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kettlecomma4 · 2 years

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All About Choosing an Orthopedic Mattress for Hypermobility

Dealing with tiredness, sleeping problems and human brain smog Jenny Morrison, Neurogenetics Research Nurse, University College London Hospital Please keep in mind: The following text maynot and should not change insight from the person's healthcare professional(s). This does not mean that you need to have to recommend an specialist regarding a disorder that is not treated through medication. If you possess signs of a serious allergic reaction to a food, or are at an specialist. Please always keep in mind that some allergists address various other signs of allergies. Any kind of person who experiences symptoms or feels that something may be wrong need to find private, expert support for evaluation and/or therapy. The individual who has experienced the a lot of symptoms of a mental impairment or has a history of mental ailment is usually identified with mental illness or bipolar problem. This may be specifically helpful for medical personnel, psychotherapists, medical staffs who possess the experience and capabilities to review and stop clinical assistances which might further the disease or develop a psychological problem. This details is for direction simply and is not intended to provide individual medical recommendations. The Mayo Clinic might suggest that an private look at featuring this info with their annual health record. For info on how to prevent significant edge impacts and avoid them, check out: Medication for Postoperative Pain (Computer mice) Care and Treatment (National Institute of Allergy and Infectious Diseases, Bethesda, MD) Even more Common Side Effects and Precautions that You Must Inspect Your Epilepsies Prior to Utilizing this product. This relevant information is based on the take in and proficiency of the writer. The author's label and call details has been transformed to guard his privacy in regard of the document. The author is not a public amounts, he has actually no relation to the political point of view polls, and the author is not straight involved in any type of political projects. E-mail Details: The topic product line of this write-up is currently featured on the left-hand edge of the web page, for the receiver to checked out. In usual with folks who have other long-term problems, numerous folks with hypermobile Ehlers-Danlos disorder (hEDS) or hypermobility range ailment (HSD) encounter persistent exhaustion. The a large number of individuals with HEDS do not possess sufficient health and nutrition, restlessly eating (drinking booze, biting gum tissue). Chronic tiredness affects a wide selection of locations of progression such as the hypothalamus, the forebrain, and the visual peridium. The factors for this are significantly from clear. The government has actually a deep wish to boost the high quality and stability of its surveillance companies. But there is actually no clear purpose for it whatsoever. The public enthusiasm is tough because the authorities counts on the community's count on to safeguard and offer. The federal government might say that its security companies are defending human civil liberties but I securely think that is misguided and undermines the social rate of interest. As the people, it can't carry out considerably else.

While there is no easy remedy for constant fatigue there are different coping systems which can help. Work out, like everything else, can easily supply a means of managing your tension. Exercise can easily assist you not just receive about but to be energetic as properly. Several individuals lose weight in their early 20s, but after a couple of years they merely feel not solid sufficient to exercise, specifically after a job-related celebration. These problems are mostly accountable for the long-term loss of concentration and motivation. These are comparable to dealing mechanisms for ME/chronic fatigue syndrome, although constant exhaustion with hEDS/HSD and severe illness is distinct coming from ME/persistent exhaustion disorder . The operational and environmental correlates of constant fatigue as well as their function in signs and symptoms are not quite very clear, because they maynot be correlated with each other. When examining ME/CHD, the capacity to make use of these coping methods is a subject of substantial controversy. Stay moisturized Stay moisturized Staying moisturized is extremely crucial when trying to deal with exhaustion as it assists to make certain a excellent circulation of blood to your human brain. Physical exercise assists enhance brain durability while decreasing physical body body weight and blood stream stress. Remaining moisturized is More In-Depth when operating or going to a going swimming activity like marathon or scuba diving. Always keep your workout focused and don't overlook to relax your head. Also simply waking up early helps you stay hydrated. This is particularly important if you have a sibling ailment such as postural tachycardia syndrome (PoTS) or orthostatic prejudice, as these health conditions may also decrease the blood flow to your mind. The only method to steer clear of the impacts of these conditiones is to consume a healthy and balanced diet and rest routinely in the course of the day before you happen to a health center to be addressed. As well as water, electrolyte-rich drinks such as coconut water or sugar-free sporting activities beverages can help you to remain hydrated. Yet another strategy of preventing dehydration is to take supplements such as magnesium mineral. This can help to assist deal with dehydration in your physical body, but is not important. There are actually no prescribed pharmaceuticals to aid stop blood reduction and blood stream reduction leads to more dehydration. All you need to have to incorporate is a little bit of little bit of diet and medicinal magnesium mineral. Possess a healthy and balanced diet plan Possess a well-balanced diet A lot of shortages can lead to tiredness, such as anaemia (iron/haemoglobin insufficiency), vitamin B12 insufficiency and vitamin D shortage. The unsatisfactory diet plan might also provide rise to various other complications and nutritional problems. These consist of: hyperthyroidism (hypercholesterolemia), the hormone insulin resistance and cardiovascular concerns (eg, heart illness, diabetes mellitus), diabetes mellitus mellitus [1]. Low vitamin D can be more of a trouble during the course of winter, as you possess much less visibility to sunlight which aids your body system to create vitamin D. Having a well-balanced and well balanced diet regimen may strengthen electricity degrees and stop deficiencies. How to Say to Your Body Is Well-balanced To better recognize how your body is carrying out, think about what nutrient resources it utilizes and how much it needs to assimilate them to obtain adequate.

#hypermobility sleep positions #EDS and sleep #how to sleep when you are hypermobile #Ehlers Danlos syndrome and sleep

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hislittleflower-throughconcrete · 5 years

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Chronic Illness Emoji Tag

🤔 What are the chronic illnesses you have? Ehlers-danlos syndrome, hypermobility type (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation, Syndrome (MCAS) 😴 Does your illness affect your sleep? How? Chronic pain makes finding a comfortable sleeping position difficult, and I wake up frequently 🤯 What is one thing you wish people knew about your illness? That it severely impacts my life and ability to participate in everyday activities, even though it doesn’t look like there is anything wrong. I am always in pain. And that I’m not lazy! I have horrible fatigue that limits how much I can do in a day. 🙄 Describe the common misconceptions people have about your illness. That I can’t have hEDS because I’ve never had a dislocation, my skin doesn’t stretch that far, etc. People have a caricature of EDS in their heads with the most extreme case in mind, and I'm not like that. But I still have EDS! 😂 Describe a funny moment you experienced related to your illness. I can’t think of any off the top of my head! 😤 What is something that people say about your illness that irritates you? I guess when people say “oh my friend has that and she is fine/doesn’t have that issue!” or when people suggest exercise as a treatment/cure. Yes, exercise helps, but it is extremely difficult for me and therefore acting like it’s my fault that I’m in pain because I “didn’t exercise enough” is unhelpful and blaming me for my illness and pain. 👻 Is your illness visible or invisible? How does that affect you? Invisible. I feel that this means I have to prove, especially to doctors, how much pain I am in and how much I am impaired by my illness. 💊 What kind of medications do you need to take to manage your condition and its effects? I take prescription pain medicine (non-opioid) to manage my pain, a medication to elevate my blood pressure and a beta blocker for POTS, capsules literally filled with salt to elevate my blood pressure further, and medicine for depression/anxiety (this medicine also helps my nerve pain). 💉 What procedures have you undergone to manage/treat your condition? I have undergone trigger point injections, facet joint injections, and many rounds of dry-needling in my back and neck. I have also had 📉 Is your illness progressive? Yes and no. It isn’t progressive in the sense that my joints/ligaments will become much looser, or that I will progress to becoming bedridden or a shorten life expectancy. But my pain will get worse with age because everyone’s joints get worse with age and heal more slowly - mine will just be taken to a different level. ♿️ Do you use mobility aids? If so, what kinds? I currently don’t, and that is kind of a problem. I end up staying at home most of the time because I don’t have the energy/desire when I’m in pain to go out and do things, but with a mobility aid like a scooter/power chair, I could do so much more! But I’m self-conscious about how I will appear to others, and no one in my life sees the need for something that “extreme,” so I’m still daydreaming of it! 🧠 How does your illness affect your mental health? Yep. Depression. 👨‍⚕️ What doctors do you have to see? Rheumatologist, Cardiologist, Allergist/Immunologist, physical therapist (not a doc but whatevs) 🌿 What natural/non-pharmeceutical techniques do you use to manage your condition, if any? I use CBD oil to manage pain and I love it. I also use physical manipulation techniques such as a lacrosse ball/”theracane” to work out the muscle knots in my back. I also have kinesiology tape to support 🍽 Does your illness affect your eating or digestion? It can, but that’s not my primary issue. My MCAS and POTS can cause my body to just reject food at random, causing nausea and digestive issues. 🏅 What is an achievement related to your illness that you are proud of? Graduating from college, holding two jobs, and getting a child life practicum with this severe limitation. I am very proud of that. 🏥 Have you been hospitalized as a result of your illness? Not because of these three illnesses, no. 🛏 What are your favorite things to do when stuck in bed? Watch youtube usually, or netflix 🗄 What are your bedside table essentials? Meds, applesauce (which I take my meds with), “theracane” thing, water bottle(s), CBD oil, snacks, and tissues 😷 Is your condition autoimmune? Does it cause compromised immunity? Neither of those are an issue for me, but I am getting tested for autoimmune conditions to see if I have those on top of everything 🤕 Does your illness result in pain or injuries? How? Chronic joint and muscle pain - joint pain from joints being in the wrong place and jerking around in their sockets in ways they shouldn’t, and muscle pain from spasms due to muscles struggling to compensate for the ligament’s lack of function. 👎 What is your least favorite part of having your condition? The pain and how I miss out on things due to pain/fatigue 👍 What is your favorite part of having your condition? That it gives me an opportunity to offer up my suffering to God and unite my suffering to Christ’s on the cross 💸 Does your insurance cover the treatments you need? Parts of it, not completely. Most pain management treatments are completely out of pocket. ⚖️ If you could change having this illness, would you? Yes and no. I wish I wasn’t so limited by it, but I wouldn’t trade my ability to offer my sufferings up for anything - they have a power beyond what I will ever know on this earth.

I tag @chronically-sparrow and @chronicallyjessica ! Answer any and all questions you are comfortable with.

#chronic illness #eds #pots #chronic illness tag #invisible disability #ehlers danlos syndrome

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canaryatlaw · 5 years

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okay, well today was alright. alarm went off bright and early at 7:45 am and getting up was quite the struggle but I made it happen. Got up and got dressed in time for the 8:21 bus, because there can never be the 8:30 bus that would actually work with my timeline *sigh*. made it to church with about ten minutes to spare (since I had to take the bus ten minutes before what would’ve made me on time) and hung out in the kids team volunteer lounge for a few before the huddle. It was set to be just me and one other girl in the babies for this service, which shouldn’t be bad. Since it’s the middle service which is the most popular they have the babies and walkers in different rooms, whereas for the other services they generally combine them. When it comes to the babies room I always say it’s either everything’s calm and perfect or everyone’s screaming and something’s on fire. Well, today was one of the latter days unfortunately. I was holding this little boy who was crying for so long, and I’d get him to stop only for him to start again totally unprompted two minutes later. It got to the point where we would normally call his parents, but due to some weird technical glitch we didn’t have his parent’s phone number (they’re generally printed on their name tags so we can easily contact them) so we had to just wait it out. And contagious crying was in full swing, so it was pretty much always at least 2 babies crying at any given time. so that was a lot, but we survived. Once we were all finished I was told there was cake in the volunteer lounge (lol) leftover from the couple who runs the kids ministry’s daughter’s 3rd birthday party the day before and it was all fancy like made from a bakery and everything and damn it was good cake lol, so I was basically shoving that in my mouth and then running to the service. My lack of sleep definitely hit me hard while sitting listening to the message, and I was struggling to keep my eyes open for quite a bit of it. I thought I had a pack of caffeinated gum in my purse (and I later found out I did) but I couldn’t find it for my life so I just had to survive. It was the time of year though when someone from team World Vision comes to talk about getting people to do the Chicago Marathon with them and raise money for their efforts to bring clean water and so much more to communities living in poverty in Africa and beyond. I have a soft spot for their organization after what I like to call “The World Vision Incident” that happened in March 2014 and is the reason I very intentionally dropped the world “evangelical” in referring to myself (I won’t get into the details now because I’ll get infuriated and never shut up, but suffice to say it left me absolutely horrified as to the behavior of the “Christians” involved) and has led to me sponsoring a child through them (her name is Retseplie, she lives in Lesotho, Africa, she is 13 years old and shares my birthday of March 26th). Sadly running a marathon is very strictly off the table for me being that my lungs can’t work properly when I run, but I always appreciate their challenge and love that many of my fellow churchgoers do take on the challenge. The sermon itself was fairly well related, starting a new series called “Loveworks” which is also the title of our like outreach team that organizes events giving back to the community here and everywhere, so we were talking about how if you’re not helping the poor you are very much not doing what the bible has instructed you to do and stuff like that, I probably would’ve recalled more if I wasn’t fighting to stay awake but not much I can do about it now (I may relisten to it when it pops up as a podcast episode in a day or two). Once church was over I headed out, taking the train to the bus home. I quickly changed out of my nice church clothes, then ate my leftovers from the cheesecake factory last night, the food portion anyway, I left the cheesecake for later on. For most of the afternoon I worked on little things I needed to get done including doing the dishes which had become a massive pile that was beginning to smell, and that’s really rank so we needed to put a stop to that for sure. It was quite the pile so it ended up taking a solid hour or two, but I felt very accomplished when I finally finished it. I put them all away after that and had to soak a few in hot water and soap because they still smelled really musty and gross, but thankfully that worked rather well. I eventually sat down on the couch with my cheesecake and some bubble tea I made and watched last week’s Supergirl episode since I hadn’t gotten around to that yet and wanted to be able to watch tonight’s episode, which I did shortly after finishing last week’s, in between which I watched a bit of “Ellen’s Game of Games” which is fucking hilarious. Overall reaction through the two episodes- ugh, I wish they’d just drop the children of liberty storyline already, it’s so fucking cringeworthy and it really was so unnecessary, we could’ve had such a good full season villain in Lex and red sun Kara. Of course it doesn’t help that I already have a strong dislike for Sam Witwer (RIP Jimmy) and any character he plays. I did like the few moments they had with his son when he runs into his friend at the raid of the alien bar and he starts questioning things, and ultimately ends up reaching out to his friend to try to help him. Of course now I’m sure it won’t help that his mom apparently just got killed by an alien, but I mean, if you’re going around acting like a giant asshole and actively endangering the lives of thousands of aliens living peacefully like....sorry buddy, but you brought that on yourself. I liked that we got to see some more of Kara Danvers and not just Supergirl, especially when she actually gets to do some reporting. The interview with Dreamer at the end was so damn good, I was actually on the verge of tears watching it, it was really excellent. I loved Kara and Lena teaming up to search for clues about Lex and what all they end up finding. I thought the brief flashback with the two Luthor siblings was very interesting, up to this point I don’t think I’ve seen anything suggesting that Lex was ever protective over Lena in any way really, so that was surprising but also kind of nice to see. I felt bad for Lena at the end when she was confessing to Kara that she had been helping Lex because she believed he was terminally ill, and I’m just like Lena, sweetie, this was not your fault, and I’m glad Kara was there to say it. So yeah, overall not bad episodes but this season still isn’t doing much for me. Once that was over I switched over to netflix and watched a few more episodes of the family baking showdown show I just started which was quite entertaining, and I pretty much watched those until I showered and started getting ready for bed, and now I am here, and did I mention I’m tired? so yeah. Tomorrow plan is to make it to the post office to mail the international autograph and to Target to pick up my prescription from Friday at the allergist, the two are on the same road so I should be able to figure something out. Until then, I will be getting some sleep. Goodnight loves. Hope your Monday doesn’t suck.

#daily journal #April 2019 #Rachel watches Supergirl

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chronic-confessions · 6 years

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Confession #3,491

I’m slightly envious and embarrassed.

I got a little too excited When my mom said that she would book me an appointment for an allergist this year.

I’d never been before but ive always had horrible allergies and asthma. Like I literally break out in hives and welts if i touch my dog for a minute.

And so I told a friend that I was having this appointment this year, hoping that she’d be supportive or whatever.

And she goes “this is you’re first time going to an allergist? I literally go every year. How have you not gone yet?”

On one note I get what she’s saying. Cus shes not chronically ill at all. And I’m always coughing and sneezing and poping allergy pills back to back all summer/spring.

And I literally just told her “I’m poor ¯\_(ツ)_/¯ ”

Cus her dad is a veteran or whatever and they have doctors on the base .and I don’t think they even pay that much for health insurence or their appointments anyways.

Like I wish I could’ve seen an allergist years ago, but we’re poor so shut the fuck up.

#chronic-confessions #chronic illness #chronic community #spoonie #spoon theory #allergies #asthma #hives #welts #unsupportive friends

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thebibliosphere · 7 years

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For most of my life I was running off the assumption that I have no allergies, but now, 18 years later, a cat allergy is rearing its ugly head. I have a long-haired cat and I am s u f f e r i n g .

Oh no, I’m so sorry :(

Allergies can develop at any age, seemingly out of the blue or after something like an illness or long term stress. My allergies are a recent thing brought on by an immune system collapse, it’s my body freaking the fuck out and treating everything like the possible invading force that triggered the whole meltdown.

If you can invest in an air purifier, that might help substantially with keeping the pet dander out of the air. If you’ve got central air and control the vents, invest in some cheap filters and change them every month. The expensive $20+ ones don’t do shit, and you’re better off having the $2 ones and changing them out every month.

You can also try an otc med like zyrtec or xyzal, or claritin. My allergist prefers zyrtec for respiratory allergies. You can also try a saline rinse, which some people find really helps when it comes to pets they are allergic to.

Hopefully some of that helps, if you haven’t tried any of it already. The suffering is real and I wish you well with it

#allergies #chronic health tag #seelezeit

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theoriginalsourjane · 4 years

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Back to sims tomorrow!

I was feeling really awful for a couple of days and was worried because it was out of my normal chronic illness symptoms. I almost went to the ER this morning because I could breath very well and couldn't keep my eyes open and then I decided to take a benadryl while I was getting ready to head in and within a few minutes I felt like brand new (if the world was not what it is now with this pandemic raging I would have still gone in as I'm supposed to get labs drawn in that situation) I think I was exposed to something in my house that triggered a massive histamine attack and my anxiety is higher than normal and I think there was just kind of a perfect storm so to speak of things happening that my histamine/mast cells got way out of control. My allergist/immunologist is gonna be so grumpy w me. I'll probably send in a message to him and my regular doc tomorrow. Just need to rest and try to keep my body calm so it doesn't flare again cause I REALLY don't want to go in anywhere!

I kind of wish I could play FFXIV but my sub runs out (barely got to play) tomorrow I think and still trying to pay off vet bills so gonna be a looong while!

#non sims

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silvershadow1398 · 5 years

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#13

Personal

1-How are you? Fine

2-Post a picture of yourself. No thanks

3-Do you ever wish you were someone else? YES

4-What is your entire name? I am not disclosing that

5-How old are you? 21

6-Age you get mistaken for: I always joke that it’s anywhere from 12-15, but realistically probably around 18

7-Your zodiac/horoscope and if you think it fits your personality: Pisces, and yes

8-What did you do on your last birthday? Absolutely nothing

9-What is one thing you would like to accomplish before your next birthday? Be a good captain of my dance group

10-What is your hair color? Black

11-Have you ever dyed your hair? Yes, I have brown highlights

12-What is your eye color? Dark brown

13-If you could change your eye color, would you? Yes

14-Do you wear contacts/glasses? Yes

15-Your opinion about your body and how confortable you are with it: I don’t like my face, my body is ok other than being too short

16-Have you ever considered plastic surgery? What would you alter about your body? I wouldn’t actually do it but yes, and it would be rhinoplasty

17-Say 8 facts about your body: 5′1″, size 5-6 (US) shoe size, somewhat flexible from dance, strong/large thighs but chicken arms, reached my final height at age 12-13, nearsighted since age 8, I have external tibial torsion from ballet, very prone to insect bites

18-Do you have any tattoos? No

19-Do you have any piercings? Yes, two per earlobe

20-Left or right handed? Right

21-What’s your sexual orientation? Ace

22-Do you drink? I have, I don’t really like to

23-Do you smoke? No

24-Do you have any pets? No

25-Where do you work? Currently not employed

26-Something you are working on right now: Choreography for a dance next year

27-Do you have any “rules” about food? I’m very very very picky

28-Where are you from? Maine, US

29-What would you say is your best quality? I don’t tell secrets

30-What do you think you’re really good at? I’m a fairly good dancer, photographer, video editor

31-What do you think you’re really bad at? Actually putting effort into my work and studying, I really should be getting better grades than I get

32-What talent do you wish you’d been born with? More strength and flexibility for dance

33-Are you a bad person? I can be

34-Are you nice to everyone? Noooo

35-Say 3 facts about your personality: INFJ, I think you can figure out two others based on that

36-Has someone ever spread a nasty rumor about you? I don’t believe so

37-What is your ideal bed? Why? At least a queen size

38-Did you wake up cranky? Today? No, I don’t think so

39-Do you sleep with a stuffed toy? No

40-What do you think about the most? How much I wish I was someone else

41-Share 2 habits: I twirl my hair and pull strands out that aren’t 100% straight, I grind my teeth

42-What you want to be when you “get older”? Idfk

43-What are your career goals? Idfk

44-What is your ideal career? To not need one lmao

45-Is your life anything like it was two years ago? No way

46-Do you replay things that have happened in your head? When do I not?

47-Have you ever had an imaginary friend? I don’t think so

48-Say 10 facts about your room: Currently in a dorm room bc I’m at college, boring af, white walls, not very decorated since I’m moving out soon, the door is not soundproof at all, Australian outlets, small but honestly not too cramped, no curtains, air conditioner, huge windows

49-Do you have any phobias? Spiders, heights in some situations, being alone in a public area

50-Have you ever been to a psychiatrist/therapist? No but I really should go...

51-Are you allergic to anything? If so, what? Not explicitly declared by an allergist, but insect bites

52-Ever broken any bones? No but I had my first sprain a month ago!

53-Ever come close to death? No

54-Things you like and dislike about yourself: I like my personality but I hate my appearance

55-A random fact about yourself: Excluding my adoption bc I don’t remember anything about it, studying abroad is the first time I have ever left North America

56-What are three things most people don’t know about you? I used to play a couple instruments when I was younger but not anymore, never been to Europe, I have a specific pillow that I always have to sleep with

57-An unknown fact about your life: Ok so I TECHNICALLY have two older step-siblings from my dad’s side, but I do not like them nor do I have a relationship with them so I just say I don’t have any

58-Share something about yourself others might think is weird: My music taste

59-Five weird things that you like: They’re pretty nerdy; wildlife, astronomy, psychology, geography, demographics

60-Do you have a facebook? If so, would you add the person who sent you this? Yes I do, and no one sent me this I just found it

61-Do you have any pictures on your Facebook? Just a profile pic, I deleted all other pics I’ve ever posted

62-Describe yourself in one word/sentence: Socially uncomfortable INFJ who just wants to go to bed

63-A quote you try to live by: Idk

64-Leave me a compliment: Thanks for making this survey

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~~~~~~~~~~Favorites

65-What is your favorite thing to do? Watch YouTube videos

66-What’s your favorite color? Blue

67-What’s your favorite band/singer? I don’t have one right now

68-What’s your favorite movie? I don’t like movies

69-What are your favorite books? I don’t read enough to know

70-What is your favorite quote and why? Idk

71-What is your favorite word? Idk

72-What is your least favorite word? Idk I have a lot

73-What is your favorite type of food? Pasta

74-You favorite ice cream? Vanilla

75-What’s your favorite animal? Emperor Penguin, koala in a close second

76-Dogs or cats? Dogs

77-Describe your favourite texture: Cotton

78-What is your favorite flower? Idk

79-What’s your favourite scent? And on the opposite sex? Clean laundry lol, idk on the other sex

80-What is your favorite season? Tie between summer and fall

81-What are the top five places you wish you could go before you die? (not in order) London UK, Paris France, Copenhagen Denmark, Auckland NZ, Perth Australia

82-What are four things you can’t live without and why? Laptop, phone, DSLR camera, headphones, all their chargers; I think you can guess why!!!!

83-Which mythological creature are you most like? Why? Idk

84-What’s your favorite television show? Idk I don’t really watch TV

85-Favorite place to shop at? The grocery store! Lol jk, idk

86-Say 2 facts about your favorite things: They’re all electronics?

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~~~~~~~~~~Family, childhood and places

87-Say 4 facts about your parents: They’re technically my adoptive parents, 11 years apart in age, larger age gap to me than most parents to their kids, wealthy

88-Are you more like your mom or your dad? Mom

89-Do you have any siblings? See #57

90-Say 9 facts about your family: Technically my adoptive family, mom’s side is Italian and Irish, dad’s side is Norwegian and German, I have a zillion and 3 cousins on my mom’s side, I know literally no one on my dad’s side, one of my cousins on my mom’s side is my literal soulmate I love her so much, I’m pretty sure I’m the only adopted family member on both sides, 3 of 4 grandparents are still alive, I feel pretty disconnected from my family for the most part

91-What’s your relationship like with your family? See last fact in #90

92-Say 7 facts about your childhood: Jesus what’s with all these fact questions?; I had a good childhood for the most part, I was more outgoing as a kid than I am now, then again I had 0 mental illnesses as a kid lmfao, I had a nasty accident at age 5 that left me with my trademark “eye dimple”, I played a LOT of computer games, I moved at age 9, I miss my childhood

93-The best and the worst childhood memories: Best memory is playing outside with friends or my parents and being carefree, the worst memory is that I was quite a crybaby at times

94-Say 6 facts about your home town: I honestly have no idea

95-Are you going out of town soon? I’m currently out of town! Will be back in less than a month

96-Where would you like to live? The major city right next to my town is pretty nice

97-What would your dream house be like? DREAM house would be a mansion with a lot of cool stuff, but that’s not realistic so I’d like a nice apartment in a good area

98-Where would you go on your dream vacation? I guess you could say I’m currently on my dream vacation, Australia!

99-Where you want to be right now? Anywhere except the school I’m at

100-Top three places to visit: That I’ve been to? Ok so that would be Sydney Australia, Newport Beach California, Maui Hawaii

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~~~~~~~~~~Friends

101-Would you ever smile at a stranger? I have

102-Do you prefer to be friends with girls or boys? Girls

103-Who is someone you never tire of? Honestly not sure, I get sick of people very easily

104-Do you have someone you can be your complete self around? Pretty damn close to it when I’m with my mom and one friend, but I’ve never been 100% around anyone

105-Who is your most loyal friend? The friend noted above

106-Is there anyone you can tell EVERYTHING to? Not EVERYTHING, but my mom is pretty close

107-If your best friend died, what would you do? I’d be devastated

108-A reason you’ve lied to a friend: I didn’t want to hurt them, or I was so ashamed of the answer that they could NOT know

109-Have you ever felt replaced? Yes

110-Say 5 facts about your bestfriend(s): I honestly don’t know if I have a best friend

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~~~~~~~~~~Relationships

111-The last person you hugged? A friend last week because it was her birthday

112-Who was your first kiss with? Some guy I went to high school with

113-Do you like kissing in public? I have never done that, but probably not

114-Have you ever kissed someone older than you? No

115-You have a preference for boys or girls? Technically ace, but boys

116-Is the male or female body closest to perfection? I’m more attracted to men

117-Do you believe in love at first sight? I think it could happen

118-Do you believe in soul mates? It’s possible

119-What is your idea of the perfect date? Idc as long as I’m spending time with the person

120-Based on past relationships or crushes, describe your perfect boyfriend/girlfriend: The only people I’ve ever actually fantasized about are YouTubers so...

121-What is the first thing you noticed in someone? Usually the way they present themselves (are they angry, happy, relaxed, easy going, etc.)

122-Are looks important in a relationship? Not the most important, but they help

123-What’s the most superficial characteristic you look for? I don’t mind if someone has not had braces, but if their teeth are REALLY bad then that’s kind of a turn off

124-What’s your opinion on age differences in relationships? I can’t go more than 10 years

125-Would you ever date someone off of the Internet? Probably not

126-Five guys/girls whom you find attractive: Dan Howell, Phil Lester, Shayne Topp, Damien Haas, Tyler Scheid

127-Do you have a crush on anyone? No

128-A description of the girl/boy you like: I don’t like anyone

129-Say 1 fact about the person your like: I don’t like anyone

130-If the person you like says they like someone else, what would you say? Cool...

131-When was the last time you told someone you loved them? Never done it

132-Do you think someone has feelings for you? Haha nope

133-Do you think someone is thinking about you right now? Haha nope

134-Have you ever cried over a guy/girl? No

135-Have you ever wanted someone you couldn’t have? No

136-Anyone you’re giving up on? No

137-Have you ever liked someone you didn’t expect to? Yes

138-Have you ever liked someone who your friends hated? No

139-Have you ever liked one of your best friends? No

140-Has anyone told you they don’t want to ever lose you? Lol nope

141-Is there a boy/girl who you would do absolutely everything for? No

142-Is there someone you will never forget? Probably the dude I kissed

143-Say five ways to win your heart: Be authentic/yourself, don’t hide things from me, accept that I’m not perfect and have bad days, accept that I need to be alone a lot, know that I will test whether I can trust you by talking about weird things

144-What turns you on? A really nice smile

145-What turns you off? If you come off as a douchebag or if you don’t look like you take care of yourself (poor taste in clothes, smell bad, etc.)

146-What is the sexiest thing someone could ever do for/to you? Go somewhere with me that I consider extremely nerdy or weird for most people

147-What’s the sweetest thing anyone’s ever done for you? Idk

148-What’s something sweet you’d like someone to do for you? Idk

149-Have you ever written a song or poem for someone? Have you had one written for you? No

150-What’s the sweetest thing you’ve ever done for someone? Yesterday I gave some encouraging words to someone who’s been through a lot lately

151-Are you in love? No

152-Are you in a relationship? No

153-If you have a boyfriend/girlfriend, what is your favorite thing about him/her? Don’t have one

154-Are relationships ever worth it? I think they can be

155-Is there someone mad because you’re dating/talking to the person you are? No

156-Can you commit to one person? Yes

157-Do you think you can last in a relationship for 6 months and not cheat? Yes

158-Do you ever want to get married? I’m not forcing it but if I meet the right person then sure why not

159-Do you think you’ll be married in 5 years? I honestly have no idea, I can see myself as either

160-Future names of your children: I don’t have any bc I don’t want kids

161-Do you get jealous easily? Yes

162-The last time you felt jealous, and why? I’m usually jealous of someone who I believe is a better dancer than myself

163-What is your definition of cheating? Actively pursuing someone else

164-Have you ever been cheated on? No

165-Do you forgive betrayal? Never been betrayed, but my guess is no

166-Have you ever cheated on someone? No

167-Why did your last relationship fail? Never been in one

168-Things you want to say to an ex: I don’t have an ex

169-A description of the person you dislike the most: I have a lot of people I don’t like, I don’t think I can pick just one

170-If your first true love knocked on your door with apology and presents, would you accept? I don’t have one

171-How many boyfriends/girlfriends have you had? Zero

172-How long was your longest relationship? Never had one

173-You’ll love me if… Idk

174-Share a relationship story: Don’t have one

*************************************************

~~~~~~~~~~Music, movies and books

175-How often do you listen to music? All. The. Time.

176-What kind of music you like? All kinds except most rap and country

177-Do you like to dance? I fucking love it

178-What was the first concert/show you attended? I don’t remember

179-Have you heard a song that reminds you of someone today? Yes

180-Share a song that takes you to a certain memory in the past: Currently listening to Doctor’s In by Pond, which reminds me of a field trip I took about a month ago

181-A song that’s been stuck in your head: I don’t think I have one stuck in my head right now!

182-Put your music player on shuffle and write the first ten songs that play: Remedy by Little Boots, Hold My Heart by Tenth Avenue North, Test Drive from How to Train Your Dragon, Fine. by Carah Faye, Run Run Run by Dragonette, Exogenesis Symphony Part 2 by Muse, Mr. Saxobeat by Alexandra Stan, Concerto in F from An American in Paris, Information Overload by Grabbitz and Pierce Fulton, When I’m Away by The Colourist

183-A book you want to read/have recently read: I haven’t read lately and can’t think of one that I want

184-Describe your dream library: Idk

185-Last movie you just watched: I don’t remember

186-Do you like watching what type of movies? I don’t really like movies but if I had to pick, documentaries

*************************************************

~~~~~~~~~~Situations and crazy things

187-You’re in a tattoo parlor about to get inked. What are you getting done? Not interested in tattoos, but if I had to pick it would probably have something to do with either wildlife or Australia

189-What’s something you can see yourself going to jail for? Internet stalking

190-If you could be any character, from any literary work, who would you choose to be? Idk

191-You’re given $10,000…under one condition: you cannot keep the money for yourself. Who would you give it to? My parents

192-If you had to go back in time and change one thing, what would it be? This is morbid, but I would be born as someone else

193-If you were an element on the Periodic Table, which would you be and why? Idk

194-If you had to delete one year of your life completely, which would it be? Sophomore year of college

195-You’re an Action Movie Hero. What’s your weapon of choice and the line you scream when defeating your arch enemy? Idk

196-If you could design an amusement park ride, what would it be like? Idk

197-What is the first curse word that comes to mind? Fuck

198-What the last party you went to was… and when the next will be… I went to a birthday party last week, idk when the next one will happen

199-Halloween costume idea? This coming Halloween I’m currently thinking of going as a koala

200-What are you supposed to be doing right now? Studying lol

201-Currently wanting to see anyone? Parents in a couple weeks!

202-Why you follow me? I don’t? I literally just found this survey somewhere

203-If you met me what would you do? Idk who you are

204-Leave me a ridiculous question: Who are you?

205-Leave me a cute message: Idk

*************************************************

~~~~~~~~~~Opinions and beliefs

206-Is the cup half full or half empty for you right now? Empty rn

207-Do you believe in fate/destiny? Certain aspects, yes

208-What you wish for on 11:11? I don’t wish for anything

209-Do you consider yourself lucky? What’s your good luck charm? I do consider myself lucky at times, I don’t have one

210-Do you believe in aliens or life on other planets? Yes

211-What is your religion, if any? Technically Christian (idk what type), though I don’t actively practice Christianity

212-Would you go against your moral code for money? No

213-What’s more important to you: strength of the body or strength of the mind? Mind

214-How important you think education is? Very important

215-If you were the president, what would you do? Get rid of capitalism

216-If you could change one thing in the world, what would you change? Capitalism

217-Is it the thought that counts? Or is that phrase circumstantial? Idk

218-If you only had 24 hours to live, what would you do? Celebrate (lmfao I know that’s crude but I have depression)

219-Which movie character do you most identify with and why? Idk

*************************************************

~~~~~~~~Feelings and Others

220-Are you a procrastinator or do you get things done early? I am quite the procrastinator if I’m not interested in the task, otherwise I’ll do it ASAP

221-Post a photo/draw a picture/write a poem (pick one) of a moment of personal significance: No thank you

222-Say 5 things you love unconditionally: Kind of running out of steam to answer this

223-What motivates you in life? I’m not gonna die anytime soon so I should do something useful (sorry that was also crude)

224-Something that you’re proud of: I’ve accomplished some good things

225-Five words/phrases that make you laugh: Dingus, dingleberry, twat, meme, dank

226-Share the story of something that makes you smile: Whenever I see a new YouTube video that I know I HAVE to watch

227-Something you always think “what if…” about: What if I wasn’t abandoned at birth and not adopted

228-What was something you used to enjoy, but was ruined for you? What’s the story behind that? Thought I’d enjoy seeing a show at the Sydney Opera House, then I fainted while on a tour of the venue so I can never go inside the building again (seeing it from outside is ok)

229-Describe one of the most awkward experiences of your life: I MAJORLY MAJORLY offended someone (in Australia nonetheless) a couple months ago

230-Something/someone that you miss: My house

231-Are you over your past? Nope and I probably never will be

232-What is your saddest memory? Idk I’ve had a lot

233-One of the hardest moments in your life: Dealing with my parents when they’re acting like children

234-Is there something that happened in your past that you hate talking about? YES

235-What’s something you want to do that you’d be embarrassed to tell other people about? Idk

236-What was your most embarrassing moment? Falling into a split from slipping on stage during a rehearsal

237-Share one of your fears/insecurities: Very insecure about my appearance and being adopted

238-Something you’re currently worrying about: If I’m gonna pass my final exams

239-Have you done something you regret very much? Yes

240-If you could take something back that you said or did, what would it be? Idk I’ve done a lot that I regret

241-Does anyone hate you? Probably

242-Do you hate anyone? Yes

243-Are you good at hiding your feelings? For the most part yes, but I do have outbursts (that smack myself about later)

244-What’s something you hide about your personality? I fake being social enough that people don’t think I grew up sheltered

245-How do you approach social situations? See above

246-Are you a social or an antisocial person? Very antisocial

247-Are you an introvert or an extrovert? Very introverted

248-Do you care if people talk badly about you? Yes but I know I shouldn’t give a shit

249-How do you deal with criticism? I’ll rant to my mom, or just bottle up my feelings

250-How you hope your future will be like? I just hope I’ll be happier than I currently am

251-What’s something that scares you about the future? Idk wtf I want to do with myself

252-Five items you lust after: Electronics, enough said

253-One thing you’re excited for: My parents to come back to Australia so I can leave this shitty university and go traveling again

254-Describe the most terrifying/strangest/beautiful dream you’ve ever had: I’ve had dreams about giving birth, and I once had a dream that I was going to have sex but I woke up while I was in the middle of foreplay

255-Have you ever had a crush on a fictional character? Not fictional, but I have had crushes on celebs

256-Who is your celebrity crush? I’ve gone through a lot of people, but it’s currently Damien Haas

257-Make a confession: I need to study, help pls

#about me

0 notes

docboots · 5 years

Text

(PotDA 11) The Professional Patient

It has been a year since my upper teeth were ripped out. While some of the updates to my life are good, there are plenty more issues that rise up. Specifically in how much I feel I need to do before and while I continue to try and get my teeth removed. Though, at this point, it is bringing myself to actually make the appointment. The machismo from the adrenaline has worn off, and I find myself terrified of another go. While the pain was not spread over a weak like the torment I am used to, the agony of the removal of my teeth sticks with me. While I can take comfort in it as inspiration for horror plots and ponderings that hopefully will become the horror stories to define my legacy one day, but the terror of another go holds me back. Like it did in writing this.

I suppose, at this point, you could clearly call my focus on the health care system a bit of an obsession. Though, I personally do not know how I should otherwise approach a situation as I have experienced. The years go by, and still, I have more to write and ramble about. Still, I have more that makes my mind throb with conflicting emotions of manic outrage and debilitating depression. All the while the buzz of anxiety add to the haze, while the ADHD warps me completely. Fuels the fire of the rest by being the name for a peculiarity in my mind I had since I was born, I’d imagine, as I was diagnosed with it at the age of 5. However, I’ll get to the bumblefuck that was my ADHD treatment (or lack thereof for the past decade) in the next ramble. This one is to bridge the gap I mentioned in the last one.

As a brief recap, on March 23, 2018, I went in to have all of my teeth removed. This was required as a lifetime of one of my disease’s flare-ups mixed with a decade (around 16-20 to a week ago. More on that later.) of the issues of suddenly taken off medicine for your ADHD and forced to stay off it no matter how many damn doctors/shrinks/pill-shrinks you see explaining your symptoms causing the stress to increase and the flare-ups to become more frequent. The constant vomiting exacerbated an issue a sugary diet may have caused and utterly demolished my teeth little by little. However, thanks to complications from how infected these teeth had become (having been unable to do anything due to co-pay costs, then not having insurance, then Medicaid being a headache to find anyone to be able to get it fixed) which lead to a few hours of pulling, waiting, pulling, blah blah… I was referred to an oral surgeon.

Which is where the Health Insurance Shenanigans begins. I am quite familiar with these shenanigans, as they have been happening since I started. You see, the many different Nevada Medicaid healthcare providers who have insured me will have a list of the different doctors that will take your insurance. It sometimes might even claim to be able to tell you if they accept patients. This would be highly convenient if it did as it said. Instead, whenever I wanted to find a doctor, I would have to go down the list and call them one at a time. The moment Medicaid is mentioned, their tone sours ever so slightly. They tell you that, regardless of what the list on my provider’s own list says, they do not take Medicaid. The other constant was that if they DID, they were full on patients. If the did and they had openings, it is months down the line. When you need to find multiple specialists to deal with multiple issues caused by the same illness, this gets highly agitating. Frustrating as the ones I believed I could complain to like to assure me they understand it as. Why I do not believe them is they also seem surprised at how FUCKING PISSED OFF fucking up my health makes me.

Remember these shenanigans, I will be bringing them up often.

On March 6th, 2018 I received a letter from the allergist, who had been (poorly) helping me with my HAE care, that my care with them has suddenly been terminated. Now, I had only a few months prior FINALLY received from this doctor a pair of highly useful medications. In between the belittling, lecturing, and talking down to I got more than treatment, I finally was prescribed HAEGARDA and FIRAZYR. The first being a medication I WAS taking twice a week. It was rather painful for 15 minutes upon injection, but that cleared up quickly. The other was to be used in the event of swelling, injected like an Epipen (WHICH IT GOD DAMN ISN’T) might be at the moment of attack. With these two medicines, I had been comfortable enough to make my appointment with the dentist in the first place, which after a few appointments before I received the letter had been set for March 23rd.

Suddenly I received that letter, which was soon followed by the provider of the two medicines telling me my YEAR LONG PRESCRIPTIONS with them had suddenly been pulled. Something they were confused about, MUCH LIKE IS WAS. Upon calling my allergist’s office, I learned that the reason had been APPARENTLY I wasn’t taking it. Which is confusing, as I had been, and had only missed the one appointment before the letter thanks to the INFECTION IN MY GUMS I NEEDED REMOVED along with all the other damn issues I was having and trying to mix making me have troubles sleeping and making an early morning appointment. Something that I apparently need to suck up.

This reasoning SHOULD have been easily refuted by the constant deliveries of the medicine TO MY DOOR. The nurse that had come and taught me to use these medicines, THEIR APPROVAL THAT I KNEW WHAT I WAS DOING. As well me having sharps container with plenty of the injection needles I used. They did not wish for any of this, and after angry demands given I HAD A SURGERY APPOINTMENT for my teeth which has a DAMN HISTORY of causing swelling of the throat. So they extended it for 30 days, a bridge period, after constant calls that now just sit in my head like an angry flurry. Mixing them up, but the point is I had to FIGHT to make sure I had enough of the medicine for my blood disease so I could go through the dental procedure with the lost chance of a POSSIBLY FATAL flare-up. Fun.

So, once I was healed up after the dental appointment so I could start calling and get the bottoms removed… The Healthcare Shuffle appeared! This is when I tried to call the Oral Surgeon I was referred to, they said they never received it. I call the Dentist who sent it and they said they sent it to my insurance. I call my insurance and they first said they haven’t received it. Later say they do and sent it but the Oral Surgeon never got it. WHILE all this was happening, a far more problematic issue arose. Keep in mind, this is all happening as I am still getting over the fact I now have these annoying dentures that I am STILL angry over.

The medicine ran out. So, of course, I had to find someone new to prescribe me it. This had the issue of me needing to FIND someone who would do this. The Primary Care Physician that I had was uncertain himself and kept telling me he knew nothing about the disease. After explaining, he referred me to a Hematologist and Allergist… IN VEGAS. (This is 8 hours away from me on a good day or requires an hour and a half plane trip for something I likely need to do multiple times. I live in a city, not a small town. That has MANY ALLERGISTS AND HEMATOLOGISTS.)

Annoyed by this, and after Medicaid Shenanigans, I eventually got an Allergist and a Hematologist referral. Upon calling the Hematologist, they refused! I was highly confused, as they kept repeating that I should go to an allergist. They don’t treat allergies. Hereditary Angioedema is a blood disease. NOT an allergy. Apparently, nothing can be done and I have still yet to see a hematologist. Joy. The reason? Even though I explained extensively this was a genetic blood disease and the symptoms only could be COMPARED to an allergy to stress. IT DOES NOT REACT TO ALLERGY MEDS. An epipen makes the area I inject just swell up yet give me the energy for my skeleton to feel like it wants to run around the block without the rest of me.

So, not surprising, this caused a lot of issues with swelling. Inevitably, I had an episode involving my gastrointestinal system. This time, it was bad enough I couldn’t seem to use medical marijuana to cover the symptoms until I was well and had water in me. So one Ambulance ride later I am in a hospital bed… Oh, wait, no, I am at the front desk of the emergency room waiting for a bed for a bit. Until I puke enough to be a disturbance. However it still takes quite a while before I get the main thing I want and have been kept from thanks to my body violently puking it up. I wanted an IV with something to hydrate me. The drugs could wait untiul the doctor, but as time went by and it felt like an eternity, I kept being told by all the people checking on me that I had to wait for a doctor to get my damn liquid.

All the while my fiance and my father are both helping explain that this was, without any doubt, an attack from my blood disease. It was an hereditary angioedema attack, blah blah… My discharge papers (useful in tracking my disorder and proving problems.) instead say it is some ‘unspecified vomiting type’ instead of maybe ‘blood disease triggered vomiting’ or ‘HAE triggered vomiting’, ‘genetic disorder triggered vomiting’. Think you get the point, more something that proved the medical staff were actually listening to my concerns. Attempts to fix this so I had proof with disability was met with them saying once that is written down it is permanent.

Then, five months later, it happened again.

Luckily, the Allergist I eventually found turned out to actually have heard and seen a couple others who had this disorder. He knew of medicines and, instead of feeling like I needed to teach my doctors… I was given hope! I was given a vial of Firazyr. He said it was extending an olive branch, and I feel this will be what I remember when I try to think of the emotions needed to write a scene similar. I have never felt hope like I have then. Hope that likes to come and go, but at least I have one doctor at-bat for me.

Until a couple of months ago as of March 20th, 2019, I FINALLY was put on a new medication. Tahkzyro which I take twice a month. HOWEVER, I am still getting push back when it comes to getting the Firazyr, which would help me with my anxiety over the next surgery to remove my bottoms. Which, now that I have Tahkzyro, I once more have to take on HealthCare shenanigans to try and figure out who gets the god damned honor of removing my teeth. As the ones I was referred to HAVE the damn referral… But they don’t take Medicaid. SEEMS THE INFECTION IN MY BOTTOM TEETH GETS TO STAY! Just get to keep draining that thing myself. GUESS WE ARE FRIENDS FOREVER, ME AND THIS INFECTED TOOTH! Though it is crumbling away like the rest. It is down to the gums now. Though, I would like the Firazyr so I can inject myself IMMEDIATELY upon noticing my throat swelling. Never been asphyxiated but something tells me it ISN’T ALL THE FUN AN END! Especially at twenty fucking eight. So you can see my troubles. That doctor is still great, and makes a good point, I just think I need to make myself a bit clearer.

The years feel like they become less and less about me finding my place in this world, healing, and learning but instead more and more about me working as quality control for a broken system with no desire to fix itself. With every passing event involving them, I feel less like a patient and more like the data point I clearly am. With articles full of professionals professionally talking about diseases and medicines without much mention or care for the patients. The ones who that was made for.

For patients like me to heal. Not for people to make money. That is a side-effect of the job they signed up for. To fucking CARE for your goddamn patients. Not be coerced into giving meds left and right (or taking them away as a debate on whether or not ADHD FUCKING EXISTS goes on) or whether you believe the name given to the collection of symptoms I show. My disorders are not Cryptids. I have blood tests, medical papers, and diagnoses. Not blurry pictures of my blood viewed through a slide where fragments of the disease are seen peeking over their shoulder as they rush into a forest of red blood cells.

My particular disorders that I had since birth (ADHD and HAE) were caused by my body’s INABILITY to produce something. So if someone who CAN produce it takes it (least in the sense of ADHD as I doubt anyone else will benefit from a c1-inhibitor. No more than insulin if they aren’t in need of it like a diabetic) then of COURSE something different will happen. Of course, they might get high. That is not my fault as the patient it was made for.

As the point I am trying to make is that I do not feel I have been treated as a patient, I feel I am given more paperwork and calls than a cubicle worker. I feel I have to study more about the laws and practices to keep myself from being further burned. In between the Madness. The Pain. The Suffering that ALL OF THIS has inflicted on me. In between the new disorders this has caused me, particularly my obsession.

All I can think of is how to fix this. How I keep seeing articles, posts, and websites full of cries for help at a broken system. Of people fucked over, lacking their medicine, and the only ones getting the fucking attention are the dipshits who thought that taking someone else’s necessity would be a good way to get high. A good way to ‘focus’. To ‘relax’. While you use that as a fucking excuse to let people like me suffer, and further excuse it by brushing us into a group of people who just ‘slipped through the cracks’.

This obsession has grown now. Especially from the subject of the next article, ADHD meds from the perspective of someone who was one them from the age of 5, had them taken somewhere between the ages of 16 and 20 (my memory is incredibly hazy in this period thanks to the damn medicine being taken away) and getting only mild relief from marijuana replenishing my Dopamine… But that isn’t all Marijuana does nor all ADHD needs. I FINALLY am being treated, though it is just beginning. Still need to find MY medicine. It only took a decade for them to admit they were screwing with me. The lengths of my rage, again, is the subject of the next article.

This one was about how this madness turned me into someone who believes his job is to be a Professional Patient. Being talked into long commutes, long waits waiting for a doctor who will drop you for being late when they are constantly 45 to an hour late. Constantly filling out paperwork and debating about the fact my problems EXIST. Being treated as too young to be suffering. To the point, I don’t know what else to do. When you are too fucked up to work, explained in an earlier article, too fucked around for college, and the only thing you can apparently do is smash your rage against a keyboard and hope spreading your story around for no one to read will get something done.

If not? Then no matter what happens. If I die from malpractice or my disease, if I am killed, if I am silenced. My words on how this bullshit has made me feel will be, hopefully, somewhere.

The internet is notorious for being difficult to clean thoroughly, after all. If you do a little light digital legwork with the intention of being annoying as all hell. Especially since I got denied for disability again. Next time, I have to go to federal court apparently. JOLLY GEE GOODIE.

#nonfiction #Medicaid #Hereditary Angioedema #genetics and heredity #disability #us healthcare #us health insurance #reno #renown #suffering #blood disease #disease #rant #medical malpractice

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not-poignant · 3 years

Note

Speaking of the stomach symptoms that Ef has to go through, how do you cope with your own symptoms and do you have any protips for dealing with the pain?

Hi anon!

This one's tough, because the cause of the pain can be so multi-factorial. Digestive issues - for the best pain treatment and management - require:

1. A diagnosis 2. Understanding your allergies and intolerances*** (and they are not the same thing) 3. Understanding your triggers

The thing is, a diagnosis can be as good as a cure for some people who are lucky enough have treatable digestive conditions. A person with a finicky digestive system who learns they're gluten intolerant has a cure, even if it's not an easy one (avoid all gluten - symptoms and pain gone! Huzzah!)

Anyone who is having difficult digestive times should, imho, never just leave that as something to self-diagnose and just accept. I get diagnosis is a matter of privilege in some cases, but where it's not, this is one area where you don't want to fuck around and find out. There are literally hundreds of different things it could be, all with different treatments, medications, options, and supports out there. And I do know people who've ended up with severe autoimmune conditions and losing like, feet of their intestinal tracts, or cancer-like conditions, because of chronic diarrhea in particular, because they just 'waited' on the pain they were experiencing in their digestive tract.

And then the rest of this post is mostly like, 'I can't help you because bodies are diverse and 'stomach symptoms like Ef' means hundreds to thousands of different illnesses and hell, I've suggested pain management techniques in that story that you can try right now, and also I can't tolerate any pain treatments so good luck anon but I got nothing.' But like, the long scenic route version.

I can't speak to your issues, anon, because I don't know what your diagnoses are. There's not really many 'idiopathic digestive issue' diseases, but there are a lot of chronic illnesses that can be diagnosed through exclusion that can't be cured. But again, of those - and there are many - I don't know what yours are. And what I have, may not apply to you. It may not even apply to someone with exactly the same symptoms I do.

A person having Efnisien's symptoms could just have some intolerances that could be easily cured by avoiding those foods. Another person might have cancer. Like...you'd be amazed how many diseases cause non-specific and painful cramps and diarrhea. Sometimes it seems like all of them can.

For example, one of my many digestive illnesses is severe medication resistant gastro-esophageal reflux disease. Everyone in my family on my mother's side has it to varying degrees.

My grandma has needed to have two Nissen fundoplication surgeries to survive it, and has taken a proton-pump inhibitor since they were invented to manage it (since the 1980s), and because she's been taking a PPI for 40+ years, her stomach is now also riddled with hundreds of (so far) benign polyps and cysts as a result of the medication that she must take.

She avoids certain foods that I don't have to avoid, but I also need to take more medications than her, my food triggers are different to her food triggers, my brother's food triggers are different to my food triggers and he has the same disease and presumably, with a very similar genetic make up because it comes through the family line. His is very severe like mine, and nearly caused esophageal cancer for going so long untreated (the medication to treat has side effects, but leaving medication-resistant GERD alone can cause cancer of the throat and esophagitis, which my brother has been diagnosed with). My sister also has it. My Mum's is very mild, and she just has to avoid certain foods but needs no medications. And so on and so forth.

So how I manage the pain of just that one digestive disease - for I have more than one - (PPI and H2 receptor antagonist, certain food avoidance, no NSAIDs at all) is different to how my grandmother manages the pain (two surgeries, food avoidance that I don't have to avoid, PPI only), is different to how my mother manages the pain (food avoidance only, and different foods to me), is different to how my sister manages the pain (heat packs). Even the specialists we see are different, and our doctors suggest different management protocols. In that sense, I'm lucky, because my GERD can be medicated and I can generally enjoy eating and not choking on my own stomach every single night. Though I still have 'breakthrough days' where I do wake up choking on my own stomach acid, and have a sore throat / cough for the rest of the day.

So like, I can't take anti-inflammatories for the pain because that affects the stomach lining and mine's already fucked from GERD, but you might be able to. I can't take Buscopan for the pain, but you might be able to. I can't take Immodium on bad days, but you might be able to! Don't get me started on opioids or tramadol, it is very much like my body wants to suffer sometimes, the way I can't tolerate meds that are specifically for pain management. :/ I highly recommend looking up some support groups for the diagnosis/es you have, and seeing what people are recommending.

Because I don't tolerate almost all painkillers, I can't take any pain relief for my digestive illness/es (of which there are like...four, not including doctors thinking that my genetic cancer is causing some of it too, which is just a whole lot of oh well) that isn't just paracetamol (acetaminophen) which doesn't work.

There are no medications that help my chronic diarrhea at the moment, because it doesn't seem to be an autoimmune disease (at least so far, despite flagging for mild autoimmune stuff in every bloodtest I've ever had since I was 18 years old, but that's another story), but if yours is autoimmune in nature, there will be options that aren't pain-medication that may help you, and anything that helps with symptoms also, by default, helps with pain.

Some of my symptoms/pain is stress-triggered (my PTSD and my tumours can cause massive and unusual amounts of adrenaline to dump through my system, and one of the side effects of adrenaline entering the system is diarrhea - it's part of the flight/fight response: digestive disturbance). Therefore, less stress would certainly help me. But one of my specialists just laughed at me gently when I asked him how people stress less. You have to be awfully privileged financially to even try, even without a diagnosis of PTSD. And my tumours will still likely do this to me for the rest of my life, whenever they just feel like manufacturing hormones. They're neuroendocrine tumours, they want to fuck up my hormonal system, lmao.

Basically, anon, your question is kind of too vague to suggest much more than what's in Falling Falling Stars - perhaps some pain killers, perhaps some food avoidance, perhaps some heat or cold packs. Who knows? I have no idea what your diagnoses are, what you can tolerate, and I know what other people use for support, I can't, so I can't speak to how good those things are.

I'm going to level with you, anon. I have no protips for dealing with the pain aside from sucking it up and dealing with it, because I have almost no other options myself except to develop a high pain tolerance (which I have, which is terrible, because it means I wait too long to see doctors for very serious issues, and this has fucked me over more than once - one of my specialists literally yelled at me for it only last year: 'WHY DIDN'T YOU COME IN SOONER, DO YOU NOT TRUST US' which was great).

I'm really hoping you are not in my situation, because my 'dealing with the pain' is a version of 'I am in moderate to significant and sometimes severe pain 24/7 and no one can do anything to help me.' I wish it was only my digestive issues causing that, but the Fibromyalgia is certainly part of that. Sometimes the only way to deal with pain is to see a psychologist, and learn how to live with pain.

Find the support groups for your illness/es anon, they will have big personal lists that everyone is doing, they will be highly diverse and everyone will be doing something different for pain management, from ketamine infusions, to low-dose naltrexone, to ultrasound therapy, to heat packs, to a billion different medications, some for pain, some for your diagnosis. Having a diagnosis will help, because there are medications for specific diseases and disorders, someone with Crohn's will be on a very different cocktail of drugs compared to someone with IBS-D type compared to someone with IBS-mixed type, compared to someone with food intolerances.

And if you're lucky, your issues will be caused by intolerances, in which case you have a cure, even if it's an inconvenient one. But that cure (avoiding the food) can permanently remove the pain in some cases.

I'm sorry I can't be more help. There's just...thousands of things that can cause diarrhea and stomach cramps, and thousands of ways to manage those things. It's too nonspecific, beyond what I've already suggested in Falling Falling Stars. And anything more than that comes with side effects, and it's not good to already strain a digestive system that's strained, when you can potentially avoid it.

*** Please remember that there is almost no way to know your intolerances except through a food elimination diet, and anyone trying to sell you a blood test that tells you otherwise (i.e. naturopaths) is a fucking charlatan. There are, I believe, only 2-3 intolerances that can be read through blood test, one of them is lactose. There is no such thing as an accurate 'intolerance blood panel.' And only an allergist can diagnose allergies (with the exception of coeliac and again probably lactose issues lol), and finally, allergy =/= intolerance. Elimination diets should be overseen with the help of a doctor or specialist or dietician, because they are difficult to do and can cause or exacerbate eating disorders and disordered eating. I am not a doctor, always talk to your doctor about this stuff first, if you're concerned.

#asks and answers #personal #dodgy advice #i'm really wary about going hard with recommendations #on teaching you how to mask the pain #before you have a diagnosis #i just know too many horror stories #of people who masked pain #only to be like 'oh shit now i have irreversible damage to these areas of my body'#or 'oh shit now i need a stoma'#and i know that sounds alarmist #but you know what #digestive issues *should* be pretty alarming #they are *not* something anyone should be sleeping on #hell they can be caused by endometriosis adhesions #and a friend of mine would *beg* you to chase it up #because she has needed multiple surgeries much later in life #because she just ignored her cramps #pain management is important if you're lucky and privileged enough to find it useful #but yeah don't ever let anyone convince you that sleeping on #regular digestive issues is like...a kind thing to do to your body #i'm sorry anon #i am the wrong person to ask for pain management #because even when i'm recovering from agonising surgeries #there's almost *nothing* they can g ive me lmao #i just have to deal with it

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ibuproffie · 5 years

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a manual for dealing w ppl who have food allergies (because sis is fed up)

hi there! i know this is not like my usual content, but this is a topic that i feel doesn’t get addressed as much as it should, and as a result, people without allergies are not informed as to how to deal with us of the overexcited immune systems. as someone who has been very severely allergic to eggs, tree nuts, and peanuts for eighteen years, here are my personal pointers on how to be kind and helpful to your food-allergy affected friends! i’m also gonna try to clear up some misconceptions about food allergies in this post as well.

firstly, erase the idea from your mind that food allergy sufferers have “first world problems” or “food allergies are just a white people thing.” food allergies are on the rise all over the world. they are also not a new thing; they’ve even been recorded in history! also, food allergies are NOT the same thing as being a vegan or vegetarian. these options are a choice; some of us can actually die. it’s not a trendy fad for white hipsters; it’s our immune systems treating certain food as a threat.

many people have food sensitivities. this is not the same thing as having a food allergy. for example, when my mom eats a lot of bread-based carbs, she tends to get a stomach ache. however, she does not have a diagnosed allergy to wheat. if you think you have a food allergy, see a doctor, specifically an allergist. unless you are diagnosed by a doctor (not web md or a variant) you do not have an allergy. do not say you do.

if you do not like a food, do not lie and say you are “allergic to” that food. *bo burnham voice* didn’t think i’d have to write that one down for you... this is petty and draws attention away from people with actual food allergies.

not everyone will immediately, like, die if they eat a peanut just because they are allergic to peanuts. there are different levels of being allergic to food. not everyone needs an epi pen. these people STILL HAVE FOOD ALLERGIES and their wishes to not have an allergic reaction should be respected as well.

if you are serving food to people with food allergies, do not decide to play scientist and serve them food they are allergic to. don’t be a dick. people could die.

don’t cross-contaminate! that is, if you’re cooking for someone w allergies, make sure utensils don’t have traces of the allergen on them. (i.e. if you’re cooking for me, don’t use the frying pan you made huevos rancheros in two hours ago unless you wash it thoroughly). when labels say “made on the same equipment as...” this cross contamination is what they are referring to. don’t take the risk and serve it to ppl w allergies. we could still get sick.

yes, touching us with traces of allergen on your hands could lead to us getting a rash or getting ill. it’s not all eating, you know.

no, you can still eat peanut butter around me. i can’t get sick from airborne peanut particles, even in an airplane! (this has been disproved multiple times so don’t come at me; do your research, alarmist moms! literally every allergist will tell you that’s bullshit as well.) you may have heard of ppl w peanut allergies going into anaphylactic shock on airplanes, but that was likely not because of peanut particles in the air, but coming into contact with peanut residue on surfaces. still, don’t be that dick eating peanuts on the peanut-free flight. even if it’s a dumb precaution, it is making people feel safer.

we really don’t care that you would “kill yourself” if you couldn’t eat pizza or something we mention you can’t eat. i’ve lived a long healthy life without birthday cake and i don’t really feel suicidal because of it. you don’t have to express your sympathy in such a...clumsy way.

speaking of which, read labels carefully before you offer anything to us! i once got super sick off of some cheese from costco that my dad got and then i realized the cheese had egg in it (sounds fake but ok).

we might not want to eat your homemade food, preferring pre-packaged food or something we brought from home. that is not because we are picky eaters. it’s just because it’s hard to control cross-contamination in a kitchen (especially if you’re not used to cooking for people with allergies) and companies are legally obligated to report their ingredients. don’t be offended and don’t pressure us into trying your food.

the only reason we talk about our allergies so much is so you won’t kill us. it’s not a ploy for attention.

we can outgrow our allergies. that doesn’t mean we never had them in the first place.

we love love love it when you make us food we can eat! seriously, nothing means more to me than ppl telling me they made me egg free nut free cookies :) but don’t stress it if you can’t think of any options.

#ari.txt #food allergies #food allergy #food allergy problems

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