Absolutely livid at this disgusting attempt at journalism. I am seething that this sort of tripe is allowed to be published in a national newspaper - such irresponsible and damaging reporting. I’ve written to The Times with an official complaint. Someone needs to remove this vile ‘journalist’.
Edit: petition
Do Limited Quantity, Astral Reward Items reset when the Special Objective Timer resets?
Cane/Rollator hack >Medical Alert Tag, for safety and Emergency situations.
> I need a cane and rollator for many reasons. (POTS reasons listed first) Orthostatic Intolerance, Syncope, heat-related exhaustion, dizzyness/vertigo, chronic tachycardia...Widespread chronic pain, chronic fatigue, leg and arm muscle tremors+weakness (also creating its own Fall risk.)
You likely know of medical alert- tags, bracelets, necklaces, watch bands.
> I had the idea to use this silicone engraved tag on my cane and rollator! https://a.co/d/00c3xOBe This company makes a few different ones sold for Watches others for dog/cat collars. I ordered this tag designed for service dogs/ 'medical alert' dogs ~Because the ones for they make for people/ Watches dont have the medical sign or say Medical Alert. (This would also work on/for people's Belts and Purse straps.) Heres a link to the product. I got the XL size. And another one in a L size for my back pack strap.
> I do not have my name on this. I have my 2 most "Emergency-Relevant" medical conditions; (cardiac) "LoopRecorder Implant" and "Convulsive Syncope". My hospital of choice. & My emergency contact #. You could do anything. Id have added my allergy if they had another line.
Heres a link to my Imgur acct. with the photos of my cane+tag and an example photoshoped on my rollator. https://imgur.com/a/O4vxxQY
This can adapted for a Rollators and even wheelchair handles. My photos show a photoshoped example of it on the bar, but the tag could also go on the handle poles, if your handle poles can be temp. detached from the frame, because the tag will not strech over the handle itself.
*be safe out there*
You likely know of medical alert- tags, bracelets, necklaces, watch bands. (3 photos on this post)
I just had the idea to use this silicone engraved tag on my cane! This company makes a few different ones sold for Watches others for dog/cat collars. I ordered this tag designed for service dogs/ medical alert dogs ~Because the ones for they make for people/ Watches dont have the medical sign or say Medical Alert. (This would also work on/for people's Belts and Purse straps.) Heres a link to the product. I got the XL size. And another one in a L size for my back pack strap. be safe out there
Edit* I do not have my name on this. I have my 2 most important medical conditions, my hospital of choice and my emergency contact #. You could do anything. Id have added my allergy if they had another line.
I'm planning on making (art) a carved/pressed Lino cut/Block Print of my Xray. I was wondering if anyone had any tips on how I can print the xray out on a large office printer and the bones be as close to normal human body scale. Im wanting to print my C6 to my L6. (Yes I have a L6 and a T13 with 2 complete T13 ribs.)
Hi, I have 2 brown garden snails both 5 months old. They live in the same enclosure. One of them has been burrowed for a month now. The day after the US started that week long heat wave. The other snail also burrowed that day but came back out after that week was over. I dont know why my other snail has stayed burrowed, I'm starting to worry. The temp is 77° and the humidity is around 80%, steady stats since I got them at 1m old (besides the week long heat wave bring the temp to 83, and Id take their lid off) The 1 snail is happy and has grown double it size just these last 2 weeks. Double the size of my burrowed snail. I have tried to wake my snail up twice in these last 3 weeks. They went straight back to burrowing.
The temp/humidy are good and steady. The enclosure is 3 gallons, healthy bio active. Good ventalation. The food, protein and calcium are great. The other snail (Mochi) is happy as can be. Idk whats going on with my other snail (Jazz). Should I stop trying to wake em up? Theyre going on 3 and a half weeks burrowed, I hope its not sick.
Last week, I brought home my latest ECG. They printed it straight from the machine. Today I was notified my test result was uploaded into MyChart app. I went to see what test it was. I saw it was ECG and that my electrophysiologist edited the results of my ECG machines graph/print-out, *electronically* before he uploaded it to mychat.
My copy says Abnormal ECG, right atrial enlargement. He edited that out from his uploaded graph copy. We discussed the RAE in my appiontment and we talked about P waves and how I'll get a second (already had 1) echocardiogram at the end of this year to keep monitoring my hearts structure.
Then he goes and removes the results? Why?
I have a handful of heart problems and just got a ICM/Loop Recorder put in. I understand if the results didnt concern him enough for him to leave it on my EKG graph/chart. But he could at least say there were P wave changes or something instead of taking it away alltogther. It must be important enough* because we had a conversation about it and confirmed that I'll be needing another Echo.
He should have notated something even if he didnt think it was important enough to leave on there.
Is this even legal, to change the graph/chart printout itself?
Edited/Updated post body for acuracy
Prior text: "I have 3 extra bones. Bilateral C7, Cervical Ribs with comorbid L6 verterba. (I also have Kyphoscoliosis and Lordosis)"
Update: Whats more likely to be accurate is me having 4 extra bones. 7C/13T/6L. With the extra bilateral ribs at an additional thoracic vertebra at the bottom thoracic not the bottom cervical. As someone else mentioned, I see I labeled the image wrong. Starting with what I thought was the bottom ribs at T12- But is really the extra T13. Meaning what I marked as C7 is really T1.
Edited/Updated post body for acuracy
Prior text: "I have 3 extra bones. Bilateral C7, Cervical Ribs with comorbid L6 verterba. (I also have Kyphoscoliosis and Lordosis)"
Update: From what I've learned on r/radiology, Whats more likely to be accurate is me having 4 extra bones. 7C/13T/6L. With the extra bilateral ribs at an additional thoracic vertebra at the bottom thoracic not the bottom cervical.
NSFW tag, iodine stained skin, bruising and swelling. (And second and third example photo of what the implant looks like)
I'm posting this because I had not seen anyone who had a mastectomy and later got a Loop Recorder/Cardiac Monitor Implant. And I wished I had seen someone who had gone through it. So I'm posting to share my experience for others who have had a mastectomy and need a Loop Recorder and may be worried about results or dysphoria like me. (I'm 5y post op mastectomy and 6h post cardiac monitor implant.)
Leading up to my implant Today I've been wondering if the implant would look odd or different than for most people because I had a mastectomy. I didnt know if the tissue in my post op chest would behave like normal muscle.
I was actually worried about dysphoria if the implant was visible. (Drawing attention to my chest.) Turns out no, its not visible. *At least so far, after the swelling goes down its possible for the monitor to be more noticable. But I dont think it will be visible.
This was a relatively quick, outpatient procedure. Like mini surgery, in a nice clinic room. With only 1 suture needed and skin glue. The worst part wasnt even the implant. It was the lidocane needles to numb my chest. I'm expecting soreness to set in this evening as it heals.
I've included a second photo of an example of what the cardiac monitor implant looks like, it shows 2 variations/kinds but only 1 was implanted, of course.
(If you've ever had Nexplanon birth control implant in your arm, the Loop Recorder is implanted the same way. With a large needle thing.)
Feel free to ask general questions.
I got this because I pass out at times and also have a worsening undiagnosed heart condition and or cardiac arrhythmia. I needed the Internal Cardiac Monitor/Loop Recorder because my cardiac episodes are worsening but Infrequent* and could not be diagnosed via External Cardiac Monitors I tried (those only last 2 weeks of monitoring and is unlikely to catch an event, my Implant last 3 years or until I have a Cardiac Event and they can diagnose me and start treatment.)
I do not like my newly met spine doctor. I recently had xrays and MRI to check on my worsening chronic neck pain that I've had since 2020. For the past 2 years, the pain is flaring up to a 8/10 for hours and I'm not able to turn my head very far at all.
No Chiari or instability was found, but they did find cervical spine C 3/4/5 all have mild Broad Based Disc Osteophyte Complexes with mild Spinal Canal Stenosis.
-Meaning mild, degenerative changes in those 3 intervertebral discs, occuring alongside the formation of bone spurs (osteophytes) at the edges of vertebrae and overall is potentially the cause of the spinal canal stenosis/narrowing.
I met with a spinal doctor for the first time to discuss these cervical spine findings (and also my spine xrays showing Kyphoscoliosis and an extra vertebra bone, L6)
He said my mild findings are from "normal aging" and did not seem to want to discuss anything with me or about my pain or limited head movement.
I was/am frustrated because he said its from "normal aging"...but I'm only 29 and have been symptomatic for 6 years. From what I've read is that this condition/ findings are common+mild "age related changes" around people aged 50 years old. Not late 20s year olds.
I feel like my doctor brushed me off. I asked him not to compare me to a healthly-normal-aging older adult. I have EDS and my issues are early for age. Plus, early disk degeneration runs in my family. With this condition usually showing up mild in people around age 50, My dads was already so severe by age 49 has had to have neck disks replacements.
Anyway, thanks for listening to me vent about it. Luckly this spinal ortho doctor is not active in my care and will only be on the team to re check my scoliosis curve every few years. Luckly I have a Pain Specialist and a physical therapist who will look after me and advocavte for me. They wont gas light me or tell me I'm normal via comparing me to a aging 50yo.
Does anyone else with hEDS have these atypical symptoms that are more often observed in other types of EDS? I feel kinda sidelined with my doctors being suprised that I have these symptoms and diagnosis while not having the currently known pathogenic varriant genes for other types of EDS.
I've been dx with hEDS since age 8. I have been Whole Genome sequenced and am negative for the *currently known* pathogenic gene variants of other rare EDS types. (Future research is likely to reveal hEDS genes and also reveal more pathogentic gene variants connected to other forms of EDS, and so my dx could change if other genes/variants are flagged.)
Atypical symptoms I have that occur in other types of EDS.
- Early onset Kyphoscoliosis (I have 3 types of curves and an extra vertebra bone)
-Genetically high risk for Ascending Aortic Dissection with a minor tear having already occurred.
-Mitral heart valve Regurgitation
-Multiple heart valve Stenosis
-Childhood/adult muscle Hypotonia (not identifiably caused by other illness)
(Absence of genetically identifiable Osteogenesis Imperfecta, Loeys-Dietz syndrome, Marfan syndrome, primary rheumatoid disorders or other disqualifying illness from hEDS criteria.) (On top of the atypical symptoms, I've got most of the typical symptoms of hEDS listed on the 2017 criteria and other chronic illnesses that are often co-occuring with hEDS.)
Strollers for kids are in fact mobility aids and I will think of them that way from now on. Mobility aids are used across all ages.
Strollers help children who :Cant walk more than short distances. :Cant walk as fast as people/adults with longer legs. :Children fatigue faster than adults, often needing to sit. :Children need naps /nap in strollers. :Help with muscle soreness/discomfort from trying to keep pace with able adults. :Help children be mobile for longer (stroller to the park saves energy for playing).....and I could think of more.
Thanks for coming to my Ted talk 🔴
Yesterday I had an MRI to explore history of seizure activity.
I see my neurologist second week of July for follow up. Below is a quote from the MRI report. My neurologist messaged me about the results and said we will talk at the follow up and to not worry right now. She also said I'll need another MRI in the future to track this MRI observation.
I'm NOT worrying, I promise. But I would like to know more about what this report quote means in laymans terms.
"5mm nonspecific T2 hyperintense lesion in the left thalamus, without mass effect. This could potentially reflect sequelae of seizure activity, although a low-grade glioma is in the differential diagnosis."
Does it mean theres something there- but we dont know what- can likely explain symptoms I'm having. But we cant rule out a low grade glioma right now.
Why is it that when we search online for what ME/CFS means the internet says Chronic Fatigue Syndrome? When it should be breaking down the roots words of Myalgic Encephalomyelitis.
My= Muscle, Algic=Pain, Encephalo=Brain, Myel=Spinalchord, Itis=Inflamation
Chalking up to ME being to do with: muscle, brain and spinalchord pain and inflamation. It should not be chopped down to just CFS.
I read up on the history of the term and how its changed over time and what Countries or W.H.O. have proposed what names. Its interesting but I'm glad its likely to revert back to ME not ME/CFS. Because people only think its "CFS"
I asked my rheumatologist why it is SO hard to find the term ME broken down into what it really means. He said CFS doesnt have to do with ME. That "CFS is just CFS and they dont call it ME anymore." He "doesnt know why it used to be called that". My reply to him was "its been called ME for more than decade(s) for a reason, it was named for a reason, if it was just CFS, it would just be CFS." (they didnt just make up the root words of ME for fun to make a really long name.) And I also told him that health science and ME advocates are working on dropping the CFS and just going back to plain ME because its being misunderstood as just CFS not ME.
People can have CFS diagnosis and not have ME*/CFS but ME shouldnt just mean CFS when its way more.
Found out this week that I've got 24° Levoscoliosis with L6 Lumbosacral Transitional Vertebra with Hyperthoracic Kyphosis and Hyperlumbar Lordosis.
I meet with a ortho spine doctor next month. Also re-starting physical therapy with a focus on core and back strengh. I'm tired.
I found this chewed/eaten plastic cup of food inside the "BugBox!" crickets package. I'm concerned about my reptile eating microplastics in the crickets.
Snails need protien every 7 to 11 days. ✅️
I've read that people feed bloodworms, dehydrated mealworms (which are 25% fat) and chicken.
What about dehydrated duck heart? (19% fat , with No salt, additives or preservatives.)
My local pet store sells a variety of dehydrated meats/treats. The little duck hearts are a dollar, would last many feedings and they have decent vitamins and good protien. I figured they may be a good option for me to try with my juvenile growing snails.
Based on all that, it would be fine to try right?
What are some ways a doctor and team can do to make a loop recorder procedure appiontment go smoothly and as little pain as possible for a teen with autism. Beyond coming prepared with comfy clothes and sensory tools.