Still plodding Along

[Sher78]

Lupus is pretty quiet at the moment (yay!) but always means one of the other issues is being a bugger. Currently, my APS is being an absolute devient, can't seem to stay within my therapeutic range at the moment and having lots of internal bleeds. Had to have it reset with vitamin K a few months ago as it leaped up to 7.8 (had C-Diff & campylobacter at the time so was surprised it went high instead of low). It behaved for a whole month and just seems to be going crazy again now.

Currently waiting to have Botox for the migraines (to try and reduce the frequency & severity), surgery to have my metatarsals possible fused & also still arguing with my ortho surgeon in respects of having an arthroscopy on my knee (he is saying it is too risky, yet I had a full hysterectomy a few months back to solve my adenomyosis & personally think that's a far riskier op).

Sjogren's has also decided to up it's game in recent months & I'm now finding I'm having difficulty swallowing. Also trying to get the GP to check for axial spondyloarthritis but they just keep sending me to physio, which is about as useful as a chocolate teapot.

EDS is also very tough currently.

My dad has also been diagnosed with MDS (turns out through diagnosing him with this, as well as a brain tumour) that he is where I seem to have inherited the dreaded AI's from (they have discovered he has Livedo, Sjogren's, Raynauds, plus a 'lupus like' condition, but what with the fact he is now just on palliative care, which totally destroys me as my dad is my absolute world, they are not going to bother to investigate).

So basically, things are a bit sh*t at the moment.

I do not feel sorry for myself though (since having the hysterectomy, my iron levels are good so although I am still supplementing occasionally, my RLS is behaving well) as things are in the works to finally get things sorted to a better degree for myself. I think my Dad not having long left has been the catalyst in me finding my fire again and questioning why I have to put up with all of these issues I tend to experience just because I am seen as 'complicated' and a 'health nightmare' by medical professionals.

How long this fire will last, I'm not sure but I'm trying to take back control.

[Spanielmadlady]

I lost my mum last year and I was the only one looking after her in the last 8 months of her life .its amazing where we find the strength to get through these difficult times. Sending you hugs of comfort to you both 🤗 💗 xxx

[Sher78 in reply to Spanielmadlady]

Bless you. I just need to make sure I'm strong enough physically & mentally for him, as well as my own (I find that I am always 'The Glue' that holds everybody together, even though 9 times out of 10 I'm the one falling to bits...but I think having others to focus on keeps me wallowing, potentially going into a downward spiral & helps to keep me stronger. Thank you x

[Spanielmadlady in reply to Sher78]

Snap...I'm the strong one despite falling to bits too. We are often the last ones to put ourselves first arnt we but we are strong cookies as a result xx

[dg70]

Sorry you're having a rough time. Watching someone you love deteriorate is awful. Make sure you keep any eye on your health as this is the time you could flare up more. I find my lupus and sjogrens flares often alternate like you were saying. Take care of yourself💜.