My Joyful Valentine’s Day

I’m really happy right now ❤ ! Although there has been a lot of hardship in my life in the recent months, I’m grateful for all the good things that have happened to me :). There are so many reasons to love my life:

  • I have wonderful friends! You all know who you are <3. I’ve gotten support and the chance to vent all the frustrations off my chest and share my moments of joy. Last week we went to walk with my friend Mia, and Franz had the chance to play with his friend, Hugo the kitten ❤ 🙂

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  • I’ve been accepted into EURORDIS‘s Expert Patient Summer School that takes place in Barcelona 6th – 10th of June this year! EURORDIS is an European non-governmental, patient-driven alliance of patient organisations representing 705 rare disease patient organisations in 63 countries. The Summer School program brings rare disease patients and researchers together and trains the patients to understand orphan and rare disease drug development better and to advocate patient needs. I applied last December but didn’t think about it that much as probably lots and lots of people across Europe applied as well. I’m so lucky I got accepted :). The best part is, travel and accommodation expenses are covered :). I’ve never been to Spain before so I’m really, really looking forward to this summer! The program also consists of online education that starts sometime next week.

  • My asthma situation is slowly getting better and I’m going to start reducing my prednisolone dose. It’s a long way down to my normal HC and weaning is always a taxing process but I’m trying really hard to be patient and not lower my dosage too fast so I won’t get trouble with low cortisol symptoms. As I still have dyspnea I’m going to stay on prednisolone until I get to 10 mg per day that equals 40 mg HC and then switch back to using HC. Recently I’ve weaned down from stress dosing too fast and have then been suffering from nausea, dizziness and weakness. Now I’m going to try to do it slower – I’ll lower my pred dose 1.25(-2.5) mg per week and when I switch to HC, 2.5mg per week until I get back to 30 mg / day. I still don’t have any Cushy signs or symptoms.
  • Franz is just as wonderful as usual – he brings me so much joy every day ❤

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Happy Valentine’s Day!!!

xoxo,

Veera

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