Many people have asked me what Lupus is. For those of you who know who Salena Gone is or Sarah Hyland may have heard of their kidney transplant. Those were due to lupus. It is autoimmune and attacks your connective tissue. The most concerning place this happens is the kidneys. It was the kidney test that really set off the current alarms. We're still testing and trying this lupus treatment before there is any final decision on the diagnosis, but we're moving closer to a specific diagnosis (my current diagnosis is undifferentiated mixed connective tissue disease which means it's missing a few things to be lupus, but is very similar. Lupus is more dangerous than undifferentiated which is why the diagnosis is hard to pin down and is the focus of all of the testing).
More to follow soon.... I hope!
Tuesday, May 28, 2019
Tuesday, May 21, 2019
Holy rain Batman!
It has been raining off and on for weeks now. Cold, so damp it seeps into your bones. This, as we know, is the absolute worst thing for my stupid body. Hence the big ass move to an island 2000 miles away. Everything hurts. I'm exhausted.
Yesterday my Dr actually prescribed naps. Naps! Every day at the same time no matter what. So, today I fought and fought to not lay down until noon- our designated nap time- and now I'm lying here utterly miserable. This cold damp rain is really knocking me out!
40 days until my body won't have to deal with freezing dampness and cold rain!
Monday, May 20, 2019
Confusion, relief and nausea
So, I bet you thought we were done with that whole Lupus thing huh? Funny.
So many symptoms so little time, so I'll cut to the chase and say lupus was never really taken off the table but "undiagnosable at that time". New symptoms necessitated 6 vials (normalizing chronic pain) worth of blood tests and two seperate urine tests days apart. All precautionary. Of course until the results came back!
Results are concerning and enough to begin lupus treatments.
Today I'm too tired and emotionally off to finish this post how I'd like, but suffice to say side effects of these new treatments may make them unfeasible for me. I'm giving it the best try I can since the meds take months to get into your system and take effect.
So for now managing nausea, dizziness and exhaustion have consumed my days these last couple of weeks. I'm getting better at it but I'm going to go now, recover from this post, talk to my Dr and sleep to prepare for commitments tonight that I will not miss.
Aloha! 41 days to relief?
So many symptoms so little time, so I'll cut to the chase and say lupus was never really taken off the table but "undiagnosable at that time". New symptoms necessitated 6 vials (normalizing chronic pain) worth of blood tests and two seperate urine tests days apart. All precautionary. Of course until the results came back!
Results are concerning and enough to begin lupus treatments.
Today I'm too tired and emotionally off to finish this post how I'd like, but suffice to say side effects of these new treatments may make them unfeasible for me. I'm giving it the best try I can since the meds take months to get into your system and take effect.
So for now managing nausea, dizziness and exhaustion have consumed my days these last couple of weeks. I'm getting better at it but I'm going to go now, recover from this post, talk to my Dr and sleep to prepare for commitments tonight that I will not miss.
Aloha! 41 days to relief?
I have no pictures of my birthday
Because I spent the entire day asleep in bed.
Why that day? As I told M "my body doesn't give a shit that it's my birthday". My daughter made me a brownie cake for breakfast (our family tradition), I woke up long enough to eat some of that, open the gift from my little loving family and went back to bed for the rest of the day. My kids went with their dad to get Legos so they would have a good day and I saw them all again for a quick picnic dinner in bed with me. I haven't seen them since then.
It's not the birthday really, at least not today, because I don't have the energy to care. But what I do seem to have the energy for is lying in bed, today in tears, waiting impatiently for my Dr to call for our scheduled phone appt so I can go back to bed.
My husband and kids make my life work and worth it. I'm lucky beyond words to live the life I live. I truly never forget that. But like anyone some days are better than others right? But I'm still here so
Happy birthday to me! 😁😍
Why that day? As I told M "my body doesn't give a shit that it's my birthday". My daughter made me a brownie cake for breakfast (our family tradition), I woke up long enough to eat some of that, open the gift from my little loving family and went back to bed for the rest of the day. My kids went with their dad to get Legos so they would have a good day and I saw them all again for a quick picnic dinner in bed with me. I haven't seen them since then.
It's not the birthday really, at least not today, because I don't have the energy to care. But what I do seem to have the energy for is lying in bed, today in tears, waiting impatiently for my Dr to call for our scheduled phone appt so I can go back to bed.
My husband and kids make my life work and worth it. I'm lucky beyond words to live the life I live. I truly never forget that. But like anyone some days are better than others right? But I'm still here so
Happy birthday to me! 😁😍
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