Friday Five!

That’s the thing. Palliative care is not only about end of life, but about quality of life.

Would they refer palliative care for EDS?  That’s the bigger issue, maybe… It’s certainly complex needs, so in my mind , it fits….GP’s mind? Who knows….

I've asked and that's a solid no here, but in the US it's not a problem at all and I have many friends in palliative care. My aunt died just a few years older than I am from aneurysms, we don't get clocks. If that's going to be the outcome for me I'd like to at least be comfortable!

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I've asked and that's a solid no here, but in the US it's not a problem at all and I have many friends in palliative care. My aunt died just a few years older than I am from aneurysms, we don't get clocks. If that's going to be the outcome for me I'd like to at least be comfortable!

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I’m so sorry.  I wonder if you call Sue Ryder directly if they could offer any advice. Possibly key words to say to your GP to get you access.  I was referred by my oncologist NOT my GP, so I suspect anyone you see could make a referral.

It’s worth a shot and I really hope you can get the support you need.

Happy Friday!!!

1.) Storm Otto kept me awake all night!   

2.) Have some beer entered into a competition this weekend

3.) Weather supposed to be pants all weekend... Probably lots of cleaning then....

4.) Busy times ahead! Lots going on!   

5.) Need to do some trombone practise this weekend.   

Friyay!

1.  Much better week this week.  I made the decision last week to ask my GP for antidepressants.  Not just for menopause hormones but because I was just crying all the time.  I can't believe what a difference they've made.  I genuinely didn't know that a pill could provide such relief.  I have zero issue admitting that the last six months have been too hard to handle without a bit of help.

2.  I had the review of my scans with my oncologist yesterday.  Everything is improved (remember, no measurements in these reports).  The scans did show that I've recently broken my right hip (more pelvis in the groin area).  Shock to me!  Zero pain.  I've been told it's fine to walk on, just avoid any "twisting activities".  Been hoping to start some yoga or pilates and she said that's fine to do, but speak with the instructor and likely focus more on upper body or things with non-twisty legs.

3.  My pleural effusion is still large even though it's smaller than it was.  I've decided to ask to be admitted to hospital to have the chest drains to completely dry the chamber out and then do the talc in hopes the lung sticks to the chest wall.  If the respiratory consultant says I'd be better with the catheter, I'll follow their recommendation.  But as my body IS eliminating the fluid, there's just so much there, I think it needs to be drained dry.  Then hopefully it'll stay that way.  I know the last estimate was 2.5 liters remaining.  I'm sure it's less now.  But likely 2 liters or so.  Time to just have that DONE once and for all (God willing).  REALLY hoping I can have this done before our trip to the Arctic Circle but that's less than 4 weeks away.  Fingers crossed.

4.  I have THOROUGHLY enjoyed this week - it's half term and my kids are off school.  We've done loads, though we took Wednesday to rest.  My kids...  ugh...  I kept saying, "You guys, I literally had surgery on my spine less than a week ago.  Mommy NEEDS TO SIT TODAY."  LOL.  Yesterday we went to Longleat Safari Park which I had not been to before.  We LOVED it.  We knew NOT to take our car through the monkeys.  My husband thought I was being dramatic and silly.  Until I started pointing to all the cars with broken windshield wipers.  Glad we weren't one of those cars. 

5.  More fun planned for the remainder of the weekend, including a nice meal out tomorrow night to celebrate this part of my journey being finished (more or less). 

Bonus - Our patio was finished.  We had the remaining patio slabs put down and then a bazillion tons of dirt to raise the grass to the height of the patio (patio is higher as we now have flush entry/exit into the house.  I knew it would look good, but didn't realise it would look as good as it does!  Really makes a huge difference.  Also didn't realise the quote included turf so another good surprise.  They also put dirt down on the front half of the garden that was used for the extension and had concrete and all sorts on top of the soil.  We've spread seeds there.  It's all coming together.  If Tapatalk ever lets me back in, I'll post some photos.

1.  Much better week this week.  I made the decision last week to ask my GP for antidepressants.  Not just for menopause hormones but because I was just crying all the time.  I can't believe what a difference they've made.  I genuinely didn't know that a pill could provide such relief.  I have zero issue admitting that the last six months have been too hard to handle without a bit of help.

Glad you're feeling better and that things are looking up .

It's been the same for me with antidepressants. I've been on them just over 3 months and I feel so much calmer and able to deal with stress now, and I've barely felt like crying at all (other than last weekend... but it was the 1-year anniversary of losing my dad, so it was to be expected).

I haven't posted for ages, but my Friday Five:

1. As mentioned above Fri 10th marked 1 year since we lost my dad suddenly. I was on-call for work, so I wasn't able to get home to my mum, but I kept myself busy and tried to eat some of his favourite foods.

2. We had a lovely family holiday to the Algarve and Lisbon between Christmas and New Year. It was great to get away somewhere warm for a few days and to have some time to relax and rejuvenate.

3. I have almost 2 weeks off starting today. I'm finally heading to Italy next week for the trip that was originally booked for May 2020! I also have further trips to Germany, Italy (again) and Switzerland between May and July .

4.  We're starting to plan my 40th birthday trip to Australia and New Zealand in January 2024. My birthday is actually in 3 months but we want to go to the Australian Open tennis, which is in January, so the trip will be a few months late. I've been planning to go since my 30th birthday, as I try to go to a big city for each big birthday (so far, I've done London, New York and Paris), and Australasia is the only continent that I have not been to yet, so Sydney/Melbourne was the obvious choice.

5. I also may have booked myself another trip to Disney World in November. I'm staying at a Disney resort this time, for 10 nights - I really wanted to stay at the Polynesian Resort, but it is very expensive, so I ended up booking the cheapest hotel instead (All-Star Music)... but then I realised I could switch hotels mid-trip, so I decided to splash out and spend the last 4 nights at the Polynesian .

Haven't been on for ages (got logged out of the forum at one point, forgot the password to get back in, and forgot the password to the associated email account...and going through the process of resetting everything from scratch and/or digging out my password book - hidden so well, I hid it from myself - was a genuine obstacle), but here's my belated Friday Five.

1. Just had a lovely week in Dorset with DH. I have a nice small fossil collection now, and fossil hunting is now my favorite stay-cation activity. I wish I could have had more days on the beach to search for even more. I was only able to mange 2 half-days which was a triumph for me. (admittedly, my body is making me pay the painful price now, but it was worth it for those ammonites!)

2. This is a bit belated as well, but finally got the actual physical letter in the post that I've been awarded PIP. It was majorly delayed due to the postal strikes. I had the text by phone, but for my peace of mind, really wanted that physical official letter I could actually hold in my hand. I could go on and on about the process of applying (and how terribly dehumanizing it is), but I am relieved that I was successful first try without having to escalate to mandatory reconsideration or tribunal. I had been mentally preparing myself for a rejection, and having to stress out over months/years of fighting for the decision to be looked at fairly. Incredibly relieved I don't have to go down that path right now.

3. I had been somewhat prepared for this as my doctors had been giving hints, but have been newly diagnosed with a neurological condition that presents like MS and/or Parkinson's. Even though I knew it was likely coming from the little hints I had been getting, it still feels devastating. I likely had a predisposition to it, and the physical stress of the COVID infection triggered the rest. I've been told that I'm not alone; many neurologists are seeing similar patients where COVID seems to be a common denominator for triggering some kind of neurological disorder. So, I guess that's a little reassuring. Maybe?

4. After our fur baby crossed the rainbow bridge in 2021, DH and I now have four new fluffy additions to the family! Little fluffy babies full of beans. Oh my gosh, they are FULL of beans. And cuteness. 

5. Starting to look into getting bits to upgrade my gaming rig. This time, I think I'm going for water cooling!

5. Starting to look into getting bits to upgrade my gaming rig. This time, I think I'm going for water cooling!

  My 15 year old boy just set up water cooling on his.  At first I was dead set against it, thinking it would be messy, expensive and unreliable.  He bought one anyway, and it was really no big deal.  Works like a charm and looks very cool.  Completely sealed. 

Good luck with your health!  I'm sending you a virtual clap for your sacrifice to the NHS.

4. After our fur baby crossed the rainbow bridge in 2021, DH and I now have four new fluffy additions to the family! Little fluffy babies full of beans. Oh my gosh, they are FULL of beans. And cuteness. 

Need baby bean photos!

I wish they were passing info to GP's about the new neurological presentation, I know so many people fighting for care right now (myself included). It's been like living with a severe concussion for 3 years for me, non stop, and rest is the only thing that keeps me half-functional. Very very happy you were approved for PIP in one go though, that's on my list after ILR.

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Happy Friday a few hours late. (Hey, I've been sleeping!)

1) Have been down for the better part of two weeks with what started out as a tickle in the throat, then two days later turned into a screaming sore throat, then two days later hit my lungs. Went for two Covid tests, since the latest variant does not always show up on the "at home" tests. Negative. Just-a-bug. That left one of my eyes swollen almost shut as well as me coughing up a lung every few minutes for several days.  Went to urgent care, got some antibiotic eye ointment, much better now. Have spent the last week trying to see with an eye full of the equivalent of vaseline with antibiotics in it. Didn't hurt, looked horrible! Seriously, swelled from under my eyebrow down to pretty much even with the end of my nose. Very disconcerting. Just on the one side, though. Doc thought it might have been staph.

2) PSLF has finally erased my student loan debt. That I've been under since 1988. I'm freeeeeeee!  I turned in my notice at work, unofficially. Told them to not expect me to be there by this summer. They are critically short-staffed so I'll stick around for a while.

3) Daughter starts spiffy new professional level job in about 10 days. Remote for three months, then back in California for 9. Massive road trip involved - there was a time when I would have gone "woo hooo" about a road trip that long. But six days of 10 hour days driving just doesn't sound as much fun as it used to when I was 50 years younger. 

4) It has been in the upper 50Fs here for the better part of the last week. I finally felt human yesterday and thought it might be nice to go to the garden to check out how the garlic we planted last fall was doing, and start tidying up for spring planting. Noooo - yesterday we got a cold front through that dropped it to sub-freezing with a wind out of the NW that had all the flags flying straight out. Sigh.  I'd be a Nan-cicle if I went over there today, and with still recuperating from whatever bug I caught it's probably best to just stay home and look at seed catalogs. There are some really cool new varieties of flowers out this year.

5) Went to the urgent care up the street instead of waiting to get in to my GP for the eye thing. Was REALLY impressed with the doctor there. Great relief to have a doc so close who's so competent. They even phoned the next day to see how I was doing. And the next!  We're not sure how I picked up the lung thing, but the eye thing he said he was pretty sure was a "contact" infection - I got it on my hands and must have rubbed my eyes. Very thorough guy, even gave me an eye exam to make sure it wasn't messing with my (somewhat wonky anyway) vision. Old ex-military doctor. (Figures! Every one of that ilk I've ever seen over the years has been stellar.)

Comments on other posts:

Fossils are good. Love fossils.
Lots of things Covid has been causing to happen - a lot of cardiovascular and a lot of neurological nightmares. Almost completely being ignored by those who should be warning us to be watching for signs.... and organ impairments.
Glad PIP finally came through.

So sorry furbaby has gone.

Cool on water-cooled machines. Made me remember back when I was a mainframe operator, the big industrial IBM mainframes that were water cooled and took up like a city block. I do miss those days - great pay for running those!

Hard when the anniversary of the death of a close relative comes around. My grandmother's been gone since I was 25. The first week of June every year always sees me a little weepy, remembering her passing, for a bit. Still. All these years later.

Good luck with the beer competition!

Tranquilizers can be a gift from the Gods. So glad you were able to get them, to get you through the tough spots.

  My 15 year old boy just set up water cooling on his.  At first I was dead set against it, thinking it would be messy, expensive and unreliable.  He bought one anyway, and it was really no big deal.  Works like a charm and looks very cool.  Completely sealed.

I've been hesitant about water cooling mine for the exact same reasons, but seeing so many others doing it without issue and reading various guides and how-tos, I think I'm ready to give it go. It does look very cool, and there are some AMAZING setups out there.

No lies though, part of me is terrified I'll mess up the fixings and get a leak - and there goes that graphics card. But nothing ventured, nothing gained!

Good luck with your health!  I'm sending you a virtual clap for your sacrifice to the NHS.

Aw, thanks. I've been doing desk work for a while now (protocol reviews, audits, etc.), but am hoping I might be able to get back to more practical work in a few months if OH deems it safe for everyone. That research won't research itself.

Need baby bean photos!

Will post as soon as I get some good ones! They are little motion blurs at the moment! Even when sleeping, as soon as I get near, they start jumping and running about.

I wish they were passing info to GP's about the new neurological presentation, I know so many people fighting for care right now (myself included). It's been like living with a severe concussion for 3 years for me, non stop, and rest is the only thing that keeps me half-functional.

The knowledge is certainly lacking. Papers are reporting huge increases in sequelae; however, that doesn't seem to be getting through to GPs. Or, from what some online support groups are saying, even to Long COVID clinics themselves. I had (possibly misplaced) high hopes that wouldn't happen.

Very very happy you were approved for PIP in one go though, that's on my list after ILR.

I'm not an expert on it, but if you have any questions about it, let me know and I'll be happy to tell you anything about the process as I experienced it. I found it very daunting and probably would not have gotten through it myself without speaking to others who had been through it before (if you're on FB, I found a group that was very supportive and helpful, and would be happy to share if you were interested).

When you do apply, I hope you get approval without having to fight, and it's at an award level that you deserve. *hugs*

Have some beer entered into a competition this weekend

Oooooh, good luck with that!!! *fingers crossed*

Have been down for the better part of two weeks with what started out as a tickle in the throat, then two days later turned into a screaming sore throat, then two days later hit my lungs. Went for two Covid tests, since the latest variant does not always show up on the "at home" tests. Negative. Just-a-bug. That left one of my eyes swollen almost shut as well as me coughing up a lung every few minutes for several days.  Went to urgent care, got some antibiotic eye ointment, much better now. Have spent the last week trying to see with an eye full of the equivalent of vaseline with antibiotics in it. Didn't hurt, looked horrible! Seriously, swelled from under my eyebrow down to pretty much even with the end of my nose. Very disconcerting. Just on the one side, though. Doc thought it might have been staph.

Sounds horrendous, but glad to hear that it started to resolve with the antibiotic treatment. Still though. Not nice.

PSLF has finally erased my student loan debt. That I've been under since 1988. I'm freeeeeeee!  I turned in my notice at work, unofficially. Told them to not expect me to be there by this summer. They are critically short-staffed so I'll stick around for a while.

Woohoo!! Enjoy your freedom!

Daughter starts spiffy new professional level job in about 10 days. Remote for three months, then back in California for 9. Massive road trip involved - there was a time when I would have gone "woo hooo" about a road trip that long. But six days of 10 hour days driving just doesn't sound as much fun as it used to when I was 50 years younger. 

I've never done a proper road trip, and I feel that I need to get one in before I'm too old to enjoy it. I think the most I've ever driven is from New York to Maine. Which I'm sure is nothing for southerners. That's probably not even a single state for some.

Great relief to have a doc so close who's so competent.

Yay, but a bit of a sad sentence to read at the same time. But overall, sounds like a win.

As mentioned above Fri 10th marked 1 year since we lost my dad suddenly. I was on-call for work, so I wasn't able to get home to my mum, but I kept myself busy and tried to eat some of his favourite foods.

Sorry to hear. *hugs* Anniversaries of those sorts of things are tough. I think it's lovely that you honoured him by eating some of his favourite foods. I do the exact same thing with foods my grandpa loved and cooked for me when I was growing up.

It was great to get away somewhere warm for a few days and to have some time to relax and rejuvenate.

Glad you were able to do so!

I have almost 2 weeks off starting today. I'm finally heading to Italy next week for the trip that was originally booked for May 2020! I also have further trips to Germany, Italy (again) and Switzerland between May and July .

Safe travels, and hope you have a fab time!

We're starting to plan my 40th birthday trip to Australia and New Zealand in January 2024. My birthday is actually in 3 months but we want to go to the Australian Open tennis, which is in January, so the trip will be a few months late. I've been planning to go since my 30th birthday, as I try to go to a big city for each big birthday (so far, I've done London, New York and Paris), and Australasia is the only continent that I have not been to yet, so Sydney/Melbourne was the obvious choice.

Have fun planning!!

(No lie, DH is scared of Australia.)

I also may have booked myself another trip to Disney World in November. I'm staying at a Disney resort this time, for 10 nights - I really wanted to stay at the Polynesian Resort, but it is very expensive, so I ended up booking the cheapest hotel instead (All-Star Music)... but then I realised I could switch hotels mid-trip, so I decided to splash out and spend the last 4 nights at the Polynesian .

Have fun!! I love Disney World; hoping I might be able to go for my 40th in a few years.