Go here for my blog: http://www.iwillfightwithfire.blogspot.com. I will be posting updates there in the future. It's pretty empty right now because I just made it today, but it is the best way to keep interested people informed!

My name is Katie. I did an AMA not too long ago about my insulin allergy the thread can be found here.

I'm back to answer more questions and to give some updates!

I am a type one diabetic, and I have been for what will be 15 years this December. I guess the world has a sick sense of humor, because I was diagnosed the day before Christmas. I am now 20 years old. Some more information on type one diabetes can be found here.

Up until a month ago, I was wearing an insulin pump, a small pager-sized device that gave me my medicine 24/7. It gave me a lot of freedom, but it also left me with sites (the places where it connects to my body) that looked like this: possibly NSFW.

About a month ago, I started seeing a new doctor, and I had some blood tests run. My suspicions were confirmed. I am ALLERGIC to the only bunch of medications that can keep me alive. Here are the test results: results.

The number on the left (24) reflects my current level of antibodies. The number on the right (<.4) is what that number should be. In essence, my body is killing/rejecting my medication once it is injected into me. As a result, my body has been taking some damage.

Currently, I am using insulin pens instead of a pump. Instead of having one giant sore place, I now deal with hundreds of them all over my body. Pictures are found in this album (although the pictures do not do the pain and swelling justice): album.

So, here I am! My body is rejecting my medication, and my doctor is currently fighting hell and high water to find something that will keep me alive before my body gets the better of me. Time seems to be running out.

Ask me anything!

EDIT: changed links to imgur.

Comments: 1061 • Responses: 74  • Date: 

four4four784 karma

Do you have any alternatives? Or are you just boned?

iwillfightwithfire1136 karma

After some pretty extensive tests, it seems that I am allergic to all insulin (be it human, pork, bovine, etc). So, right now, it's a matter of trying to get human insulin to slip past my body's immune system. Of course, that's easier said than done.

The way my doctor described it is that we need to give my insulin an invisibility cloak. It needs to get into my body and do its job before my body can recognize and kill it.

Until we can get insulin to do this, I am left injecting what I can in massive doses. Thankfully, my doctor works for a multi-billion dollar research center, so he has some freedom re: things that we can try.

I'm currently testing out an off-label drug used to treat type two diabetes. It's helping lower the insulin that my body needs so that it's easier for me to have an affect on my blood sugar.

Sorry if this is confusing.

Leporad70 karma

How does your body "kill" a molecule like insulin?

iwillfightwithfire160 karma

Insulin is peptide hormone, and therefore it is very easily destructible by heat. Here is a wikipedia page that is far better at explaining the nitty-gritty than I am: wiki.

Here are also a few studies that explain a bit more in-depth about how injectable insulin is easily destroyed both in and outside of the body: study 1 and study 2.

PretendPhD49 karma

So this is going to sound kind of weird, and the procedure is technically illegal to be prescribed by doctors in the US, but uhh, hookworms. A parasite. Take a listen to this if you're interested and at the end of the road, ready to try anything.


I'm allergic to almost everything ever, but nothing my body produces naturally, I almost gave it a shot but found a way to sort of manage it before I really pulled the trigger. It kind of sounds like it might be the way to go for you though. Good luck with whatever though.

iwillfightwithfire17 karma

Sorry I didn't see this earlier! I am digging through the thread and trying to answer people who I may have missed :)

This sounds interesting! I have seen some pretty interesting stuff online after a quick search, so I am going to dig deeper!

coveritwithgas447 karma

I don't have any specific concerns, but in general, you should redact the hell out of any healthcare-related documents before posting them online, even/especially your own.

iwillfightwithfire352 karma

Ah, thank you for the tip. I didn't even think about that. I'll make a quick edit and re-post the link. Thank you again. :)

Also, happy cake day!

Pudmeister358 karma


iwillfightwithfire253 karma

Wow, thank you so much! I will DEFINITELY look into this.

I feel like everytime I talk to someone about this, I learn something new. It's amazing.

I am sending your daughter lots of happy thoughts, and I hope she is doing very well! I know little about Hashimoto's, but I know that autoimmune disorders are tough.

baimoli19 karma

You seem like a real nice lady. :)

iwillfightwithfire14 karma

Thank you very much :)

Brit134194 karma

Maybe not a question you were expecting but, do you ever feel anger towards average, every day people simply because of how much easier they have it, even if in a passive-aggressive way? Sorry if this is an invasive or insensitive question. Sending thoughts and love your way :)

iwillfightwithfire357 karma

No worries about being invasive or anything! :)

Hmm. I don't feel anger so much as irritation. On my bad days, I sometimes get really irritated/upset because people just get to EAT. They don't have to count things or worry about where they are going to give a shot. They don't look at a plate of food and see numbers. They don't have to deal with pain for hours after a quick injection. It sucks. I can't say I've ever actively confronted anyone in anger. I have vented to some of my friends, and most of them didn't even realize that it was something that I noticed.

On my good days, I feel a quiet resignation.

Samonuh24 karma

My girlfriend has Type I. I swear, I have so much respect for what you have to do. Not being able to go a few hours or eat even the smallest amount of food without checking your levels seems hellish to me.

iwillfightwithfire17 karma

Thank you! I hope your girlfriend is doing very well :)

ButtsexEurope97 karma

Have you thought about just replacing it? I mean, you gotta get a new body SOMETIME. It's becoming more expensive to maintain it than just buying a new one.

iwillfightwithfire137 karma

I had a dream that I did this. I got to craft my new body, and that was pretty badass. I woke up really confused, and it took me almost five minutes of staring into my bathroom mirror at my just-woke-up self before I realized that I was awake and not the beautiful heroine I'd drafted a few minutes/hours prior.

ArminscopyofSwank54 karma

You are a very strong woman.

One question: Your doctor seems to be just the person you need to champion your cause. How open is your doctor with regards to your prognosis?

Has there been documented cases of other people in your position?

iwillfightwithfire91 karma

Thank you so much. I really appreciate your kind words.

He is amazing. I found him in a fit of desperation. I was calling doctor after doctor, looking for someone who might know something. I found the research center, and they told me that if something wasn't on the market to help me that they would make it for me. I have never felt such a huge sense of relief in my life.

My doctor thinks that we can fix this. I have not asked him for a prognosis specifically, mostly because I don't want to feel like I'm on a count-down. I have pretty severe anxiety that I'm medicated for, and it's a good idea for me to throw all of my energy into finding something that will fix this instead, if that makes any sense.

There are a few cases that are somewhat similar to mine, but nothing that is well-documented. Here are a few of them that I know of off the top of my head (i.e. my google bookmarks): case 1, case 2, case 3, case 4, and case 5.

ArminscopyofSwank33 karma

Thank you for your response. Very informative.

I was sick, but now I'm better. I kicked its ass. You can do the same.

Next AMA tell us how you beat it.

iwillfightwithfire53 karma

Thank you for asking questions. There is a special kind of catharsis involved in AMAs.

I will definitely keep reddit updated on my status as I move forward, if that's something ya'll are interested in.

atypicalfractures46 karma


iwillfightwithfire90 karma

It is something that my doctor and I have considered.

The issue is that it is a delicate balance. My immune system is already a little out of whack because diabetes is an auto-immune disorder. It is attacking me, but it has trouble attacking threats that are not recognized. For instance, I get colds/bronchitis/etc. all the time, because my body simply cannot fight them off. However, it can rage against insulin because it is something that is familiar and that it has been attacking since I was five.

Suppressing my immune system is dangerous because I am a college student living in close proximity to thousands of people. It is one of our last resort options as of now.

MaxMouseOCX6 karma

As an absolute worst case scenario, would destroying your immune system and having a bone marrow transplant help the situation?

iwillfightwithfire2 karma

I'm not entirely sure. However, it is something that I am willing to do if need be.

atypicalfractures5 karma

If it is as bad as you say it is it sounds like your are sort of at the last effort stage... last ditch effort would really be a bone marrow replacement which would cure you but has a high morbidity and mortality. You should be open to trying a corticosteroid to reduce your immune response. It is possible that if you can calm down the response that you could cycle on prednisone during flares. Infections will typically spike anyone's glucose, but if you get infected but your body isn't killing off insulin you'll be able to treat it. Not a doctor, but I think this is a path you should openly consider. It will likely make you gain weight and such but its a trade off.

iwillfightwithfire7 karma

Definitely. Thank you for this! I am definitely taking notes, and I am bringing a bunch of things up with my doctor.

Right now, we are thinking about mixing a pretty strong steroid with my insulin to see if that helps at all. The Bydureon that I started taking 2 weeks ago has already made some impact in my insulin needs, so we are thinking that if we can just find the right "fuse," so to speak, that my body needs to turn off, we might be able to turn the power back on. If we're following that metaphor.

atypicalfractures1 karma

How long after you inject do you get the redness and swelling? Immediately? A few days later?

iwillfightwithfire9 karma

The pain starts during the injection. As soon as insulin comes into contact with my subcutaneous tissue, it burns. It feels like someone is pressing a curling iron against the underside of my skin. 20-30 minutes later, there is a visible red circle surrounding the injection point. 1-2 hours later, there is deeper swelling, generally expanding from the injection site and tapering off in to the surrounding tissue. 5 hours+ there is a tender lump under my skin that is swollen enough to be seen under leggings or jeans and that is hot to the touch. About a day later, the symptoms at that particular site dissipate. Bruises are left afterward like battle scars.

Of course, I have to give more than one shot, so this is happening at several points on my body at any given time.

klimr28 karma

As a type 1er myself, I can only begin to imagine how awful having your allergy would be! Hang in there! Several years ago I was having some substantial problems with my sugars. My insulin ratios were incredibly inconsistent which caused my sugars to be all over the place. I decided to try and combat this by changing my diet and exercising a lot. I currently try and stick to the paleo diet and and do a good amount of cardio on a daily basis. After committing to this lifestyle change the amount of insulin I have to take has gone from 5-6 shots a day down to 2 shots a day. Sometimes my long acting insulin will actually carry me through the entire day. I have found hot yoga to be particularly effective at keeping my sugars down. Unfortunately, we have no bearing over medical advances and treatments (at least I don't) but we do have the ability to make our lifestyle as efficient as possible given our circumstances. These simple changes really really helped me out...I thought I should at least share, maybe they could help you out too.

iwillfightwithfire15 karma

Thank you! Congratulations, by the way! Your story is extraordinary, and I'm so glad that you found something that works for you. It's good to hear people who are on the flip side of this disease.

I will definitely check out some of your suggestions :)

klimr9 karma

You are welcome. Less insulin needed=less allergic reaction. Best of luck Katie! Keep us updated.

iwillfightwithfire5 karma

Will do! :)

flyingfalcon1213 karma

What keeps you going? I can't imagine what the situation you're in Right now Is like, but what keeps you from giving up all hope?

iwillfightwithfire135 karma

There are so many television shows that I haven't seen yet. There are so many books that I haven't had the time to smell on dusty library shelves. There are so many comfy blankets that I still want to blanket burrito in. There are so many dogs left to pet and cats that I want to beg for attention. There are still crazy stories that me and my mom need to share. There are moments that I want to capture with my dad before his Alzheimers takes him away from my family. There are a lot of dishes to do, but there are also a lot of songs that I can sing along with while I'm up to my elbows in soap. There are yoga poses to master and a million different kinds of tea that I haven't tasted yet.

There are so many things left to do, and those things keep me going.

annamai2250 karma

I just want to let you know that I am a person that has struggled very much in this past year with suicidal thoughts, and I have looked in many places for answers on what is worth living for. Many people would tell you it for huge things, big places, big events...college, marriage, etc. What you wrote was inspiring to me. Simple joys of warm blankets...the essential joys of experience and loved ones. Those thoughts are truly beautiful to me, and I just wanted you to know that.

Stay strong and optimistic! You deserve all of those things and more!

iwillfightwithfire35 karma

Wow, thank you. This gave me goosebumps.

I have dealt with depression and bipolar disorder for a few years now, on top of my diabetes and perhaps as a side-effect. I know it's hard, and things suck a lot, but you're gonna pull through. There are people out there to smile and laugh with you, and I'm one of them.

Feel free to DM me anytime you want someone to talk to/rant to.

flyingfalcon128 karma

That makes me want tov live my life so much more fully. Incredible. Also, yess old book smell.

iwillfightwithfire9 karma

I'm glad :)

There are so many things to do, and so many of them are good.

Nimnix9 karma

Best of luck to you Katie. My little sister's type 1 broke loose when she was 6 years old and had it for three years now, so I know what a disaster type 1 is and I can barely imagine how it is when your body doesn't want the insulin. My parents and my sister regularly has to hear that she "should've been healthier" because of the global ignorance in diabetes where practically everyone mix up type 1 and type 2. I know there's a medicine that prevents your body from attacking new body parts such as a transplanted kidney. Maybe that could prevent the body from attacking the insulin too? Just a thought.

iwillfightwithfire8 karma

I wish I could hug your little sister. I have been bombarded with stuff like that since I was first diagnosed, and it can be hard to sit through. She is a trooper. I wish her all the best, and I know she'll grow up a strong young lady.

This is something that I was just introduced to in this thread, actually! I am looking into it. Thank you for the recommendation!

zipcode4117 karma


iwillfightwithfire16 karma

You guys are so strong. I wish I could hug all of the people with invisible illnesses and give them a high-five.

Hmm, good question.

I write a lot. I like to write different situations that I can use as a kind of escape, I suppose. I used to read a lot more than I do now, but now I really only enjoy a particular niche of fiction. I am hovering somewhere in between young adult and "adult" fiction where one feels trite and the other feels too dry.

I guess you could say that I create places for me to exist where I don't have to worry about these things.

When I "grow up," I'd like to write TV shows. I have a few series that I'm working on right now.

FriendlyRelic7 karma

If you ever can't think of anything to write about, check out /r/writingprompts. They have a few good prompts every once in a while!

iwillfightwithfire2 karma

Thank you! This is awesome!

iwillfightwithfire2 karma

Thank you for the link! I'm always looking for more inspiration :)

nojailtime7 karma

That's such bad luck. Hope things get better. How do you cope with such negativity and stay positive?

iwillfightwithfire12 karma

During the day, negativity is relatively easy to keep at bay, because I am jumping from one event to another. Eat breakfast, go to class #1, eat lunch, go to class #2, do French homework, etc. Step by step, daytime goes by.

Nights are harder to fend off. I reach out to my support network when it gets to be too much. If I need to, I cry. If I need to, I punch pillows or scream into blankets to get it out. I've ripped up a phone book before, because I felt the need to take back control of destruction. The funny thing about negativity is that it is reactionary, in my case. I roll with the punches and do what I have to do to try and stay one step ahead.

Brakden7 karma

So, what does an average day look like for you right now? And are you doing things differently (other than the medication and everything) than before you found out about whole thing?

iwillfightwithfire9 karma

An average day for me is pretty packed. I am taking 14 units at a pretty large university, consisting of a film class, an english class, and introductory French. I am part of a PhD program that sets me on the fast-track toward graduate school, and that takes up some of my time. I am also working on research alongside several faculty members in my major departments. On top of all that, I do homework, eat meals, and try to be social with friends.

I tend to plan my meals carefully now. I make sure that I am going to be somewhere where I can get low-carb food that I don't have to give super doses of insulin to consume. I also carry a ton of insulin and emergency supplies on me, more so than I have done in the past. I have started to pet more dogs, because I figured that I deserve little doses of happiness whenever I can get 'em these days, although I don't know if that counts as part of your question ;)

Brakden3 karma

Thanks on answering! Do you ever feel like just dropping everything?

iwillfightwithfire3 karma

Oh, definitely. Sometimes I indulge that feeling and lay in bed all day with diet sprite and Reddit. This doesn't happen all the time, but it does happen. I would be a liar if I said that I didn't quit and then pick myself back up 24 hours later.

Thankfully, when this happens, I have friends who come over and sit in silence with me if I want. We play Cards Against Humanity. We watch shitty horror movies and laugh over things that were funny at the time and aren't anymore.

Dropping everything happens, but so does picking it all back up.

deadkandy7 karma

Did you find the insulin pump to get in the way of certain things? (Ie:sports)

My partner refuses to get one and stays with the pens, because of the pump getting in the way

iwillfightwithfire4 karma

There were definitely moments when the pump got in the way and where I would get frustrated with it. However, the pros way outweighed the cons in my case (at least, before the huge reactions began to hinder me).

I don't have an SO, so intimacy isn't something I worry about. I am also not a huge contact sports player. I prefer things like hiking, yoga, and things of that nature.

ameatball6 karma


iwillfightwithfire6 karma

This is so cool! I'll send a message your way.

AzureMagelet5 karma

I'm super late to the party as usual, but I really hope you are a le to answer this. I'm a preschool teacher and next year I will have twin boys in my class, 1 has diabetes. Unfortunately I'm not sure which type of diabetes, but I know he has a pump. I will be responsible for helping him with his pump and ensuring it is at a safe level. Needless to say I'm super nervous considering I feel like I have this kids life in my hands. I will go through training and have the information written down but still.

Since it sounds like you were about preschool age when this effected you, what were things your teacher did or could have done to make you feel like a normal kid. I will obviously talk to the parents but how would you want the teacher to handle your difference for the other children. They'll obviously see me testing him and what not, so it won't be a secret but I don't want to make him feel uncomfortable.

iwillfightwithfire8 karma

I am still here answering questions, so no worries about the question.

First of all, you are an amazing teacher for asking a question like this. I wish that my teacher would have been more communicative with my parents. I had a teacher who refused to let me have snack with other children, because she was afraid that my blood sugar would get messed up. I wish she would have talked to my mom and been open with my family about wanting to help.

Making the child comfortable makes a world of difference. My biggest recommendation would be to try and make testing/bolusing a normal part of his life. Some children have to wash their hands before they eat, and this child needs to give insulin and test. It's a part of a routine.

Again, you are amazing.

AzureMagelet2 karma

Thanks. I wish I could say things are different now and all teachers/schools would be like this, but amazingly enough they had a hard time finding a school that would work with them. Most said mom/dad would have to come do the pump for him and they work so that just isn't possible. We had another boy a few years ago with diabetes and his family recommended us to this family which is honestly such an honor.

Do you know of any children's books that would be appropriate for preschool to help the children understand? Would vegetables be better than fruits since they have less sugars for snacks? I definitely want him to be able to eat with the group.

iwillfightwithfire3 karma

Here are some of my favorite books that deal with children who have diabetes/work for that age group: #1, #2, and #3.

In terms of snacks, I recommend talking to the parents either via phone, email, or in person. Each child is different, and their dietary needs are very personalized.

sharkbait765 karma

If you got a pancreas transplant would you be allergic to the insulin it naturally produces? Sorry if that's a stupid question. Stay strong and keep fighting.

iwillfightwithfire10 karma

To be honest, I haven't considered this as an option quite yet. The only way that they will give me a new pancreas is if my kidneys are failing subsequently. It's a bit of an ominous process.

However, just based on my knowledge of the human immune system, I would say that there would likely be more of a problem in that instance. Because, not only is insulin being produced (something that my body hates anyway), but it is also "foreign" insulin that is not as neutral as insulin produced for sale on the market. Instead, it is insulin from a genetically unique pancreas. However, I am not a doctor, so that is just my best deduction.

Don't worry about asking questions. I like answering them, and I think this question was a great one. Thank you!

humanpeepul5 karma

Is there any way of modulating your dietary intake and controlling it? I know it'll be very minimal, but would it help?

iwillfightwithfire8 karma

I am definitely trying to do this. :)

I generally eat pretty low carb to try and limit the amount of insulin I need to take. But, I am a 20 year old collegiate human. Today I had pizza, and I enjoyed it despite the pain that the injection(s) caused.

I try my best.

humanpeepul3 karma

More strength to you love. I hope the R&D labs churn out something viable for you soon xx

iwillfightwithfire6 karma

Thank you :) I appreciate it.

fingertoes594 karma

As a type 1 diabetic this is some scary shit. Hang in there sista!

iwillfightwithfire4 karma

Thank you so much!

Chob_Nombie4 karma

Can they put you on an immunosuppressant?

iwillfightwithfire6 karma

They can, but it puts me in a pretty bad place.

I am a college student living in a college town where thousands of people are sick at any given time. By suppressing my immune system, I become susceptible to some pretty terrible things. It's a balancing act that me and my doctor are trying to figure out.

It's something that we've considered, and it's sort of our last resort.

Cysioland3 karma

I was on immune suppression medicine. It was shit. Total shit.

iwillfightwithfire4 karma

Ugh, I'm sorry you had to go through that. I can only imagine how terrible that must have been. I'm happy that you're here, and I hope you are feeling at least somewhat better. :)

Magmatron3 karma

I don't know if it will work in your case, but look into xolair, it is a newer shot i have been getting that basically makes the white blood cells not fight allergens and actually fight disease, it will obviously need a doctor perscription though

iwillfightwithfire3 karma

I will look it up and bring it up with my doctor! Thank you for the info! :)

ElizaberryLoL3 karma

Thanks for taking the time to share your situation with the community. I'd like to apologize in advance for some of the negative comments that are undoubtedly going to find their way into this thread. I don't really have a question, but I'd like you to know that I've got my fingers crossed your doctor finds something that will work!

iwillfightwithfire9 karma

Of course. After scouring different online communities and seeing how some people are suffering in silence from different adverse reactions to insulin, I think it is important to make some noise. I have access to a great research facility, so I think I am in a pretty good position to stir the water a little bit.

I like to confront negativity with knowledge and information, but I am also expecting that it will happen just because people feel impersonal through a computer screen. I try to give people the benefit of the doubt.

Thank you :)

isitme_or_isityou3 karma

Hi Katie I must say you are a courageous woman... And your outlook towards life is simply mind blowing from the replies you've made on this post!!! I understand you've done extensive research on your options...but, in case you didn't come across Ayurveda ( http://m.gulfnews.com/life/health/ayurveda-approach-towards-diabetes-1.1217613) I would say give it shot.... I recently heard about the use of a vine-like herb which managed to reduce diabetic levels for many people in under a week... And I'm looking forward to see you do your next AMA to tell how you overcame your body's limits.... Lots of prayers and wishes!

iwillfightwithfire3 karma

Thank you so much!

You all are so kind and supportive.

randomlypostin3 karma

Keep on fighting!! Kick diabete's (spelling?) ass! Science has come a long way and your cure is sure to be found :)

iwillfightwithfire9 karma

Diabetes's ass, I believe. Don't quote me on that ;)

Thank you for your positivity!

maxbaroi2 karma

Strunk and White would agree with you

iwillfightwithfire3 karma

Ah, yes. The Elements of Style.

ramily172 karma

My sister is type one and has been using a pump for years and has never once ran into an issue were her sites started to swell. Was the swelling caused by your pump due to your allergic reaction to insulin?

iwillfightwithfire5 karma

Yep! At first I thought it might be the adhesive, but I found out that it was the insulin after I put in a site (adhesive and all) and left it connected without any insulin. No reaction whatsoever.

The minute I started pushing insulin through the site, I began to swell like a balloon.

RedBullTaco2 karma

What if any alternatives are there for you? How common is your situation amongst diabetics? Also, sending good thoughts your way.

iwillfightwithfire5 karma

Alternatives are slim. I have to have some form of insulin, and I react the least to human insulin. Human insulin is what caused the swelling and grossness in those pictures, so you can imagine what non-human insulin looked like. It was not pretty.

I am trying out a medication called Bydureon that helps lower the amount of insulin my body needs, but it can only do so much. Right now, I am going through insulin like it's water, just trying to get my body to react to something. Of course, this makes eating anything a huge hassle. It's a balancing act on a tightrope with acid on the bottom to catch me if I fall.

Also, thank you for the positive thoughts. I appreciate it.

iwillfightwithfire4 karma

I just realized I totally forgot to answer part of your question. I am so sorry. My brain is getting ahead of me tonight, it seems.

From what I've been able to tell from my research on the internet and my doctor's connections around the world, this is very rare. He said that only one of the hundreds of doctors that he consulted with on his trips (he goes on funded research ventures almost every week) has seen something like this.

Floowey2 karma

What's your point of view on why our body can be that stupid?

iwillfightwithfire5 karma

Bodies do some things incredibly efficiently, but when they fuck up, they fuck up big time.

messedupmayhem2 karma

I wish I had even half the courage you do. Mad respect, /r/iwillfightwithfire

I'm not too familiar with insulin or diabetes so I don't really have a lot of questions. I wish we could go bike riding or just something fun

iwillfightwithfire2 karma

Thank you so much. :)

ununiform2 karma

I hope you find a solution.

I'm curious to know what your diet is like day to day. What was it prior to you initial diagnosis? What was it after your diagnosis and has it changed with the discovery of the insulin allergy?

iwillfightwithfire2 karma

Prior to my initial diagnosis, I ate like a typical kid. My parents were very insistent that I eat well, thankfully, so my weight etc. was very normal when I was admitted to the hospital for a crash course on diabetes.

After my diagnosis, I began to be more calculated about what I ate. I realized that carbs are different depending on what you're eating. An apple's carbs are different than the carbs found in an 8oz class of apple juice. So, it was a matter of eating what I wanted while still finding balance for injections, etc.

Now that this allergy has sprung up, I am eating as low carb as possible, which is less than satisfying. I am trying to take as little insulin as possible.

Riggs1092 karma

I'm also a type one diabetic (10 years), and I have to say, being a diabetic is hard enough already. I don't know what I'd do if I was also allergic to the medication I have to take.

If your body rejects insulin do you primarily eat a low carb diet?

Hopefully they are able to find something that works for you!

iwillfightwithfire2 karma

Hello there!

Thank you :) I hope they find something, as well. In the meantime, I am taking it an hour at a time.

2Hawt2Trawt692 karma

Get some life insurance on yourself as soon as you can. With the insulin, the older you get the harder it will be to get life insurance.

iwillfightwithfire2 karma

Good idea. I'll do some research into that.

troubleseeker2 karma

You seem to me to be a very strong woman. Lots of love and good wishes for you from the Indian subcontinent. Stay strong!

How is your family dealing with it?

iwillfightwithfire7 karma

Thank you!

My mother and father are so supportive. My mom and I are very close, and we are leaning on each other.

My doctor says that, if we can find something in time, my body can heal the damage. So, we're both just doing what we can to keep from getting antsy while still keeping pressure on doctors who may not understand the gravity of the situation.

I could not ask for a better support system made up of family, friends, and a few loving animals.

Eddy_Sc2 karma

Pets are great moral support, aren't they? I've had depression in the past (and still show signs of it) and my dog was and at times still is the one thing that keeps me up. Sometimes even my mother can't change how I feel, but I just can't look at my dog's face and not laugh or at least smile.

iwillfightwithfire4 karma

I try to pet at least one dog a day. It sounds stupid, but I'll come back to the apartment and gush to my roommate about how I saw a dog that day.

ABLA71 karma

So does your body reject/destroy all the insulin before it can do its job, or just most of it? Would that mean you require even more of the medicine you're allergic too?

iwillfightwithfire6 karma

Good question!

From what we can tell based on the fact that my blood sugars are still somewhat okay (300mg/dl+) and not off the charts high all the time, it seems that my body is accepting/getting SOME of the medicine. Our best idea of what's happening is that my body is sending histamines to the areas where I get my shots. That histamine/heat breaks up the insulin protein and then my heavy-duty autoimmune system gets involved as what's left tries to get to my blood stream.

I am requiring insane doses of insulin. I'm going through it like it's water. Doing this makes it worse sometimes, too, because I am pushing so much through one injection site that the swelling, burning, etc. becomes 100x worse.

ABLA71 karma

Wow that's terrible, I hope they find something that works for you.

iwillfightwithfire3 karma

Thank you :)

klairedee1 karma

Type 1 here, how much insulin were you/are you taking a day?

iwillfightwithfire4 karma

My current levemir dose is 150 u at night.

My I:C ratio is 2 units per 1 carb.

My TDD really varies depending on my stress levels/exercise/etc. because everything affects me tenfold. But, you can imagine how large it is judging by my ratios alone.

donthurtthisguy1 karma

If all else fails, couldn't they kill your immune system? It would suck to live in a bubble, but it beats dying.

iwillfightwithfire2 karma

To be honest, I'm not exactly sure. I don't want to lie to you, so I am going to go with "I don't know" on this one.

I think it is definitely possible, and I would take it as an option over dying, for sure. :)

donthurtthisguy1 karma

If you decide to ask your doctor, would you mind messaging me his response? I'd be curious to know.

iwillfightwithfire3 karma

I will do that!

I am actually planning on sending him an email either tomorrow or the day after (my homework is piling up, so I have to get on that). I will forward you (via copy and paste) his response.

donthurtthisguy1 karma

Thanks! I really appreciate that.

iwillfightwithfire3 karma

No problem! :)

ChaosMotor1 karma

Not trying to be a dick but couldn't you reduce or eliminate your need for insulin through diet & exercise?

iwillfightwithfire4 karma

You're not being a dick, I promise.

I can't eliminate the need for insulin through d&e, in my case, but I can reduce it.

I try my best to get at least 30 minutes of exercise per day. I am going to college on a pretty bike-oriented/large campus, so exercise is a pretty consistent thing for me. I have class 5/7 days a week. It is tricky though, because too much sends my blood sugar into the ground and I have to eat something to treat it. 99% of the time that food requires me to give an insulin injection because I am so sensitive to carbohydrates that raise my blood sugar. It, more often than not, ends up looking like a rollercoaster.

Diet, however, is a little easier. I try to eat low carb, and I eat as well as can be expected given that I am a college student who is living off of loan checks in between college payment periods.

ChaosMotor2 karma

Fair enough, thanks for your reply, I hope you can figure out something healthy & sustainable that works for you to have a good life! :)

iwillfightwithfire4 karma

Thank you! :)

sockalicious1 karma

iwillfightwithfire2 karma

My doctor was hesitant to do this, because I was in the hospital with an IV drip of insulin a few weeks before I saw him; my lips were swelling, my body was numb, and I was having some trouble breathing. My arm was swollen where the IV went in. They ran some saline through, and we figured out that it was only happening when insulin was running through.

My doctor didn't want to play around with anaphylaxis, but again, this is one of the things that we have in our last-ditch effort arsenal.

Cashenbruh1 karma

Before I ask a question I'll state that I'm someone with no proper knowledge of medical things other than what family members have gone through.

I was just wondering whether anti-rejection pills (yeah simple as hell terms) would work the same way they stop your antibodies from rejecting a transplanted organ?

I wish you and your doctor's luck!

iwillfightwithfire2 karma

You know, I'm not exactly sure! That's a good question. I can ask my doctor and find out. If I get an answer, I will send it your way to quell both of our curiosities.


Sagemaster_41 karma

I don't know if this has been asked yet, but has your doctor tried immunosuppressants to you know suppress your immune system and let you take insulin? The only problem I see with it is that you would get sick a lot...

iwillfightwithfire2 karma

I answered this in a previous comment, but I don't mind answering it again :)

We have considered it, but my doctor considers it too big of a risk at the moment, considering that I am living in close proximity to college students who tend to get sick quite a bit.

Sagemaster_41 karma

Ahh okay I see, well good luck! I hope that only the best happens for you! :D

iwillfightwithfire2 karma

Thank you very much! :)

nanonanopico1 karma

What do you think of this?


This is a pop summary, but its a conclusion reached by a number of researchers: low-carb diets might be beneficial.

iwillfightwithfire3 karma

It's definitely something that I'm trying to incorporate into my life. It makes a lot of sense to me, given that insulin is the thing that I am allergic to, so less of it would be beneficial.

Thank you for the link! :)

nanonanopico0 karma

No problem. I'm skeptical of those "try paleo/primal/whateverrichwhitepeoplethinkishealthynow" diets, but I've heard enough research suggesting the efficacy of low or zero carb diets for type 1 diabetes (and have met a couple of people who swear by it), that I thought I'd post it.

Best of luck fighting this, though!

iwillfightwithfire2 karma

Thank you so much :)

ivanparas-1 karma

PLEASE go watch Forks Over Knives (it's on Netflix). That documentary could save your life.

iwillfightwithfire2 karma

Thanks for the recommendation! :)

redditisbeingabitch1-4 karma

Are you /u/femsexaddict?

iwillfightwithfire6 karma

I am not!

sleepyshouse-17 karma

Commit suicide and teach your body who's boss.

iwillfightwithfire4 karma

'Tis but a flesh wound!