better idea. Anyway after being awake for 4 hours and laying in bed I need to sleep again.

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