Life Update!
Jun. 16th, 2012 06:51 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
jeshyrWot has been happening? Lots!
Some good, some bad... unfortunately.
The TL;DR version is that my physical health is rather sucky.
My physical health has been SUCKY lately. Really really sucky, even.
First I've been having heaps of allergy-type symptoms due to what's diagnosed as a Mast Cell Activation Disorder. This basically means I'm having allergic-type reactions to heaps and heaps of different things, but these reactions are not technically allergies. I've had the usual allergy testing from the hospital and they keep showing up that I have no IgE-mediated allergies - those are the "standard" type of allergies. But I'm also definitely having allergy-type symptoms, some with identifiable triggers and some without any triggers that I've pinned down. Mostly I'm just telling people it's "allergies" because it's easier than explaining all of the above - as far as I can tell the difference is only significant if you are an immunologist or an allergy specialist!
In any case I'm now taking a boatload of antihistamines, plus eye drops and nasal spray, PLUS oral steroids (prednisolone) to keep these reactions mostly under control. It isn't completely stopping the reactions from happening and the prednisolone especially is not a long-term solution because the side-effects are awfully sucky, but right now it's more stable than it was before.
Unfortunately this has had knock-on effects too. One of the things that's fairly well known to be likely to cause allergy-type reactions in a lot of people is beta-blocker medications used to slow down the heart rate. Most of you probably know that I'm on a bunch of meds to fix my heart rate and blood pressure problems, and beta-blockers were one of them. Since the allergy-type reactions were so very bad my allergy doc wanted me off the beta-blockers... and this made sense, I did check in the published literature and stuff.
Unfortunately taking me off the beta-blockers seems to have unbalanced my whole system, even though we replaced them with a different med that had a very similar action. Bizarrely and unexpectedly my blood pressure stopped being low and is now being mostly high with sudden drops all the time... this has the unhappy effect of giving me all the symptoms caused by the low blood pressure without the ability to throw medications at them because we don't want to raise the level it's at when it's high.
I'm seeing the cardiologist (heart guy) on Monday but for now they've taken me off most of the heart meds. I don't know what my blood pressure is now because my home BP monitor won't measure it when my heart rate is this fast, but I can tell you for sure that my symptoms are FAR worse than they've been for ages. Here's the list I have for taking to the doctor on Monday, the number of plus signs beside these words are more-or-less indicative of how much worse these things are compared to with-meds:
And even after all this, last time I measured my basic BP was still mostly high! It's just the times it suddenly goes really low that mess me up enough to cause all the symptoms ... seems like a catch-22.
I'm really hoping that they'll have some useful answers for me on Monday even though I know it's unlikely. I've spoken to a few other people with similar issues who've had their BP go from mostly-low to mostly-high and most of them said they just had to put up with being sicker because they couldn't find safe meds that helped. Fingers crossed that we can sort this... it's pretty scary.
In addition to all of the above, I've been having more allergy-type symptoms in response to exercise. Even a tiny bit of exercise like my 10 minutes of physiotherapy are causing allergy-type reactions. For now, since everything else is also crappy, my allergy guy just said to not do my physio but that's not really a long-term solution either. I'm seeing him on Monday too but - very sensibly - he doesn't want to change anything in my regime until the cardiovascular stuff is settled down as much as possible so I'm expecting he's just going to get me to come back in a fortnight and we can think about it then. It's Just Another Thing though, at the moment :/
If we can stabilise the mast cell problems and stabilise the cardiovascular problems then I can get a chance to claw my way back to a higher functioning level again. Fingers crossed ... it seems a long way off just now.
Good stuff to finish, because that's fun...
Tammy my foster-kitten who's in kitty rehab and was initially too scared to even let us look at her has been progressing unbelievably. In September when she arrived she was so afraid that she wasn't even eating or moving to pee - anybody who has ever had cats knows how fastidious they are so having a cat who's so terrified they won't use a litter tray is pretty scary. But she's slowly progressed and to my amazement is still slowly progressing even after 10 months here ... she's at a place now where she comes and asks for pats and cuddles multiple times a day, although she's still nervous if I'm sitting up rather than in bed where she's more used to it. She intermittently lets my flatmate and one of my carers pat her too, if she's otherwise feeling relaxed and they move fairly slowly - this is a new thing so she's still quite unsure.
I have learned that her ability to generalise "this is safe" is very limited. That makes sense with her background and it helped me once I realised it - for example she learned that it was safe to jump up to eat food on my lap when I'm in the chair, and she learned it's safe to come and ask for cuddles when I'm lying in bed, but she hasn't generalised this to coming to ask for cuddles when I'm in the chair. I am trying to vary things more now so that she gets practice in feeling safe in different ways - for example even sitting in a different posture to normal or sitting on the other end of the sofa will make her initially pause and be more cautious.
I am amazed every day at how brave she is and how far she's come. I really think she's going to have a good life now, and that's not something I was at all confident of when she was first here.
I have been doing lots and lots of craft! Craft consists of crochet and tunisian crochet and some stitching with felt stuff at the moment. Although physical health issues mean craft goes slowly it has still been progressing. I've been putting photos of my crafts up on flickr with occasional kitten photos for bonus amusement - apologies for those not photo-enabled but they aren't described in text.
My family's been having crafting-women get-togethers every fortnight or so which is fantastic fun and means I get to spend time with my family which is really cool. Also a chance to try different or new crafts because we all have different interests.
One of my old carers left because her other job offered her 8-hour shifts and mine are only 2 or 2.5 hours. I hate to see her go but she was very nice about it and I understand why she needs the other work. Luckily the replacement carer seems to be promising and should be all good once we get to know each other better, hopefully!
Hmm that was not really a good thing but it's more an I-feel-positive-about-the-future thing I guess.
Things are going great with my current flatmate, she's an angel who I am blessed to have living with me. And she feels the same way about me too, which is wonderful! I hope she's able to stay living here for a good long time.
Hugs,
r
Some good, some bad... unfortunately.
Bad stuff first
The TL;DR version is that my physical health is rather sucky.
My physical health has been SUCKY lately. Really really sucky, even.
First I've been having heaps of allergy-type symptoms due to what's diagnosed as a Mast Cell Activation Disorder. This basically means I'm having allergic-type reactions to heaps and heaps of different things, but these reactions are not technically allergies. I've had the usual allergy testing from the hospital and they keep showing up that I have no IgE-mediated allergies - those are the "standard" type of allergies. But I'm also definitely having allergy-type symptoms, some with identifiable triggers and some without any triggers that I've pinned down. Mostly I'm just telling people it's "allergies" because it's easier than explaining all of the above - as far as I can tell the difference is only significant if you are an immunologist or an allergy specialist!
In any case I'm now taking a boatload of antihistamines, plus eye drops and nasal spray, PLUS oral steroids (prednisolone) to keep these reactions mostly under control. It isn't completely stopping the reactions from happening and the prednisolone especially is not a long-term solution because the side-effects are awfully sucky, but right now it's more stable than it was before.
Unfortunately this has had knock-on effects too. One of the things that's fairly well known to be likely to cause allergy-type reactions in a lot of people is beta-blocker medications used to slow down the heart rate. Most of you probably know that I'm on a bunch of meds to fix my heart rate and blood pressure problems, and beta-blockers were one of them. Since the allergy-type reactions were so very bad my allergy doc wanted me off the beta-blockers... and this made sense, I did check in the published literature and stuff.
Unfortunately taking me off the beta-blockers seems to have unbalanced my whole system, even though we replaced them with a different med that had a very similar action. Bizarrely and unexpectedly my blood pressure stopped being low and is now being mostly high with sudden drops all the time... this has the unhappy effect of giving me all the symptoms caused by the low blood pressure without the ability to throw medications at them because we don't want to raise the level it's at when it's high.
I'm seeing the cardiologist (heart guy) on Monday but for now they've taken me off most of the heart meds. I don't know what my blood pressure is now because my home BP monitor won't measure it when my heart rate is this fast, but I can tell you for sure that my symptoms are FAR worse than they've been for ages. Here's the list I have for taking to the doctor on Monday, the number of plus signs beside these words are more-or-less indicative of how much worse these things are compared to with-meds:
- Fatigue +++
- Palpitations/tachycardia ++++
- Dizziness/faintness on sitting/standing +++
- Brain fog ++
- Endurance --
- Migraines +
- Muscle pain +
- IBS/Reflux/Gastroparesis ++
- Leg cramps +
And even after all this, last time I measured my basic BP was still mostly high! It's just the times it suddenly goes really low that mess me up enough to cause all the symptoms ... seems like a catch-22.
I'm really hoping that they'll have some useful answers for me on Monday even though I know it's unlikely. I've spoken to a few other people with similar issues who've had their BP go from mostly-low to mostly-high and most of them said they just had to put up with being sicker because they couldn't find safe meds that helped. Fingers crossed that we can sort this... it's pretty scary.
In addition to all of the above, I've been having more allergy-type symptoms in response to exercise. Even a tiny bit of exercise like my 10 minutes of physiotherapy are causing allergy-type reactions. For now, since everything else is also crappy, my allergy guy just said to not do my physio but that's not really a long-term solution either. I'm seeing him on Monday too but - very sensibly - he doesn't want to change anything in my regime until the cardiovascular stuff is settled down as much as possible so I'm expecting he's just going to get me to come back in a fortnight and we can think about it then. It's Just Another Thing though, at the moment :/
If we can stabilise the mast cell problems and stabilise the cardiovascular problems then I can get a chance to claw my way back to a higher functioning level again. Fingers crossed ... it seems a long way off just now.
Good kitten stuff!
Good stuff to finish, because that's fun...
Tammy my foster-kitten who's in kitty rehab and was initially too scared to even let us look at her has been progressing unbelievably. In September when she arrived she was so afraid that she wasn't even eating or moving to pee - anybody who has ever had cats knows how fastidious they are so having a cat who's so terrified they won't use a litter tray is pretty scary. But she's slowly progressed and to my amazement is still slowly progressing even after 10 months here ... she's at a place now where she comes and asks for pats and cuddles multiple times a day, although she's still nervous if I'm sitting up rather than in bed where she's more used to it. She intermittently lets my flatmate and one of my carers pat her too, if she's otherwise feeling relaxed and they move fairly slowly - this is a new thing so she's still quite unsure.
I have learned that her ability to generalise "this is safe" is very limited. That makes sense with her background and it helped me once I realised it - for example she learned that it was safe to jump up to eat food on my lap when I'm in the chair, and she learned it's safe to come and ask for cuddles when I'm lying in bed, but she hasn't generalised this to coming to ask for cuddles when I'm in the chair. I am trying to vary things more now so that she gets practice in feeling safe in different ways - for example even sitting in a different posture to normal or sitting on the other end of the sofa will make her initially pause and be more cautious.
I am amazed every day at how brave she is and how far she's come. I really think she's going to have a good life now, and that's not something I was at all confident of when she was first here.
Other good stuffs
I have been doing lots and lots of craft! Craft consists of crochet and tunisian crochet and some stitching with felt stuff at the moment. Although physical health issues mean craft goes slowly it has still been progressing. I've been putting photos of my crafts up on flickr with occasional kitten photos for bonus amusement - apologies for those not photo-enabled but they aren't described in text.
My family's been having crafting-women get-togethers every fortnight or so which is fantastic fun and means I get to spend time with my family which is really cool. Also a chance to try different or new crafts because we all have different interests.
One of my old carers left because her other job offered her 8-hour shifts and mine are only 2 or 2.5 hours. I hate to see her go but she was very nice about it and I understand why she needs the other work. Luckily the replacement carer seems to be promising and should be all good once we get to know each other better, hopefully!
Hmm that was not really a good thing but it's more an I-feel-positive-about-the-future thing I guess.
Things are going great with my current flatmate, she's an angel who I am blessed to have living with me. And she feels the same way about me too, which is wonderful! I hope she's able to stay living here for a good long time.
Hugs,
r
no subject
Date: 2012-06-16 09:11 am (UTC)I don't think I realized that your foster kitty was so scared of everything - poor girl. Its great that she's picking up so well.
no subject
Date: 2012-06-16 11:15 am (UTC)no subject
Date: 2012-06-16 09:35 am (UTC)my first thought about your current health problems was that you've been taking so many different medicines that your body is now completely confused about how to react to anything. so stopping most of them, at least for a while, might be the right thing to do, although i imagine it'll be rather violently uncomfortable for you :-(
of course, i may just be talking out of my arse. but whatever it is, i hope they get it all sorted quickly, because i hate to think that my favo(u)rite penguin is feeling worse.
how about a (virtual) group hug from Boggle, Manatee, and me?
*H*U*G*
no subject
Date: 2012-06-16 11:14 am (UTC)The meds are getting reduced as fast as we can cope, but that means coping with the *symptoms* as well as withdrawal effects etc etc so it's pretty hard unfortunately :/ It's not so much the uncomfortable that bothers me it's the reduction of functioning ... I have so little already. And as you can see above removing just 3 meds has caused this huge cascade of new symptoms that's hard to deal with :(
no subject
Date: 2012-06-16 10:22 pm (UTC)i wish your health were an Etch-A-Sketch, so i could just shake you very gently and make everything go back the way it's supposed to be...
*hug*
no subject
Date: 2012-06-17 01:05 am (UTC)Etch-a-sketch sounds like it'd be nice :/
no subject
Date: 2012-06-17 02:52 am (UTC)once i figure out a way to upgrade the meatware, you'll be my second customer, after myself...
no subject
Date: 2012-06-16 11:09 am (UTC)That is awesome about your foster kitten.
no subject
Date: 2012-06-16 11:15 am (UTC)no subject
Date: 2012-06-16 11:29 am (UTC)But yay Tammy! :D
no subject
Date: 2012-06-17 01:05 am (UTC)no subject
Date: 2012-06-17 01:06 am (UTC)no subject
Date: 2012-06-16 12:44 pm (UTC)Yay kitten!
no subject
Date: 2012-06-17 01:06 am (UTC)Hope you find a good HR monitor - I gave up in the end, what I need doesn't actually exist yet.
no subject
Date: 2012-06-16 07:16 pm (UTC)no subject
Date: 2012-06-17 01:06 am (UTC)Perhaps a paddle wheel? Those always seem romantic somehow...
no subject
Date: 2012-06-17 01:16 pm (UTC)no subject
Date: 2012-06-16 07:53 pm (UTC)I'm glad your kitty is making progress. That is amazing and shows that you're really doing things right with her. <3
no subject
Date: 2012-06-17 01:07 am (UTC)no subject
Date: 2012-06-16 08:39 pm (UTC)Good on Tammy! All of my cars were either feral when we got them or were born to ferals, so I've seen some of that behavior before but not quite that extreme. I'm glad that she has you to show her how good life can be :)
no subject
Date: 2012-06-17 01:10 am (UTC)I'm so relieved that she's improved too - at the start I was afraid that either I couldn't do it or she was too sick and that was too hideous to contemplate. Once she started improving it was amazing ... it still is amazing, she hops up on my bed and sits on my chest and headbutts me to ask for petting now! That's cute from any kitty but it's flat-out amazing from this one :) I feel like a proud Momma :) :)
no subject
Date: 2012-06-17 01:31 am (UTC)no subject
Date: 2012-06-17 01:48 am (UTC)no subject
Date: 2012-06-17 04:58 am (UTC)We're glad for the good news. Would you mind describing your foster kitten for me? I think you might've for someone here, but I cannot be sure. And I am so glad she's less afraid now. Poor girl. Pet her for me please?
<3
-River
no subject
Date: 2012-06-17 05:09 am (UTC)Tammy the foster kitten is gorgeous, she's very fluffy - I think it's called medium-length fur but it's about an inch or two inches long, with some weird longer whispy bits in her tail. She's 15 months old so she's still pretty small sized but mostly looks like an adult. She's black and white, with mostly white paws and a white nose and a lot of white on her tummy - on her back and head and the base of her tail is mostly black. Her fur is very soft and fluffy feeling too, it's a bit like putting your hand in cotton wool when you touch her!
Love and hugs to you,
r
no subject
Date: 2012-06-17 09:46 am (UTC)Sorry I'm not more here... Hope the mast cell thing is sorted out soon. *offers hugs*
no subject
Date: 2012-06-20 12:35 am (UTC)no subject
Date: 2012-06-17 09:59 am (UTC)Your kitten reminds me of my Marie - after two years she's at a point where I can touch her most times and she'll even jump up besides me to ask for pets, but she'd never walk over me or lie on my lap or anything like that. Maybe in another two years :)
no subject
Date: 2012-06-20 12:35 am (UTC)no subject
Date: 2012-06-17 09:43 pm (UTC)Sounds like you are a wonderful cat mama, and perhaps you need to go to kitty rehab and find a fabulous elephant to improve your health. (Just being silly.)
Breathe in, breathe out.
no subject
Date: 2012-06-20 12:36 am (UTC)Breathing is good. Hugs are good. Tea is not my thing but I hear it's good for those who enjoy it :)
BTW Tunisian Entrelac blanket is due to be a baby blanket I think - you left a comment on flickr.
no subject
Date: 2012-06-22 07:13 pm (UTC)This sucks.