All I want for Christmas is good news! (and less stress)

[DRunnerchick]

Merry merry and a HoHoHope you all are cruising through this holiday season with no worries and only good things coming your way!🌟✨🤞🏼🙏🏼🎁🍫☕️🕊

I’m struggling a bit with the cold weather setting off more than my usual share of muscle spasms and cramps. Every day feels like I ran a marathon yesterday, but without the satisfaction or training to back it up. SPS just hates me. My brain hates me too. Headache is still here…almost to day 200 straight. I take back all the things I ever uttered about wanting to be special. When you are a flipping glitter farting unicorn 🦄, nobody knows what/how/how much of anything to treat you with because they can’t even figure out what is broken.

My daughter who lives with me, and shares the load but also has her own burdens (CRPS - bilateral lower limb, ASD, migraines etc) has become quite ill in the last few weeks. She asked for an appointment (we are at some clinic) and got a video appointment with my GP a couple of weeks ago. Labs were ordered. There were several abnormal values that were concerning, that were brushed off. She was referred to the human performance lab for testing (which is tomorrow) and the Dr sent an email to her GP regarding the continuing cramping she’s having while running and the hypocalcemia and they agreed to send her to neuromuscular (Nobody read the chart because her neurologist already sent her there for drop foot and she is already on a calcium supplement 🤦🏽‍♀️🤷‍♀️) Her Anion gap was tanked and her ferritin was lower than mine but her Hb and Rbc were on the higher end. . I don’t need all of those to know she’s sick. She’s decreased her mileage from 45-50 miles/wk to 3 or 4. Even at that, her heart rate is going up to 200 bpm. Something is not right!! Ten years ago, a neurologist thought she had cyclical Cushings Disease and said it was extremely hard to find and took about 10 to 12 years for patients to get diagnosed. I wonder 💭. I don’t know 🤷‍♂️ I just hope someone takes the time to actually look at the patient and look at the chart and ask the right questions to find out.

All of this is stressing me out. Usually, we help each other, but we’re both a bit rough around the edges. Thank you so much for letting me vent.😘

D🏃🏽‍♀️

[StriatedCaracara]

Nice Christmas tree🎄❄️

I used to do endurance sport, still swim sometimes (had a 'one week membership' a few months back - it was great finding I could still swim lanes - then too scared to go again with the pandemic).

Did a couple of marathons in my 20's. Was 24th lady in Birmingham marathon once...

Part of my life was sport. Now I'm ancient and unwell I can't run.

I'm playing golf now it is cloudy, it is slow paced.

A little local private club around the corner so no club house etc.

Cost is reduced and I can suspend membership in the summer.

Yesterday played - it hurt under my ribcage as I struggled around but it helps my joints so much. I'm not competitive and have no golf handicap - just like the walk really.

I've been getting extra bloods done, and watching clips, to understand everything that comes up. This is helping me understand which bits in 'the scheme of things' are broken.

Hope you and your daughter find the answers you need. Liking sport maybe gives me a determined attitude - it's transferable.

It has helped me to think of it as 'running a marathon' every day. Will remember this one. Thanks for sharing. 🍰💐

[DRunnerchick in reply to StriatedCaracara]

No answers so far. She was given his cell phone number to call yesterday during his break when he would have her lab results. She got his voicemail. He called back and said he had to finish with a patient and would call her back. He didn’t. Only her pretest ammonia has been released to the portal and it is 33% out of high normal. .More waiting 🙆‍♀️ Too tired to do much of anything else.😘🤗✨D🏃🏽‍♀️

[StriatedCaracara in reply to DRunnerchick]

Please keep getting back, chase the results etc. Are there different ways, different people you could involve to get the results. I sometimes feel guilty of going another way - but it has worked a couple of times recently.

Rest up too The hardest thing I find is dealing with delays psychologically, as we would not treat others like this. I now have colouring in sheets, near phone as can wait hours / days and, when I'm there, all I can do is muster up the enthusiasm to do some coloring. Not getting a response makes me feel low. So I 'chase and wait' and colour in - trying to focus on something that is easy. I'm also taking up the curtains, but this is too draining when I'm near the phone. Just having something to focus on alongside helps my head.

Somebody in my block of flats has caught 'covid for Christmas'. Not sure which direction the coughing is coming from, but they are coughing so much. It is such a strange difficult time and so much is not right.

Take care. Hang in there. 'Go for gold' every day.🏆🙏

[DRunnerchick in reply to StriatedCaracara]

I love CaraCaras btw. My daughter was wise enough to make an appearance the GP clinic to follow up as soon as she made the specialist appointments. It kind of guarantees nobody gets to drop the ball. She’s been there, done that. She’s been plagued by illness since she had H1N1 (swine flu) Fall ‘09 when her Uni X-country team all got it on a road trip but she never really recovered (similar to long Covid perhaps?). She suffered seizures early on and muscle weakness that left her in a wheelchair for a almost a year.

She battled back, determined to get back to her nationally ranked team. She repeated to walk, run and then get a Lis Franc fracture in first thru fifth rays in her foot which left her with Complex Regional Pain Syndrome (CRPS). That was 8 years ago. It has since mirrored to her left side and spread. So it is bilateral lower limbs, type 1. There are NO known athletes who return to play competitively. She decided that since all the “experts” said it couldn’t be done, that we would write the protocol.

She has been back running for 2 years and has been running competitively in races (although the pandemic has not been great for that) when possible and has PR’d (post CRPS) every single race. We have 2 years of data. She’s a whack of a lot faster than me too! Even than

I will ever be. But, then something changed 4 weeks ago and she had to decrease her mileage by 90%🤷‍♀️

One way or another, she’ll get some answers on Monday. She’s not seeing her doctor, or mine but actually one who is more senior😂😂 I hope she’s ready for it. Have a good feast of your weekend. We are supposed to get snow ❄️ tomorrow. Yippee- not.✨🎄🎁

D🏃🏽‍♀️

[honeybug]

🤗♥️🥰🙏🕊❄️☃️🎄🎁🎅🤶🦌👼🙏🙏🙏🙏🙏🙏🙏🙏

[Hidden in reply to honeybug]

More icons please 🤣🤣🤣

[DRunnerchick in reply to honeybug]

Thank you Honybug! 😘

[Hidden in reply to honeybug]

New icon for today is a 🗿Your turn…….

[DRunnerchick in reply to Hidden]

Well, since there were already “impossible” results (he had to run his equations 4x to make sure he had the right inputs etc. 💉🩸🧬🔬📱 We wait for the pretext and post test lab results. She was given his cell# to call tomorrow between 12:00-1:00 (after a.m. appointments, during his “break”) 👨‍⚕️

[honeybug in reply to Hidden]

I thought you were kidding 😂…🗽Can send a collage if you’re interested. 🤗

[Hidden in reply to honeybug]

🤣🤣

[honeybug in reply to Hidden]

❄️☃️❄️☃️❄️☃️❄️☃️❄️☃️

🤗♥️🤗♥️🤗♥️🤗♥️🤗♥️

🙏🕊🙏🕊🙏🕊🙏🕊🙏🕊

🎄🎁🎄🎁🎄🎁🎄🎁🎄🎁

🎅🦌🎅🦌🎅🦌🎅🦌🎅🦌

🌿💐🌿💐🌿💐🌿💐🌿💐

🌸🦋🌸🦋🌸🦋🌸🦋🌸🦋

🌎🌟🌎🌟🌎🌟🌎🌟🌎🌟

💫🌍💫🌍💫🌍💫🌍💫🌍

🌈💦🌈💦🌈💦🌈💦🌈💦

❄️☃️❄️☃️❄️☃️❄️☃️❄️☃️

🥰♥️🥰♥️🥰♥️🥰♥️🥰♥️

[DRunnerchick in reply to honeybug]

Magnificent!

[honeybug in reply to DRunnerchick]

Thank you D. 🥰🙏🕊

EJ

[DRunnerchick in reply to honeybug]

But of course!🍯🪲😘✨🤗

[Pumpkin2009]

My heart goes out to you and your daughter. The stress must be unbearable at this point. There needs to be doctors who are not afraid to look outside the box and be detectives.

Healing and hopeful hugs.

[DRunnerchick in reply to Pumpkin2009]

Thanks Pumpkin! I hope you are doing your best. Enjoy all the shiny things and “your “ shiny people. Remember to tell them you love them and hug them while you can. A person needs 12 meaningful touches a day to stay healthy. Make it your mission! 🙌🏼🖐🏼🤗😘🌻🎄🍀

[Hidden in reply to DRunnerchick]

If I need 12 meaningful touches I’m going to need a lover 🤣

[DRunnerchick in reply to Hidden]

Or a good dog who nuzzles well 🐕😂

[Hidden in reply to DRunnerchick]

😆😆😳

[Hidden]

I’ve found the best way to avoid stress is not to get up in the morning 🤣😂🤣

[DRunnerchick in reply to Hidden]

Alas, there would be nobody to drive her to her appointments (she doesn’t drive right now with the CRPS and intermittent drop foot issues) and there would be NO coffee ☕️. What? No coffee? No!🙀🙀🙀

[Hidden]

Hugs to you both

[DRunnerchick in reply to Hidden]

Thanks SD! Back atcha! She has to fast for 4 hours before the test today so I just fed her second breakfast 🧇…and more coffee ☕️

[MrsMarigold]

We do need all that plastic as you are referring to the tree🧐. It’s a happy thing. It’s a Christmas thing. Sick people need plastic blood vials, plastic tubing, plastic bandaids, plastic bedpans, and plastic ventilator parts and plastic plastic 😯not sure if any of it is recycled or not or if climate change is actually responsible for Covid. Christmas is recycled. Every year on December 25. Merry Christmas, Titters

[Lupusrelative in reply to MrsMarigold]

Love it!

[DRunnerchick in reply to MrsMarigold]

The tree is from the 1960s- see previous remark. Recycled many times over.

[happytulip in reply to DRunnerchick]

Its a lovely tree. Means a living one hasn't been cut down, stuck in a pot for two weeks and then been burnt on a bonfire. What a waste of a living thing. Reusing a tree is a brilliant idea x

[MrsMarigold]

Christmas tree is gorgeous. Sparkles. Here’s wishing you and your daughter a marathon long and well deserved Merry Christmas and Happy New Year. Prayers all around. You are a VIP very special personLol as you know with all your medical terminology abbreviations 😂. Much love

To you and daughter in that chilly part of the world♥️🌺 Titters

[DRunnerchick]

I try to educate 🤷‍♂️Old habits are hard to break. I charted back in the old days when we used carbon paper in triplicate and had to destroy the carbons. 😂😂😂 Of course, there is more and more known and to keep up on and more that I don’t know. Like, I just found out that if you have two parents who are allergic (genuine) to penicillin, there is an allele that will show in offspring. It also, exponentially raises their chances of getting an autoimmune, specifically psoriasis or rheumatoid arthritis. Fascinating stuff.

[Hidden in reply to DRunnerchick]

That’s interesting!

[MrsMarigold]

Agree a lot of fascinating stuff and unchartered autoimmune galaxies 😂🎄x

[DRunnerchick]

cell.com/ajhg/fulltext/S000...

This is the link to that study if anyone is inclined to read it. I found it especially interesting given that both my ex and I both are allergic to penicillin. He has psoriasis and although I was originally diagnosed with sero-negative RA, it was later changed and now I have been diagnosed with several less common, and even rare autoimmune diseases. So, we are typical and probably have the same positive markers. Sad for our kids. Pretty soon, Tinder will have a genetic probability compatibility section.😂

[Hidden in reply to DRunnerchick]

Just cancelled by tinder entry 🤣🤣

[DRunnerchick in reply to Hidden]

I’d rather be single anyway! Life is like a box of chocolates…👀

[Hidden in reply to DRunnerchick]

Yes, fed up with soft centres 😂

[MrsMarigold in reply to DRunnerchick]

Well was very interesting read but as AVHP(A very honest person)😀 I did kinda skim it

In a very gentle but rapid way or GRW. GRW is how I’m reading many things autoimmune these days. I’m BOM. Bored of myself. 😂. I think getting diagnosed with another and rare autoimmune disease just has me wanting to violate science and eat more dark chocolate or EMDC.

On a serious note, I’m really sorry for you

And your daughter. I can very much relate as my own children all grown each show

Autoimmune symptoms. Plz feel free to rant on that or any links you want to share on parents of passing on great inheritances

Or ranting😅. 🎅🎄🎄🎄

[CecilyParsley]

How can you read a post that is so emotive that your heart aches and come up with a question about bloody plastic ?????

[CecilyParsley]

I am so sorry that life is so stressful for you. I have no clue on your daughter’s medical problems but I can and do send you huge Cwtches and lots of love. Your tree is so pretty and who doesn’t love a tinselfarting unicorn? Xxx

[DRunnerchick in reply to CecilyParsley]

Thank you CP. we shall have some answers today. This year, we have already scaled the holidays accordingly. Two more appointments before Christmas. ✨😘🎄🎁🤗

[CecilyParsley in reply to DRunnerchick]

Good luck lovely xxx

[stiff19]

Glad to see you venting, I think it helps 🙏 all best wishes to you and family at Xmas and all times 🌲 your recycled tree is lovely 👍 🤷‍♀️.We all live in hope 🙏 every days a marathon 🤔 at least were running together

Take care 🤗

[DRunnerchick]

All days are good. Some days are better! Have a wonderful holiday season Stiff!🤗😘✨🎄🎁