#that immunosuppressed life got me stressed

[coridallasmultipass]

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[majulians-groupie]

HEEYYY yall this is my first ever headcannon post,I know I am super late to the fandom,I haven't been here since middle school but I replayed the game again and I MISSED MY DUMBASS CHAOTIC THEATER KID DOCTOR🥺✨️✨️

•Sooοο..I am having a lupus flare and I lowkey need this so yeah this is for all my wonderful people that deal with chronic fatigue/pain/illnesses in general,we got this babes😭✌️✌️

 

♡Julian,and Asra with an MC that deals with Lupus♡

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✨️🐦‍⬛✨️🐦‍⬛Julian✨️🐦‍⬛✨️🐦‍⬛:

Well,one could definetely say fighting the devil,saving the world, AND learning that you died but been brought back to life is more than enough to make a healthy person stressed and tired.Well...let's just say than in your case you needed a minimum of a few days of a well earned break to deal with your after-chaotic-route-events flair.

That's when you first made a real discussion about that autoimmune disease you were telling him about,(he was trying SOOO hard to learn more,always asking you details as discreetly as he could ,but you wanted to have a proper discussion with him about it,and the events of the route kinda got in the way)

•Good thing about him being a doctor:He generally knows what Lupus is and understands how it can affect you in your everyday life,so you don't have to explain much to him.Additionally, you wont have to worry about scaring/shocking him when it comes to your symptoms( 95% he has heard of them before,not that it still doesn't kill him  everytime he sees you going through them tho)

•Bad thing about being an anxious doctor is: HE ADORES YOU TO BITS,so he freaks a little bit out at first,exactly because he understands the seriousness of the situation

He tries to appear calm so as not to not freak YOU out (he knows that would only be worse for your health,since anxiety and autoimmune diseases are a really bad pair),but you could swear you could hear the gears up in his brain overworking themselves

•Darling...I had no idea (mesmerized that you were kicking the devil's AND lupus' ass at the same time)

•Let's be real here though..we are talking about the person that successfully amputated another person's arm as a teenager and saw the importance of blood in diseases WAY beyond his time.This man is canonically a genius,so yayy you have the best healthcare professional at your service (shall I remind you of the little detail that he also ADORES YOU TO BITS and would work his ass off, just at the hope of discovering something that would provide some improvement/relief on your symptoms)

•He went as far as to consider changing his medical field,but that's where you had to overstep and gently remind him the boundaries between him being your partner and him being your doctor.

You explained to him that there is no reason for him to abandon his life's work (blood researching) and that you would hate to see him leave from a field  he is really passionate about, just to make his life's goal and obsession around you

•He begrudgingly sees the reason behind your words and wont insist,but won't stop studying medical books,staying up to date with latest medical researches,and generally knowing almost as much about the disease as a rheumatologist does.

•However,It takes him a while to find the balance between caring for you as a partner,and caring for you as a doctor.He is constantly doting on you and being overprotective,because he has knowledge of every single thing that could go wrong.If you are on immunosuppressants,flu season makes him PARANOID.He can get a little bit overbearing at times,but you can't get mad at him because you know that only happens because he cares so deeply about you.If he gets too much for you to handle,you have a calm conversation where you explain to him that he needs to trust you more and that you know how to take care of your own body and it's needs.

*-Honey you don't need remind me to take my pills every 30 minutes,and me sneezing once does not mean I have the flu!*

•He finds the silver lining by prescribing to you *-all encompassing- warm,soft hugs and a thousand kisses*.Even though he is usually the little spoon,if you are in pain,he cradles you in his embrace,humming pirate tunes to you,his chin resting on your hair to make you calm and get the rest you need (ironically,he is very strict about your sleep schedule,which you make sure he follows as well,overall a win-win situation)

•If and when you need an arthrocentesis,he will insist on doing it himself just to be sure (even though doing a procedure like this on a loved one would stress him the fuck out).It's not that he doesn't trust your doctor,it is just that he hates not being in control of important situations,let alone one that has to do with your health.If the rheumatologist does not give in ,he will politely ask to be in the room with you,both to provide emotional support and calm his nerves by making sure everything's going well.

*Unwillingly creeps the rheumatologist out by watching at him like a hawk,his grip on your arm changing from soft to trembling to almost painful, *he feels so bad about it afterwards*

•He makes sure your house is always stocked up with every medicine you may need (ofc you have triple of every box),a cooling area if you are prescribed shots,top quality mobility aids(joint braces,bandages etc) and everything else you use to assist your symptoms

•Pepares you warm baths for joint pain relief with nevivon's best salts (and constant excursions on nevivon's springs if you wish)

•Generally amazed at how you well manage and handle everything about your disease.He has seen enough on his adventures to know how to judge a real badass,and you are definetely one in his book

🦊🔮🦊🔮Asra🦊🔮🦊🔮🦊

•Since you were so close,you had told him about your disease way before the events of the game and he admired you so much for your strength,his heart breaking every time you have a flair.He is always able to see through your mask,when you keep trying to hide the fact that you are in pain.

•However unfortunately,seeing your friend/friend with tension/lover (depends on how  you imagine your MC's past with Asra) going through something and taking care of him while he is non-verbal and not remembering anything about the world is 2 total different things.

•Things were hard at first.When you first came back,you were constantly stressed,overwhelmed and generally terrified.This induced a lot of flairs,which was also something you couldn't understand but had to process.He would know you would experience a flair/symptoms by either seeing you sleeping unsually much,or at worst finding you having an anxiety attack or tearing up because you would have some sort of new pain that you couldn't understand how  came to be.He would hold you in his arms,whispering sweet nothings until you calmed down,and then he would patiently try to understand where it hurts and how he could help you.

•Had to basically research everything about the disease from the start.He did the mistake of trying to not involve any doctors because he didn't know how to explain the situation of you being at that state.However, seeing he could not help you with only remedies and magic, he found a rheumatologist he trusted and told them that you suffered amnesia from a spell that had gone wrong,never dwelling into the subject.

•If you are going through a mild flair that allows you to go through your day,he will randomly come and hug you from behind,kiss your cheek and ask you if you are ACTUALLY aware of how strong you are.

•Never one to mansplain you about your disease,but he can get really annoyed if he sees you unnecessary overworking yourself

•It actually was the reason of the first  real arguement you had as a couple.

*-Sweetie,I love you so much,and I am so grateful for your love and concern,but you can't just tell me that you know better than me about how much I can take

-*sighs*

I am just telling you that you don't know how much toll something can have in your system.

-I happen to know my own body,thank you very much

-I just don't want to see you in pain!!! *Snaps,visibly upset,since he knew how bad a flair can be from back when was taking care of you*

-Why don't you take one of your little trips to save yourself from the burden?

*Generally hurt and guilty because of the times a flair happened midwhile he was gone*

-I...*sighs and leaves the room with you realizing you took it too far*

Since you both have valid points,you end up calmly talking things out,you agreeing to not push yourself to the limits ,and him making less and more discreet interventions.

•If he knows something,is how to make an environment relaxing.Your home is full of soft pillows,blankets and candles,ready to create the perfect atmosphere for you to relax when necessary.He also taught you how to medicate to regulate strong negative emotions to limit them from triggering your symptoms.

•Firm believer of the fact that magic and science can be used together when it comes to healing.Teaching you some very useful pain relieving spells,cooling spells for when your joints are inflamed, and recipes for many herbs and homemade remedies for any vitamin deficiency caused by your medication

•His cooking is the only food that is still tastes good after cutting salt because of prednisone.He knows how to use  spices,you could barely tell the difference.

•Generally seeing the process you made,going full independent like you used to,never letting your pain take your spirit down and fighting lupus off like champ (FUCKING SAVIN THE WORLD)makes him the proudest person alive,secretly tearing up when he thinks about it.

So...

That was it guys,It was a little longer than I expected but this concept hits close to home so kinda had a lot to say.I wanted to have a Nadia in this post as well,but her headcannons lowkey turned into a one-shot,so I will post it separately.I hope you liked it🩷🤍.

✨️Feel free to ask me for headcannon ideas you would like to see✨️

Eva♡

[crippleprophet]

hi i was wondering if you or any of your followers had tips for dealing with chronic muscle pain (specifically hip and knee).

nothing i’ve tried has seemed to help (pt, otc pain meds, ice, heat, rest, acupuncture, cbd lotion, epson salt baths, stretching). and i’ve peen told that the only pain meds that would help would be narcotics (which i can’t take due to family).

also everybody has seemed to circle back to “it’s because of your mental health that everything is shit”. and doctors refuse to do any tests past moving my legs around and poking at them.

so i will try almost anything. thank you

i’m so sorry you’re dealing with this, i have chronic muscle pain & i know it can easily be so debilitating. regardless of whether there’s a relationship with stress or whatever, your physical symptoms should still be fucking treated! the abject cruelty of not managing your pain aside, it’s almost like it’s harder to handle mental experiences when you’re in pain all the time… you don’t deserve this bullshit & i’m really sorry 🖤

i am suspicious of your being told that only narcotics would help tbh — i don’t doubt that many folks need narcotics to effectively treat their pain, & opioids have definitely been the most effective treatment for me when i have access to them (although more for nerve stuff than muscle) but there are definitely medications you haven’t been offered yet that might be helpful.

idk if you suspect that your muscle pain may be related to chronic illness but my muscle pain (including what was dismissed as untreatable fibromyalgia symptoms) improved dramatically when i got on an immunosuppressant (hydroxychloroquine in my case). if you haven’t gotten a basic rheumatology blood panel done by your GP it could be worth a shot as my elevated inflammatory markers led to that prescription even though i’m definitely underdiagnosed.

i’m also like, really pissed nobody’s given you a muscle relaxer jesus christ. i’m on 4mg tizanidine from my PCP & it’s been immensely helpful for my muscle pain, i choose to take it probably once a week because it’s more effective at knocking me out all night that way lol but i also use it as a rescue medication when i’m having severe cramps. really helpful to just get a fucking break & some decent sleep every so often. in that thread i’m planning to ask about starting prazosin at my next appointment, it’s prescribed for nightmares (which i def have lol) but can prompt a certain level of muscle relaxation which is part of how it helps with sleep

idk if this is an option for you due to family etc but delta8 (weed equivalent that’s technically legal in the US) has been vital for managing my own pain. expensive as shit but so it goes.

idk if you already use a mobility aid or if that’s an option for you but it could be worth looking into! redirecting some of the force applied to your muscles might make things like walking easier or could help with balance if you experience sudden weakness / cramps.

super depends on your situation but it could be worth paying attention to your feet as well, getting plantar fasciitis house shoes vastly improved my knee-hip-back pain, knees in particular. mine was more joint related than muscular but from studying biomechanics it’s all interrelated & from my perspective anything that helps may make it a bit easier to keep going until you find a better long-term solution. so even if it doesn’t seem related to your pain if there’s anything that might make your life easier right now i encourage you to consider it!

other folks feel free to respond with things that have been effective for you! i really hope you find some solutions that make things more bearable for you 💓💓

[senselessalchemist]

CW: blood and medical stuff

It is just over 7 years now since my diagnosis with an autoimmune* disease (~10 years since symptoms started) and I don't really have anything profound or useful to say, but A) don't let people tell you it's just stress without any further testing if you have unexplained internal bleeding and B) if you literally can't stay awake because you've been bleeding for a few months straight, don't listen to the PCP who tells you not to go to the hospital because your hands are too pink and rosy for you to actually be anemic and there's not much the hospital will be able to do for you anyway

Two-ish days after that appointment I was in the hospital and almost immediately getting a transfusion because I was so anemic. (I would end up getting a 2nd as well because continued bleeding + already low on blood = first one not enough.) Stayed there for almost a month until they got the bleeding under control.

This could have happened to anyone but it's hard not to think that being afab probably had something to do with the downplaying and dismissal of symptoms for 3ish years before being diagnosed. They did the classic "it's probably just stress" because I was a senior in college (and possibly because afab). I don't want to make this a never trust medical professionals kind of thing, because there are many good ones and some of them probably saved my life and/or prevented me from having major surgery (which turned out not to be necessary at the time b/c the med they tried started to work)... but also when things are obviously wrong and especially if they recur (like unexplained bleeding cropping up again and again over years) maybe don't take "it's just stress" as an explanation. Also fuck the doctor who thought he could diagnose anemia or lack thereof by hand color and who advised against further treatment ("just wait until your specialist appointment in a month!")

*there does seem to be some debate about whether my particular condition should be classified as autoimmune or not, but enough people do at this moment I'm just gonna go with it because it's treated like many autoimmune diseases are, with various immunosuppressants or immune system modulating medications

[labec99]

An exercise in futility

Finally got to talk to a psychiatrist about my adhd situation. Except:

They can’t even prescribe me actual adhd meds because it’s through an app (because my insurance said hey, we care about your mental health, so you can do this for free if you use this app! but what use is free if it doesn’t actually do the thing you need it to do??)

So even though I said Hey I’m pretty fucking sure I have ADHD and here are all the symptoms I’ve had my entire life and how they’ve been exacerbated by the pandemic and can we please address this

He just kept trying to prescribe me anti-depressants 

Which in and of itself is not a bad thing, anti-depressants work wonders for those with depression

Except I know what my brain feels like when it’s depressed because I went on hormonal birth control many years ago and it royally fucked my brain up to the point where I could not be on them, even after trying to let them level out for 6 months. It was quite literally the only time in my life when I had unaliving myself thoughts, and I don’t feel like that now. I know my brain and the differences in it.

If anything I have mild situation depression because HELLO WE ARE STILL IN A FUCKING PANDEMIC THAT HALF THE WORLD WON’T TAKE SERIOUSLY AND THAT CONTINUES TO PREVENT MY INDUSTRY THAT I ENJOY WORKING IN FROM COMING BACK TO FULL FORCE SO I’M ALSO STRESSED ABOUT LATE STAGE CAPITALISM AND TRYING TO MAKE ENOUGH MONEY TO LIVE IN THIS STUPID OVERPRICED TOWN AND ALSO THROW IN SOME CLIMATE CHANGE DEPRESSION TOO

So medication that helps with clinical depression will not stop the pandemic on a global scale or any of those other issues

Yeah I probably have anxiety, but also half the reason I have anxiety is because I’m so frustrated with myself for not getting shit done when I have free time because *surprise* Executive Dysfunction is a bitch and also, ya know, a textbook symptom of ADHD

Also when I asked about contraindications on the SSRI’s (and he was like, oh shit she actually knows things, because I’ve had an autoimmune disease since I was 12 and have to be on top of my medical history and anything that might interact with my immunosuppressant) and he was like, there really aren’t many, I immediately started doubting him, because you can’t even drink fucking grapefruit juice if you’re taking SSRI’s, and also your skin can become more sensitive to sunlight (which, considering I have an autoimmune disease that entirely affects my skin is kinda a concern for me) so, yeah, it does actually have a lot of contraindications and side effects so if you can’t even talk to me honestly about those, how am I supposed to trust the rest of your medical advice?

What a waste of my time. 

He even went out of his way to talk about how adhd presents different in men and women and that’s why women tend to be less diagnosed, and then proceeded to tell me that my symptoms didn’t necessarily sound like ADHD because I got good grades in high school. As if needing to overload myself to have so much structure that I literally didn’t have the choice not to do things is a healthy coping mechanism or something.

Like, Fuck you dude. You literally said the problem out loud and then just streamrolled on continuing the problem yourself. wtf.

[purpleyin]

This week has been ugh and one of the things bothering me was difficult decision to make, covid related kind, and a heavy topic so putting it behind a read more.

The housemate and I have been shielding for most of the year now, mainly for my immunosuppressed benefit, though he’s at some risk too. Housemate’s parents obviously want him home for Christmas and he wanted to find a way to make that work because he is a people pleaser. We talked about a plan for that and I wasn’t 100% sold on the agreed plan as it still had risk, was still thinking it over and got told I had a veto on it.

Fast forward to this week when it came up again, because I was like shouldn’t your parents be already doing their part of it... It turned out the plan we’d talked about, and I thought I’d been plenty clear on, my housemate had a very different understanding of. I expected it was: his family isolating for 2 weeks before picking him up (to avoid public transport) and all isolating whilst there and dropping him back after.

But his expected plan was just they pick him up without having isolated (because work/food delivery situation prevents that, which was news to me and never before mentioned during the discussion) and he is there for about 14 days. And yeah, hearing that spiked my heart rate. That plan didn’t work for me at all because the longest incubation is 14 days so not even any wiggle room there. Talked about maybe extending that to 16 days isolating before he came back to hope symptoms would show, but I was still really uneasy with this and couldn’t pin down why, feeling a bit railroaded with the revised plan.

But I’d been thinking upon today after talking to some other friends dealing with similar decisions about holidays, and decided to use my veto. Because basically if his family managed to be infectious but asymptomatic at the time they pick him up, they wouldn’t know they’d passed it to him. And if he was also asymptomatic and infectious, having had a long incubation period of 14 days, then when he came back he could still infect me - I tried looking up how long people are infectious for once it’s active, but couldn’t find a good estimate, maybe 7 days, maybe 14, unclear. There’d be no way to avoid that risk without being able to get tested before coming back or having a much longer period isolated.

I feel awful being the bad guy in this scenario vetoing the whole thing, but when I put it in the context of do I want to risk death just so someone else (not even me) can have 1 ‘normal’ Christmas, for a holiday that’s arbitrary for them too, then it’s a no brainer. Of course I’m not gonna risk death for that. Especially not when there’s a vaccine on the horizon so it might only be a matter of waiting months for the meeting up to be possible without any risk. 

I knew the question was stressing me out to have it put on my shoulders, but getting down to ‘this is potentially a life or death decision I’m making’ explains why. I think after a whole year of seeing judgements and ‘debate’ about whether lives like mine are worth protecting, worth the inconvenience to everyone else, being asked to make this decision was honestly a bit too much for me, but at least I get now why it was making me panicked and wanting to cry.

[forgettingstegosaurus]

This quarantine is not a good thing for someone w anxiety disorders and a mood disorder and ankylosing spondylitis ok. (Overthinking death is near etc). And on a biologic. Like!!!! I’m not complaining per se cause I know people are legit out there dying and suffering while I’m just having anxiety cries.

But....

Like. Why. I just started my biologic a year ago!!! I just finally got diagnosed like 1.5 years ago when I’ve been trying to find out what’s wrong w me for like a decade! And now the Black Plague is here and I’m immunosuppressed. For. The. First. Time. In. My. Life. I. Finally. Have. Medicine. To. Make. My. Pain. Stop. Somewhat. And. Then. The. Black. Plague. Comes.

I think god is just up there laughing at me ok.

So I’m going to keep playing on tumblr, when I haven’t been on this site in what 3 years maybe??? Cause it reduces my stress kinda and like BABBLE BABBLE SCREAMS.

[afandomofthrones]

Something to Think About:

[I have been trying hard to avoid reblogging and saying things about Covid on here, mostly because it is everywhere else I look and I just want an escape from it all. But this is something I shared on Facebook, and it’s something I think we all need to keep in mind. ]

Lately I have been seeing a lot of posts on the importance or self-isolation at this time. Which is great, because it is needed. This disease may not be as deadly as some but it can be dangerous for many people. We self-isolate for the immunosuppressed kid that lives down the street. We self-isolate for the kind old man that you see every Wednesday at the coffee shop. We self-isolate for the people who are already battling other diseases, to which this one could be the tipping point for their health. We self-isolate for the good of the many. We self-isolate to try and slow down this disease long enough for us to get a better understanding of it and find the best ways to save people from it.

This is all important.

However.

There is something that I honestly haven’t seen people talking about much, and that is the dangers that can come along with self-isolation. Self-isolation is great for your physical health, but it can be detrimental to your mental health, and that is something we need to talk about.

I have been battling my mental health for over 10 years now. I have struggled with anxiety and panic disorders and depression. My goal in trying to overcome all of this, particularly in the last few months, has been to avoid isolation. In the past my anxiety put up walls around me and pushed everyone from my life. To the point where I would sometimes go days without even hearing my own voice because I was alone all the time. Recently, in the last few months, I have been working hard with my therapist to get myself out of isolation. To reach out to people and make new friends to let into my life. To talk to people and see people and to avoid being alone for long periods of time.

And then this pandemic hit.

Now, like many people, my jobs were both cancelled indefinitely and the government has instructed us to self-isolate. To only go out for essentials and to not see your friends and all that. This is exactly the opposite of what I have been trying to do. And my anxiety brain is thrilled right now because if it had its way I would shut myself in a hole and not talk to anyone for the rest of my life, just to avoid the fear. But the danger that comes with that is that isolation can lead to depression. I know that in my case this is very true. Isolation has led me to dark places, to suicidal tendencies, to those deep terrible places that seem impossible to come out from.

I know I am not alone in this, and that is what scares me. There are millions of people around the world who suffer with their mental health. People who are going to be struggling with the isolation and who will find themselves falling back into depression. For many people, when this pandemic all blows over, they will have to start a new battle. A battle that they have fought before. Hell, even people who have never had to struggle with mental health may find themselves struggling after all of this blows over.

So, what exactly am I saying? I am not saying that self-isolation is bad. I am not saying that people should break quarantine for their mental health. No. What I am saying is that we all need to be extra kind to ourselves and to others during this time. We are lucky enough to live in a time when socialization doesn’t mean having to see someone in person. We can video chat and text and talk on the phone.  So, reach out to the people in your life. Send them a message or a text or an ask, check on the people around you to see how they are holding up. Send someone a random hello or say something nice. Because there are people who are going to struggle a lot through all of this. You never know just how much one little message could mean to someone. One little hello could be the only social interaction someone has had in days. One little hello could interrupt someone’s dark thought patterns.

This is a scary time. This is a stressful time. This is a time when we should all be banding together. Just remember that you are allowed to be upset right now. You are allowed to be hurt and scared, you are allowed to be angry and frustrated. You are allowed to be upset that things you were looking forward to got cancelled. You are allowed to be terrified of what is going to come next. You are allowed to be upset because you feel alone. It doesn’t matter whether someone in this world has it worse than you, your feelings are justified. Just remember that you are not alone, even in this scary time of self-isolation. In the wise old words of Zefron, We are all in this together.

Be kind to each other, my dears, and be kind to yourself.

<3

[the-fault-in-our-guts]

Hi I guess I’m a lab rat

INCOMING LONG STRESS RANT

So I’m doing my dietetic internship this year and I’m about to start my clinical rotation in a hospital on Monday. For those of you who don’t know, I have an immune deficiency and cannot make B cells/antibodies to fight infections, so I get IVIG subQ infusions every week to protect me and people around me. I also have Crohn’s disease and take immunosuppressants for it (haha). So because of all this, I can’t get live vaccines. And in case you don’t know, internships usually require updated vaccinations especially if you are working with a vulnerable population. So here is a chronical of what I’ve been dealing with for the past 4 months in order to get approved to do my rotation:

My school nurse is in charge of all the interns’ health forms, which were due mid-July. They required that you received all previous vaccines, such as Hep B, MMR, varicella, etc, 2-step TB skin tests (which I can get), a flu vaccine, and standard physical. I had received some vaccines as a baby before they realized I was immune suppressed but not all of them. I filled out the form and got everything done that I could and had my pediatrician write a letter to include with the form explaining my condition and that I’m protected by the medication that I receive.

My school nurse got all the documentation and, after consulting with the doctor at the hospital I’m interning at, decided that my pediatrician’s letter wasn’t enough. She wanted to talk to my immunologist and ask her specific questions, which I get. However, my immunologist was out of the office for a while on vacation and I couldn’t reach her when I originally asked for a letter (that’s why I then went to my pediatrician). So I contacted the immunoligist’s office and got her PA and asked if she could talk to my school nurse and answer any questions she might have. She agreed and said it was no problem. I filled out two release forms for my school nurse, one for the pediatrician’s office and one for the immunologist, so she could get any other info she needed.

I eventually received a call from the PA again. She said that my school nurse needed a lot of information and she was just going to write a letter explaining everything to include with my file rather than go back and forth with her. The only thing was, she needed me to get some bloodwork to go with it and sign a medical release form from their office. Which is all fine and good, but the form cost me $50 for whatever reason. I was like, okay, whatever, fine. I got the bloodwork done, paid the fee, and faxed the form.

Then, I had a meeting with my school nurse a week before the internship started. She said that everything was almost (almost!) sorted out with the hospital doctor. Basically, they were willing to waive my vaccinations if I met two conditions: if I filled out a Hep B waiver, and if I got the flu shot. For whatever reason, my immunologist said that I could get the flu shot since it’s a dead vaccine. I have no idea what the benefit is since I can’t develop an immune response from it, but oh well. I was getting pretty annoyed at this point with all the extra steps and fees, but I just smiled and nodded and got the stupid flu shot and faxed the record over. Also was pretty terrified cause the last times I got an actual vaccine was when I was 3 and I was nervous I’d get knocked down by side effects or something, but luckily that didn’t happen.

THEN, three weeks later, my school nurse called again on the Thursday before my clinical rotation was supposed to start. Apparently, she never got the letter from my immunologist that they were supposed to write after I got the bloodwork done. She said that something had happened with the bloodwork so they never wrote the letter. She told me that the doctor still was unsure about my condition and wanted to verify my T cell function. I had told her previously that my T cells are normal, but she said she needed it in writing from a doctor. They also weren’t sure if my TB test results were valid. So, she wanted me to go get a chest X-ray to verify that I don’t have TB. I’m super irritated at this point, it’s like everything I give her is not enough and they keep ordering tests. I asked her if I could send her the results of a CT scan that I had last July, but she said no cause it was over a year ago. So I was like, fine, just send the order and I’ll do it tomorrow, my last free week day before this whole thing is supposed to start.

THEN, she emails me and says she just talked to the doctor at the hospital and the previous CT scan results might actually work instead of doing the X-ray. She told me to contact my GI doctor that ordered the X-ray and get them to fax the results over to her. So I called the main GI nurse line and left them a very forced calm but urgent message explaining the situation. I didn’t think that this would work out since it’s always so hard to get doctors to do anything quickly (exhibit A: the failed immunology letter) but I also didn’t want to pay out of pocket for a chest X-ray not ordered by a doctor and therefore not covered by insurance.

The GI nurse got back to me the next morning and said that they faxed the results over to my school nurse. I was so relieved, finally something was going right! I emailed the nurse and asked if she got it, and she emailed back and said she did, but there was “important information missing” and she had called the GI nurse line back to try to retrieve it. She said she’d update me when she heard back.

THEN, some lady from my immunologist’s office called me. She said that she had just talked to my school nurse about the bloodwork that had...gone MIA? Been compromised? Lost? I don’t even know. Basically, she wanted me to repeat the test. I was super confused because I thought that it wasn’t necessary anymore since we were pursuing the CT scan results route. I asked her when she had talked to my school nurse about this, thinking that it was from forever ago, but she said she had just had the conversation a few minutes ago. So I was like...uh, okay. Fine. I’ll go get the test done. I was already out doing errands anyway. I didn’t know what it would accomplish since it apparently takes 2 weeks to be read. But whatever right?

I got to quest to do the blood test, and the guy looked up the test and the computer and was like “oh no, we can’t do this test today. It has to be done on a Monday-Thursday from 10am-1pm.” ?????? Wtf?? What the frick kind of test is this? I just stared at him and blinked and was like “okay” and walked out. I’m so over everything that’s happened that I don’t even give a shit anymore. I don’t know when I’ll get that test done seeing as my clinical starts this Monday and I’m doing M-F 8:30-4:30 every week until December. I’m just so done. I’m done being monkey in the middle between my doctors and this school nurse that I’ve never talked to before in my life until 4 months ago. I should be focusing on my learning and also my UPCOMING BUTT AND FISTULA SCOPE T_T I’m so stressed out and I want to scream.

Sorry about all that, it’s literally ridiculous and I do not want to deal with it anymore so I’m word vomiting it out here so I don’t snap and say something rude to a nurse that’s connected to my internship that could then give me a bad reputation. It sucks cause I’m so frustrated and stressed and upset and I have to suppress everything and let these doctors jerk me around just so I can go do my required clinical hours for the internship. They’re acting like I’m a walking time bomb going in there about to infect everybody. And it sucks cause I completely understand why they’re being so careful and I don’t blame them. But it’s so frustrating that everyone keeps poking and prodding and running all these tests and treating me like a lab rat. It’s so overwhelming.

[livingwithloops]

Lupus: The Misunderstood Suckiness

If you have to have a terrible disease, Lupus is a particularly shitty one to have. Not only does it make you feel horrible every single day, but to make matters even worse, most people don’t understand what it is or even really believe that it’s a thing. If you have cancer, people pray for you, run 5ks in your name, and make t-shirts with motivational sayings like “save the tatas” on them. When you have Lupus, people tell you that you should really work on a more positive mental attitude and make a five-year plan that includes a job that you’ll probably be able to do in spite of your inconvenient infirmity. 

 Don’t get me wrong, I didn’t know what Lupus was either when my daughter got it. I was like, “huh?” (Dumbfounded deer in the headlights gaze and all). I didn’t think Lupus was that serious, even though my daughter was currently, at that precise moment, at imminent risk of dying from it. Imagine the shitty luck–getting a disease that might really kill you that most people around you (including yourself) don’t even understand. At all.

 So here’s my effort to explain as an effort to illuminate the confusion. Let’s start with cancer. Cancer happens when a bunch of cells that aren’t supposed to be there begin to take over a part of your body that you need. Kind of like when there’s mold in your bread–you need to get it out (or throw the bread away so maybe that’s not a very good analogy but you get the point). There’s something there in your body that shouldn’t be there and the treatment is to get it out asap. Chemo, friends run 5K, everyone shows solidarity, and with any luck and the miracle of modern medicine, one is cured. 

 Contrast that with Lupus. Here’s where it gets tricky. With Lupus, your body begins to hate itself. Your body starts to think, for some inexplicable reason, that IT is the mold in the bread, the cancer cell, or a really bad bacteria. Your body starts to fight with itself, confused into thinking that it’s very own self is an invading and dangerous entity. So the immune system, designed to love and protect our bodies, goes rogue and tries to destroy it. Holy hell!! 

 The attacking and confused immune system has an assortment of organ systems to choose from and hate on…..some common victims are the kidneys, skin, heart, central nervous system, the opportunities are many. Therefore, the symptoms of Lupus vary accordingly. If your stupid Lupus attacks your kidneys, you have kidney problems. If it’s your skin in the crosshairs, you have terrible rashes. If it’s your brain, you have headaches that make you want to poke your eyes out. It’s a real picnic. 

 In spite of those varieties, almost every Lupus sufferer pretty much feels like shit all the time. They may not be actively vomiting, but you can be pretty safe in assuming that they might want to. Likewise, they’d probably rather stay in bed most days and can function only by exerting about as much effort as it would take for you or me to run around the block at top speed. Five times. It’s not easy.

 To add insult to injury, the treatments for Lupus are pretty stupid too. Basically, science hasn’t spent a whole lot of energy on Lupus yet because they haven’t had the funding (although it’s getting better), so the best they can do is just basically try to knock the immune system into submission using a variety of horrible medicines with evil side effects. You can take chemo (which doesn’t make your hair fall out in the Lupus variety and which you can conveniently administer to yourself at home), some assorted immunosuppressant drugs, (one of which is actually an anti-malarial drug that they noticed suppresses lupus, but also that might unfortunately make your retinas detach eventually), and of course the dreaded steroids. Those make you feel much better but generally cause you to gain forty pounds or so, so there’s that uplifting aspect of the whole thing to contend with. The steroids immediately brought my daughter back from the brink of death but I then had to explain to my mother that giving her the steroids SO SHE COULD LIVE WAS, indeed, preferable to her having to gain forty pounds right before her prom.

  It would seem more fruitful to try to figure out WHY a person’s immune system has gone crazy and make it stop being confused than to just stun it senseless–but what do I know? It’s clear that the medical profession has not had the advocacy of more “visible” illnesses like cancer and AIDS, along with the resulting funding that goes along with that visibility. Funding brings research, which brings answers, and along with that, a cure.

 But until then, let’s go back to public perception. I mentioned having to explain the “death/weight gain” conundrum to my mother. I also had to explain to her that Lupus is, indeed, a real disease and not something they just made up in the South (New Englanders tend to be a bit suspicious of anything that happens south of Atlantic City).  My mother was much more convinced that Lupus was a thing after Venus Williams was diagnosed with Sjogren’s Syndrome—because, after all, she played tennis and clearly was legit. Many friends, well intended all, were convinced that Elizabeth didn’t have Lupus, but was just “tired, stressed, overweight (steroids be damned), had a tick bite, needed to stop drinking diet Coke and eating Pringles”—the list goes on and on. My beloved sister sent us a juicer that cost more than my rent so that I could make her some organic soups that a particular doctor swore had cured many Lupus sufferers. Worse, there was a lot of judgment directed my way as her mother. I heard “how can you let her eat chocolate—that makes headaches worse,�� “I can’t believe you’re LETTING HER have chemo again” (because I was enjoying it so much), along with darker suggestions that I was actually causing her to be sick by indulging her pain (As an aside, I would like to challenge anyone to watch their child scream and writhe in pain and not “indulge” it by trying to make it stop. Just sayin’).

 So here’s the point. People DO NOT understand Lupus. It’s one of those weird things that has always existed but never been talked about. It’s usually moderately miserable, but if you have a case like my daughter’s, it’s epic and terrifying and life changing. It CAN NOT be fixed with soup, cured by acupuncture, or straightened out by the power of positive thinking. It is a horrible, chronic illness that can be battled into remission, lived with through good self-care and resolute bad-assery, and tolerated while a decent cure is hoped and waited for.

 That’s why I’m writing this. As a ridiculously optimistic cheerleader of a mother, I hereby declare war on the ignorance that surrounds Lupus and other “invisible illnesses.” I am resolutely determined that my daughter is going to live a full, beautiful, amazing life as a testament to the fact that this stupid disease can’t HAVE her. She may have IT, but not the other way around. So part of making that happen is dragging people’s head out of the sand and telling them what this thing really is. It’s a suckfest. It’s a shitty deal. It’s a super ironic dark metaphor for the fact that our minds attack themselves and our bodies can too—especially as women. Ninety percent of Lupus sufferers are women. Coincidence? I think not! We can hate our thighs as we look at them in the mirror or our immune systems can hate our kidneys on the inside. It may just be me, but I see a correlation. So as that cheerleader of a mother, I’ve done just about everything and anything I can think of to help my daughter. We’ve been to just about every major medical center that specializes in Lupus. We’ve tried every mainstream/not mainstream treatment anyone has suggested to us. I quit my job so that I could be around more and fight the good fight right by her side. That meant exercise, rehabbing our pantry, acupuncture, hypnotherapy, massage, psychotherapy, pain specialists, a trip to a facility in Utah that helped provide coping strategies when life’s pain proved just too much. For her. Not for me, although I think a trip out there might be in my future too. If you think it sucks being sick, try watching your daughter live in suffering every single day. It’s pretty much unbearable and has brought me to the point of dark depression and excessive wine consumption on many occasions.

 So don’t get me wrong….I believe in alternative treatments, holistic medicine, good nutrition, and most importantly, the power of prayer. I don’t discount those things for a minute and believe that miracles happen ever day, with OR without conventional medicine. I also think that people who are dealt the crummy hand of a chronic illness are tasked with a great burden—they must become an advocate for their own care. They should be vigilant about their treatment, their diet, their level of self-care. Unfortunately, it’s even more necessary for them than it is for the rest of us. Just one more point in the “this shit ain’t fair” column. But it is what it is. That said, however, Lupus patients (and those with other “invisible illnesses”) seem to be judged WAY more harshly for their occasional ice cream cone than the cancer sufferer would. The Lupus patient eating an ice cream cone would be looked at like a pregnant woman with a cigarette while the cancer victim would be praised for her indomitable spirit. Believe me, I’ve watched it happen. Bottom line—I’m a huge fan of self-care but also a huge proponent of NOT judging sick people for their sickness, for how they handle their sickness, or for when they occasionally come up short in the iron-will department.

 For after all, who among us can look inside our healthy bodies and honestly say that we have taken pristine care of every single cell, every single day, as long as we’ve lived…………..because by thinking that our behavior has created our health, we’re also kinda sorta saying that the sick person’s behavior has created their illness. And don’t go there. That’s REAL bad karma and just not nice.

   If you ask me, though, I can say with certainty that I will never give up fighting for my daughter. I know that about myself, I’m pretty stubborn. Now I’m ready to issue a call-to-action to the people around us. Because WE are not doing enough. Until people realize that they’re NOT.GETTING.IT—that they’re missing an opportunity to support and help and understand, then I haven’t done my job as her mother. Until people learn that they should reach out—invite your friend with Lupus to lunch or, better yet, bring lunch to her so that she can eat it in her jammies, until they understand, show compassion, and believe in what they don’t understand—things aren’t going to get better for people who suffer with these diseases.  Until we throw as much money at finding a cure for Lupus as we have for Cancer or AIDS or heart disease (worthy illnesses, all)—we will have left a lot of suffering people behind, feeling judged, alone, and responsible for their own disease. I can’t say it clearly enough—NO ONE judges the cancer victim or the person who  has a heart attack or AIDS—even though there are arguably behavioral or environmental components to all these diseases.  NO ONE criticizes them, their mothers, their doctors, or invalidates their pain by telling them to “power through it.” In fact, such insensitivity would be universally shamed and shunned by society. So why is it ok to do to the Lupus sufferer?

 Why not ask yourself that?

[desroundtree]

What Saves Us

If you don’t take medicine every day it is hard to understand how important it is.  I set alerts daily because I was at a point where I had missed enough medicine to be ashamed of the promises I made to take medicine I had simply forgotten to take.  It isn’t the rebel in me, it is not the non-acceptance of being sick.  I swear it is not the overall rejection of being broken or blue.  It is flat out forgetfulness.

When life feels like nothing but an uphill battle, you wonder how you got stuck with the never-ending staircase, so winding and tight in some places, it can steal your breath away. 

Autoimmune disease, in this case, Lupus, is treated with a variety of medicines.  Most are immunosuppressants or antimalarials that help with organ rejection.  What about those of us that don’t have organ transplants and have no fear of organ rejection?  We take it anyway.  We are fighting the good fight against a disease that has no cure.

I started therapy a long time ago in order to deal with the medicinal stress this has caused my body, but I can’t be brave about things that make me want to give up trying to survive.  Medicine that makes me so sad I can’t get out of bed or makes my pain so much worse I can’t get dressed.  Sometimes I can’t tell the difference between all the pain I am feeling and it becomes one big jumbled ball of shit.  

Even with all this, I think people need to know that I am willing.  You have to want to fight, to beat things that are determined to beat you.  Hard as that battle might be, it might be the one and only battle left for you to fight. 

No one’s fight is ever the same, and we all find the time to battle in ways that help us feel like surviving is the only option. 

[rubyingranite-blog]

“Most of what is considered #impossible is just a consensus of outdated beliefs.” #BernieSiegel

Reversing #MultipleSclerosis

Dr. #TerryWahls is the creator of the #WahlsProtocol, one of the healing diets featured on this website. She agreed to an interview with me, to share the details of her inspiring story.

Like many of us, Terry can look back and see early signs of her #autoimmune condition, before she knew the cause. As far back as 1982, she experienced occasional face pain and vision trouble, but she was young and strong, so didn’t spend much time worrying about it. She was a #Taekwondo champion in college, went on to complete medical school, got married and had a family. In the 1990’s her strength began to decline and she fatigued more easily, and although she found it frustrating, she chalked it up to age. It wasn’t until 2000, when she developed foot drop and began stumbling, that her wife Jackie insisted she go to the doctor, where she was officially diagnosed with #multiplesclerosis.

She saw experts in the field and followed the advice of her #doctors, taking both #chemotherapy and #immunosuppressant drugs, and still her disease progressed. Within 3 years, she needed 2 canes to walk short distances, became dependent on a tilt-recline wheelchair, and began to fear that she would eventually become bedridden. Her disease had transitioned to secondary progressive MS, the form in which people no longer experience #remission and instead experience gradual progressive worsening of #disability.

That’s when she began her own research. She tried the #PaleoDiet in 2002, and it slowed the progression of her disease, but didn’t reverse it. She then learned of #supplements that might benefit her condition, and they slowed the progression as well, but didn’t halt it. At this point, she wasn’t expecting reversal. Doctors have been taught that the abilities lost to #MS can’t be regained. Her hope was simply to stop her decline.

For years, she scoured the scientific literature, looking for answers. She started focusing on the #mitochondria, the #powerhouses of our cells, which convert food into #energy and help #detoxify the body. She came to believe that they were a key component in chronic disease. She isolated a group of 31 #micronutrients to feed both the mitochondria and our #brain cells and discovered which foods provide those #nutrients. From that research, she developed a diet which includes #9cups of #vegetables daily (a combination of #greens, #sulfur-rich, and #colorful) to meet those micronutrient needs. “That’s when the #magic started to happen,” Terry said. In 2007, she began a protocol which included this diet, along with a physical therapy program of exercise and neuromuscular electrical stimulation.

What happened shocked everyone: herself, her family, and her medical team. She started to improve, to regain her abilities. One year later, she no longer needed the #wheelchair and was able to ride a bike again. You may have seen the video of her #TEDtalk, which went #viral a year ago. Our interview delves into the details. She shares more about her personal journey, her research, and the diet itself:

Our Interview:

It’s been a couple of years since you did the TED Talk. Has your health continued to improve?

It certainly has. My friends, physician and family all tell me that I am #youthening: that I look younger and younger every year. This matches what I see in my clinic, as well. I’m sure I will begin to age again eventually, but as I reverse my condition, the premature aging that came with it reverses as well.

I continue to #bike, both to and from work, and also do trips with my family. I can bike 5 miles easily. If I want to go on longer rides with my family, I use a hybrid bike with a motor to augment pedaling, so I can easily maintain the same tempo as them. This gives me great joy, because that’s the kind of stuff I could do with my family when my kids were young. Now, I can do it again. I can also cross-country ski short distances, swim, and take short strolls.

Are you 100% cured, or do you still have MS #symptoms?

I think it’s important to convey that this is a #lifestyle change; it’s not instantaneous. It takes a long time for your body to repair damage that took 35 years to develop. It might take 10 years to heal that.

In the morning, my gait looks perfectly normal, but by the afternoon a #physicaltherapist could tell that my right leg is stronger than my left. I’m not sure that a layperson would be able to perceive that difference. I’m OK doing a mile stroll, but I get tired beyond that and at two miles, I have to sit down. I can lecture one hour fine, but get tired if I lecture two hours. My stamina is incrementally improving, but I’m certainly not yet at the equivalent stamina of another 57 year old in good health. These whole five years, I’ve worked with a physical therapist who I continue to see, and they keep advancing my exercise program, so I’m gaining both strength and endurance.

As your MS improved, did other areas of your health improve as well?

Yes, I had some asthma, so if I got any viral activity, I was likely to have an asthma flare which would require both steroids and a nebulizer. Since changing my diet, I have absolutely no need for asthma treatment.

Is it hard for you to stay on the #diet?

#Travel is the hardest for me, because it’s difficult to have access to the food I need. I scope out #restaurants in advance and bring a lot of my food with me. However, several months ago, I consumed food at restaurant that I didn’t know had gluten and dairy in it. 48 hours later, I was incapacitated with face pain. That really is quite horrific. That makes it very easy to stay #motivated and stay on the diet.

I observe that about one-third of the folks with MS are more likely to have an acute reaction to problem foods. 

***But the other two-thirds will slowly dwindle over the weeks that they reintroduce the bad food.*** 

For this second group, it’s much harder to stay as pure on the diet as I do. 

My consequence is so unpleasant for me and my family, that there is no one in my family saying, “Here, you can have just a little of this.” They’re all label readers now.

Speaking of your family, were they supportive of your diet from day one, or did they take time to get on board?

On day one, my family took all the stuff out of the house that wasn’t compliant for me, but they ate what they wanted when they were out of the house. After a while, I tested them for food allergies and showed them the results. My wife is gluten-free and dairy-free, but not grain-free. However, she’s very active and healthy, and can tolerate the carbohydrates well. My children both feel better when they’re on the diet. My son’s allergies and asthma went away, and my daughter’s migraines and struggles with moods went away. Now that they’re both grown and out of the house, they’re learning how to stay on the diet away from home. My son travels as a speaker, and my daughter is at college. They have both experienced a return of their symptoms when they’ve gone off the diet, so they know the power that food has.

Are you on any prescriptions any more?

No drugs that modify disease activity. Nothing that would impact my immune system in any way. However, pain is a symptom for MS. I used to be on very large doses of #gabapentin and #amitriptyline for #pain and would still end up in the emergency room twice a year, with unbearable pain. Now I only take very small doses of gabapentin, and occasionally #baclofen, if I’ve had a very active day.

I would love to hear more about your #meditation practice:

When I was an undergrad, I learned #TranscendentalMeditation and did that all through college. I stopped during med school. Then I was diagnosed with MS in 2000. In retrospect, it’s quite interesting that I didn’t resume meditation then, because I intellectually knew that stress is part of what contributes to disease worsening. Now I teach mantra-based meditation as part of the #WahlsProtocol. I also do #HeartMath, which is a form of #biofeedback; it’s really a form of meditation as well. My goal personally is to do both every day; occasionally I’ll miss a day.

Tell us how you incorporate your protocol in your medical practice and your research study:

My clinical style is to teach the building blocks you need to do the chemistry of life successfully.  In my medical practice, I give them #thewhys, we negotiate and they decide. If your family can’t live with what you’re proposing, it’s much harder for you to be successful. That’s why I offer a spectrum of options and depending on your health and your family’s commitment, you decide where you end up on the spectrum to start, and how rapidly you want to progress. I’d rather have everyone on the same page, and that’s the point you start from.

In the research study, however, participants need to be 100% #compliant on the full protocol. I give them two weeks to try it, before they commit to being part of the one-year clinical trial. The study is in its early stages, but we are seeing significant reductions in fatigue, as well as improvement in gait.

Talk about phase 4 of your protocol: Getting evaluated for potential food allergies, toxic load issues and more personalized nutritional needs by a practitioner of functional medicine.

If the diet doesn’t work, you need to personalize it for you. Everyone is unique. We’re an overlaying of swiss cheeses, and our holes need to line up perfectly for autoimmunity to get triggered. A functional medicine practitioner can help you identify your holes. For some people, lead poisoning might be a primary driver, or there may be a co-infection of Hep C, or a genetic vulnerability that affects your B vitamin pathways. There are infinite possibilities. The vast majority of folks will experience some level of improvement on the #WahlsProtocol, but there will be some that feel they haven’t been helped. Those people will likely need to tease out the complicated factors unique to their situation by seeing a doctor trained in functional medicine, to do an evaluation and devise a personalized protocol in order to heal.

Is this a lifetime or temporary diet?

Lifetime. If people fall off the diet, they get worse. It doesn’t matter the reason you’re doing the diet: MS, Parkinson’s, Bipolar Disorder, Diabetes, High Blood Pressure. The diet can improve all of these conditions, but you need to stay on it, for it to be effective.

It’s human nature that when you start to get better, you’re tempted to slack off. I did it, too.  I kept wanting to have treats like pecan pie with my son; it never worked out. After experiencing the consequences a number of times, I stopped being tempted.

Each person can calculate how compliant they need to be for the amount of symptoms they’re willing to live with. Different people make different choices.

Finishing thoughts?

I think diets are very artificial. The closer we can get to thinking of it as lifestyle, and graze at will within allowed food groups, the more successful people will be. What I bring to the table, to the hunter-gatherer movement, is to take the principles of what foods were available prior to agriculture, add in the science of micronutrients that the brain and mitochondria need, and help people structure a way to get those nutrients from the food we have available day to day. The Standard American Diet revs up 65 genes that drive chronic disease through inflammation. The Wahls Diet turns on 72 genes that downregulate inflammation. Our DNA isn’t the problem. It is our epigenetics – those influences, like diet, that turn our genes on or off.  We have power over our diet and therefore our disease.

Terry and her supportive family (Jackie, Zach, Zebby and Terry):

Wahls Protocol Series

For more information on the Wahls Protocol, check out my series of articles and interviews.

[shelleymarietalks]

Eczema/TSW during Covid-19 lockdown

Let's recap... In October 2019 after researching into Topical Steroid Withdrawal due to having cookie cutter symptoms I decided to bin the steroids and allow my skin to heal as naturally as possible. Although I was on 15mg Methotrexate a week (immunosuppressants) I would only use natural moisturisers such as Spa Magik Body Lotion containing natural sea minerals and aloe vera lotions. I did hit a brick wall and suffered alot nearly giving in as I felt no different and in fact worse when I didn't have the steroids to turn to. However, I stuck it out and as the weeks went by I started feeling better within myself and noticed my skin wasn't as itchy or angry as it had previously been. This brings me to February 2020 when I began to slowly reduce my Methotrexate yet again. With the itch and rawness of my skin calming down and the inflammation reducing I felt well enough to see how I would get on with just 5 tablets a week, which then got reduced again to 4 shortly after.

On Monday 23rd March 2020 the government put the UK into lockdown due to a deadly virus, coronavirus, slowly spreading around the world causing a pandemic. Workplaces were shut down and all shops other than essential supermarkets were closed. We were to remain home and sheild only to leave for food and essentials. Typical, I was due to start a new job within Early Years at a day nursery which was put on hold and I was furloughed along with the majority of the country. Although I was forced away from my loved ones and unable to do all the lovely things I did before this gave me the time and the break I needed for my skin to heal. And it did! As weeks in lockdown continued my dosages of immunos were reduced bit by bit as I'd keep intouch with my dermatologist via email and my skin was the clearest it had been in the past 5 years. I wasn't in contact with any allergens, I wasn't eating takeaways and junk food and I had no stress from work and general life as everything was out of my control. We had some amazing weather allowing me to get out in the sun and tan my now clear skin. Glowing!

It is now Monday 29th June and I am now on 1 (2.5mg) Methotrexate a week and my skin continues to clear. I am also in week 3 of my new job and despite the anxiety from the change of routine, which I do not cope well with, I am considerably surprised at how well my skin is holding up. I've had a few niggles with inflamed hair follicules and dry skin but I have noticed that I am suffering alot with my hayfever causing alot of sneezing and dry eyes, this could also be a touch of the flu so I'm trying not to stress my little sore nose over it too much because stress is one of my major triggers. With lockdown being eased, the stress I had over starting my new job and takeaways now open this could be another reason to those niggles, but I refuse to let it get me down.

As we begin to get some form of normality back and now I am in contact with allergens and things that can irritate my skin, I shall be keeping an eye on it in the hopes of identifying a trigger that can eliminated to help keep my skin under control... Oh and I forget to say that I am no longer taking Amitriptyline for my anxiety and depression caused by my condition so am extremely happy and hope that by the end of 2020 Methotrexate will be a thing of the past and I can control my skin without medication. This doesn't mean that I've cured my eczema but at least I have figured out what's right and wrong for me so that I can focus on what works well for me.

I would like to thank my family, as always for forever being by my side during the darkest of days and to the girls I've made connections with through Instagram sharing our stories and giving eachother the strength to pull through the bad days ❤

Let's hope that when I post my next blog, whenever that will be, that my skin has continued to clear and that the light still remains at the end of the tunnel!

Love & Light xxx

[stacygarringer]

The Rona

We are on day 12 of self isolation. Not because we have symptoms, but because this virus could devastate our family.

Six months ago I started a biologic. It was actually a type of chemotherapy that wasn’t successful in killing cancer, but it does kill my immune system, and ironically that’s what my body needs to be able to heal. Crazy right?! When I agreed to treatment, I knew it would increase my chances for certain cancers and infections. The numerous blood tests and doctors visits before I was even allowed to start treatment made me realize very quickly this was no joke. This was and is very serious. I was petrified of starting treatments. I still am. Yesterday, I was supposed to walk into a local hospital, sit there for 6 hours while being given an iv infusion that will completely deplete my immune system for the next two months. I couldn’t do it. My doctor was kind and honest, that these are unprecedented times, and we just don’t know enough to justify risking my life. So I stayed home. I planted seeds and gave thanks to my body for all it has done for me. To know that if I got this virus, my body would not be able to fight it is terrifying. I am one of those people you hear about in the news. I had already been on high alert as the flu or just a cut on my finger could really be bad for me. Then came the Rona(yes that’s what I call it). From the moment I heard about it I knew my family’s life was going to change.

Before they closed the schools, Arrick and I debated on pulling the kids out of school to lessen our exposure. When you have a child with special needs and they are thriving in school, it is a HUGE deal to change their routine and let’s face it, I am no ABA therapist or teacher. I am merely a chronically ill mom who struggles on the daily to do what most people take for granted. So when the school called I was both relieved and terrified. Next week we start online school and I have chosen to live in la-la land until Sunday, because stress and worry are some of the biggest triggers of my Crohns flares. We have tried to implement a schedule, but that’s easier said than done. That’s kind of how our life is, everything is harder than it should be. So when we started self isolating we knew it was gonna be next level. We have laughed, cried, and laughed some more. I have wanted to gouge out my eyes and stick them in my ears at times. But we are safe. I am safe. And I know that everyday that passes is one day closer to this being over with.

The treatment I am on takes 6 months to get out of my system. So even after life has gone back to normal for most, I will still be self isolating. After the dust settles, my doc and I will talk about when to start my treatments back up. I haven’t stepped foot in a store or restaurant for weeks. I haven’t had a mcds unsweetened iced tea in 12 days and I’m pretty sure that has been the saddest/hardest part for me about this whole thing:).

I have sat back and watched this all unfold from a much different perspective than most people have. This isn’t just an inconvenience for my family. This could be a life or death situation for us. My biggest fear as an special needs momma is to not be here for my kids as they grow up. When you know your child will need assistance for the rest of their life, it makes the possibility of dying even scarier. The amount of responsibility is immense and inexplicable to those that have never walked this path.

Starting today, Indiana has implemented a ‘stay at home’ policy. I hope it was soon enough. Please, please follow it. For me, for you, for my family, for Arrick’s Mamo who hasn’t been able to have visitors at her rehab facility in 2 weeks. For sick children, the immunosuppressed, the elderly and the everyday people who are and will be affected by this virus. I hope that maybe, just maybe, this will be a time for people to reflect on their lives. On how we are all intertwined in this crazy thing called life. That your choices have the ability to change everything. I implore you to not take it lightly and think of others in the following days and months. Be safe out there, hopefully with the people you love, in the comfort of your home. ❤️

[poorlilbeans]

Keep FightinG (pARt Sicks!) (see what i did there?)

this fic. is so long. why am i doing this. anywho this part has a whole lot of talking... WE FINALLY HAVE A DIAGNOSIS, Y’ALL. WHOOP WHOOP! but yeah there’s also some fluff in there bc i am hardcore victuuri trash sooooo... yeah i hope you have as much fun reading it as i am having writing it :)

When Victor woke up, Yuuri had still been asleep, and that was weird in itself. Normally, not only did Yuuri suffer from insomnia, but he was an incredibly light sleeper. Someone could sneeze two cities over and somehow, some way, it would wake him up. Today, however, he didn’t stir when Victor got out of the bed and fixed the covers around him, untangling the IV chord that had somehow wrapped around his blanket during the night. 

Victor needed to get out of that hospital room. He needed to be doing something other than worrying. It was 6:30 in the morning. He figured he could get about an hour of practice in before the nurses would be waking Yuuri. It was better than nothing.

Yet again, skating proved easier said than done. He was distracted, constantly wondering if Yuuri was awake yet. The English-speaking nurse probably wouldn’t be in for her shift yet, so he’d be alone, unable to understand anyone, missing Victor...

No. He wasn’t awake yet. Obviously. Victor barely stopped for breath for the entire hour, skating as hard as he could through the fog of worry that engulfed him. On the way out, around 8:00, he ran into Yurio. 

“What are you doing here?” Yuri asked, like it was completely inconceivable for a professional figure skater to be at an ice rink.

“Skating,” he answered slowly, tentatively. “I was just heading back to the hospital.” Yuri regarded him with an uncharacteristic look of unmasked concern.

“Tell Katsudon I said hi,” he whispered, pushing past Victor.

By the time he got back to the hospital, the male nurse from yesterday had roused Yuuri and appeared to be having language-barrier issues with him.

“You drink water,” the nurse was carefully saying, to a very pale and very confused Yuuri. It was a simple request, but he didn’t seem to understand, and the nurse didn’t have enough English to rephrase. Victor entered, and Yuuri immediately seemed to forget about the nurse, letting out a low whine and reaching out towards him. Taking his hand, Victor turned to the nurse and asked, in Russian,

“Is everything alright?”

“We’re a little feverish right now,” the nurse answered. “He seems to have forgotten that he can’t drink water without moving the oxygen mask, but he won’t let me touch him to move it for him.” Victor turned back to Yuuri, who was gazing at him with bright, unfocused eyes.

“Are you thirsty, love?” Victor said softly, rubbing his knuckles.

“No. Hurts to move.” That made sense. The nurse had removed the blanket and the long pajama pants to keep Yuuri from overheating any more, and it revealed that his elbows, knees, wrists and ankles were flushed red and disturbingly swollen. He lay stiffly, awkwardly, making it clear that his joints were not tolerating any movement. 

“That’s okay,” Victor whispered, doing his best to mask his concern. “I’ll do all the moving for you, alright?” Yuuri hummed, either too delirious or too sore to nod, and Victor gently removed the oxygen mask and brought the cup of water to his lips.

Yuuri managed a few sips of water before whining in protest, punctuating it with a little hiccup. Alright then, no more water. Victor put the mask back in place, hoping it would be enough incentive for the delirious man to try and avoid throwing up. Once they were settled, the nurse spoke again. 

“We got his results back from the blood lab. They didn’t find any evidence of disease, except that he’s producing auto-antibodies.”

“Which means?”

“Which means it’s safe to assume that whatever’s making him so ill is some kind of autoimmune disorder. His combination of symptoms is pretty unique, but individually, they’re all symptoms of various autoimmune disorders. So that means we don’t have a name for the disease, but we are able to start treating it.” Victor didn’t really understand, but he nodded anyway, squeezing Yuuri’s hand protectively. “For the moment, however,” the nurse continued, “we need to focus on getting that fever down.”

It took hours. Thankfully, Yuuri didn’t seem too uncomfortable, save for his inability to move without aggravating the painful inflammation in his joints. Victor climbed into bed with him again, whispering reassurances in his ear. The sensation of Victor’s breath on his neck tickled, and Yuuri giggled deliriously for several minutes. The nurse elevated his broken ankle, and covered his arms and legs in ice packs to try and bring the swelling down. Every time he added a pack, Yuuri yelped, cursing in Japanese at the cold. Victor just held him, trying not to despair at how... different he looked. How ill. He was so pale. He’d visibly lost weight, too- weight he definitely didn’t need to lose- but the Prednisone being pumped through his IV (to reduce inflammation, ironically enough) caused his face to swell up, so he somehow looked gaunt and puffy at the same time. The worst part, though, was his eyes. Normally, Victor could stare at Yuuri’s eyes for hours and not get bored. They were so expressive; they sparkled, shifted around, widened and narrowed- he could portray emotions with his eyes better than he could with any words. Now, though, they were dull and confused. Victor couldn’t bring himself to make eye contact for more than a few moments, because those weren’t Yuuri’s eyes. 

It felt like hours before his temperature began to go down, and when it did, it seemed like a miracle- until Victor looked into Yuuri’s wonderful, expressive eyes, and saw nothing but pain and fear.

“When are they going to let me go home?” he whispered. Victor almost missed the delirium; at least then, Yuuri hadn’t been quite so aware of how miserable he felt.

“I- I don’t know, my love. But they know what’s wrong now. They’re going to make you better.”

A little while later, the English-speaking nurse arrived with Yuuri’s first dose of immunosuppressants. 

“You’re going to be on both for a while,” she told him. “Once you go home you can take the Prednisone orally, and you can wean off of it slowly until you’re just on the immunosuppressants.”

“For how long?” was Yuuri’s fearful response.

“Well... forever. You’ll be on the immunosuppressants forever.” Yuuri was visibly holding back tears as he obediently swallowed the pill. The nurse offered him another inhaler, which he took wordlessly. “Since we know the source of your breathing troubles, we’re starting you on a preventative inhaler for a while. Hopefully, once the drugs start working, you won’t need it any more. I thought you could try a few minutes without being on oxygen, and see if your breathing is any better.” Yuuri just nodded, cuddling sadly into Victor’s side. “Do you understand why you’re taking these medications?” He shook his head; Victor felt silent tears soaking his T-shirt. “An autoimmune disease,” the nurse told him, “is when you have an overactive immune system. In most cases, it attacks another part of the body; the digestive system, the skin... but for you, it has attacked multiple parts. It seems to have affected your digestive system, your respiratory system, your nervous system... it’s likely your fever is a defense mechanism; your body is under the attack of your body.” Yuuri didn’t answer, so the nurse kept talking. “Chances are, you were born with the disease, but it was inactive until now. The goal is to make it inactive again with medication, but most people have the occasional flare-up after diagnosis. Usually it’s random, but environmental factors do sometimes play a role in it. Some people have flare-ups after switching to a new medication or eating a new food. Extreme stress is also known to cause flare-ups.” Then, after so much prolonged silence, Yuuri laughed. Hard.

“What’s so funny?” Victor and the nurse asked in unison.

“I am stress,” Yuuri cackled. “I am the human manifestation of stress.”

“It’s entirely possible that’s what brought it out in the first place. Were you particularly stressed out before you got sick?”

“Yeah,” he answered, still giggling. “It was right before a competition. I had panic attacks three days in a row.”

“Panic attacks? Have you been to a doctor about those?”

“Yeah, I’m on medication. The doctor here knows about it.”

“Alright. You have to be diligent about managing that. Autoimmune disorders can be tricky enough without a mental illness to set them off.” Yuuri nodded, but it was clear to Victor that he still found the irony of the situation absolutely hilarious.

Yuuri was cleared to leave two days later. He certainly wasn’t healthy; he had to be taken down to the parking lot in a wheelchair, and Victor carried him to the car, trying not to flinch at how light he had gotten. The instructions were clear and strict: Keep him on the medication. Make sure he drinks water. Don’t touch him when he has seizures, unless he’s at risk of choking. Call the doctor with any questions. Take him back for weekly checkups. If it gets out of control, call an ambulance.

They drove in silence for a while, Yuuri clutching a plastic garbage bag just in case. He’d started solid food that morning, and his stomach didn’t seem too happy about it. Eventually, at a red light, he spoke.

“I’m sorry.” Victor blinked in surprise.

“What for?”

“Just... all of this. For scaring you. For being sick. You didn’t... you... you deserve better.”

“No, don’t do that. I love you. I wish more than anything I could take the pain away from you, but I can’t, so I’m more than happy to be here for you instead.” He held up his hand, the gold engagement ring glinting in the late afternoon sun. “In sickness and in health, remember?” Yuuri’s ears tinted pink.

“I’ll never understand what god I pleased to bring you into my life.”

“Maybe,” Victor breathed, “you were wonderful all by yourself. Maybe you didn’t need to please a god to be the best thing that’s ever happened to me. Maybe even when you’re sickly and sweaty and swollen you’re still the most beautiful person I’ve ever seen. Maybe, without divine intervention, I am still more in love with you than I ever imagined was possible. Maybe we’re in love just because we’re in love. Ever think of that?” Yuuri ducked his head, grinning bashfully.

“We should really get around to getting married.”

“Maybe when you can walk again.”

AHHH this fic is already way too long but i keep having ideas >.< w h y am i like this eurgh

regardless, i hope you’re enjoying it so far :)

[chronicbadassblog-blog]

Obstacle Course of Treatment

I got my first Remicade treatment the other day. Remicade is an immunosuppressive drug used to treat Crohn’s disease and some other chronic illnesses. I get an IV (a needle in the arm) and sit in a chair for 2 hours and ponder life. It makes me tired and makes my joints hurt a bit, but it hasn’t been too bad compared to some other drugs I have been on.

When I arrived at the infusion unit the other day I felt like a weight had been lifted off of my shoulders. As I’ve stated in previous posts, moving is a way bigger deal when you have a chronic illness. And even though there is still so much stress in my life from the current political administration’s threats to my healthcare and to the healthcare of many like me, I managed to move, get insured, get a primary care provider, get a GI specialist, get my consult done at the infusion center, make sure the insurance covered the medication, make an appointment, and show up and get my medication. I had been pressing forward for so many months, that I couldn’t believe I got to the top of the hill.

At least I got a round of it. I’m scheduled at least through May for now to receive it every 8 weeks, per the schedule I had been following in Boston for the past year. I do something like praying every day that I’ll continue to be able to receive it. I’m trying really hard to have a job that pays my bills but also stay in an income bracket that enables me to be able to afford to get Remicade. I wish I didn’t have to worry about that. It’s my biggest fear in life that I will need treatment to give me a good quality of life, or keep me alive, and I won’t be able to get it.

When I focus on the big things it causes anxiety, so I’m trying to focus on the smaller things for now. My infusion happens to be at a center that primarily supplies chemotherapy to cancer patients. I’ve seen a variety of people there going through all sorts of things. It also happens to have a spectacular view of the Rocky Mountains through a nearly floor to ceiling wall of glass. It happens to be directly off of the bike trail that lets out a couple of blocks from my place. I finished my treatment the other day and, even though I was getting fatigued as I often do after I receive it, I biked the 10 minutes home. The sun had set not to long before and there was just enough light to get home. The cool breeze blew across my cheeks. I ate some good food and watched a fun movie and rested

I teared up a little bit. I had overcome the first obstacle. I feel like my training is a manifestation of the more “meta” struggle and celebration that is life. Sometimes it feels like there is no progress. Sometimes you get hurt. And sometimes...you tackle the obstacle head on and succeed. And you rejoice for a moment. And then you get yourself ready for the next obstacle.

I don’t know what’s going to happen next. But this “Badass” moniker is inspiring me to keep moving...in the smaller and more inverted sense of the word.