Made it back from a 4 day long trip to London. What a roller coaster! Yesterday I had to trek to 3 different hospitals which was absolutely exhausting and made me pretty sick (I don’t do good with car journeys). BUT I gained so much from it. Firstly, I got to see an ENT professor about some post surgery things. He has followed my story on the SCD support group, is one of the top in this country AND knows dr Lee which is pretty cool! I’m so over protective of my little ear these days so it’s nice to have someone I trust over here. 🙈 Anyway, he wanted me to have a scan because I have fluid built up in and around my ear which is affecting my hearing (like I don’t have have enough happening?). Not ideal really but should be a straight forward fix .. I then had to make what i was told to be a 4 minute walk down the road to get to the scanner. Ahem… Try this when your dizzy and don’t like being around moving objects!! So this mission took at least 10 minutes of clinging on to my dad (and trying not to fall on top of him….). If moving people and moving cars stopped to let me get to my destination life would be SO much easier. Or maybe I just need to buy a big bubble to live in….luckily though, my dad is a pretty amazing body guard/ taxi man etc so I’m WELL taken cared for on these crazy dizzy adventures….
I also saw my gastro doctor in the afternoon. Not much more to share there apart from him wanting me off the PICC line and in with a feeding tube (feeding tubes are a safer option). Still having a hard time with this one though. Especially when I’m finally getting all of this help from various different doctors – who knows where I’ll be in a month?! His argument is that we just don’t know how much longer this will go on for. Perhaps I’m a bit to postive in thinking that I can turn this around in the next few weeks?! In the meantime, he is referring me to another gastroparesis doctor who specialises in a gastric neuro stimulator. This is another treatment for gastroparesis but it involves pretty big surgery and doesn’t always work. Almost 100% sure this is not for me with everything else that’s happening but interested to find out about it. Other than that, there is not really much more he can do for me as none of the other treatment has helped me at all. My theory though (I like making these theories- maybe I’ll be right one day?) is that when all these other issues are solved, perhaps my stomach will kick start itself into working properly again.
My big love for cooking is really helping me come to terms with this gastroparesis diagnosis and with making better choices on how to best manage my symptoms through diet. I’m feeling constantly inspired, especially since drooling over whole foods market and Mae deli foods!
Oats, oats and more oats. And a lemon and ginger cold pressed juice (which is pretty awesome for nausea)
I can’t really emphasise how difficult it is though. When there is SO much I’m fighting against and I just don’t know what is causing what anymore. I still keep hoping that I’ll find that magic cure that will just stop me getting sick but I have come to realise this is never going to happen. There seems to be so much going on with my body right now and with it being so out of balance it really has no chance of healing without professional help and better self management. This does not mean I have lost hope by any means! I had to just think outside the box about where to go for treatment and what I can do to be constantly helping myself. Luckily I now have an amazing holistic doctor who looks at the whole picture (my chiropractor), two thyroid doctors, an ear doctor, an autonomic doctor and a gastro doctor (how greedy am I?). This is keeping me positive and hopeful that things ARE going to get better. No doubts!
On the brighter side, I made it back from London and can now rest for the next two weeks before I have to travel back again!
Ready to hibernate for a few days ✌🏼