Well I have been slack. It has been months since I last posted. But I have been a bit busy. In these last few months we had a seemingly never-ending run of house guests. I saw all of my family (even if only briefly). We renovated our kitchen, laundry, outdoor retaining wall and finished off a few other bits and pieces (new garage door, new windows, installed solar panels, replaced a hot water system). We had some time away with my parents at the beach, then travelled onto Sydney for my baby brother's wedding which was wonderful and hectic and tiring. I seem to be on an endless quest for a job. We've enrolled Charlotte in school (eek) for next year, and James had another trip to the states. So I guess I haven't been that slack.
Through all of this blobby has been behaving himself - sort of. I felt like I hadn't improved yet looking back, the dizziness is slightly less. However, blobby is not playing nice with the dexamethasone. My immune system has taken a battering and I am perpetually sick. I have had tonsillitis 4 times in the past few months and a never ending battle with coldsores. So when we got back from the wedding, I decided to go off the dex. I had gotten down to 0.5mg and was feeling quite good. The first few days were ok; I felt "lighter", my mood had improved, and the symptoms were under control. Then I got more fatigued. So fatigued. My bones hurt they were that tired. The nausea got worse. I started retching several times a day. Of course I was in denial that anything was wrong. Until a good friend made me realise that perhaps I wasn't ok. Last week, after vomiting half the day, I contacted my neuro who recommended I go up to the hospital. By that time, I had gotten my BP up to 160/100 and my heart rate up to 140 so I was put straight through. It turns out I was dehydrated too so put on a drip, given some zofran (sweet sweet zofran) and rushed through for an emergency CT scan in case there was more swelling. Thankfully blobby looks just the same. I was let home later that day - back on the dex (and at a higher dose of 1mg).
It's been tough since then. The dex mucked me around and I got sick again with tonsillitis (and a needle in my bum - ouch) and I have only been coping with a high dose of zofran. But today I feel a bit better. I am so so frustrated at this setback. Right now I am too tired to worry about too much else but I have had enough, and James and I have spent a bit of time researching other medications and options and looking at clinical trials.
On top of this, I have commenced tests to investigate my ever increasing blood pressure. I've done two 24 hour monitoring cuffs (the first one didn't record - grumble) which are looking ok but this weekend I have to do a sleep study. I still have to do an echocardiogram, ecg, bloods and 24 hour urines but I think it will all come back with nothing more than "white coat hypertension" but we'll see.
I promise to do more posts about some of the big things going on. I have written countless posts in my head but they never seem to make it to paper. But I will try to be less slack; once I find the time.