About Me

Howdy,
March-April 2012:

So. I'm your normal 21 year old girl. And by normal I mean completely the opposite. 

I: 

love dancing
am going to college for a degree in Computer Engineering
love photography
am a rather sickly individual in general. 

So why the allergen free blog thing?
Here is my story.
I've never liked milk, and in high school I seemed to develop lactose intolerance, then
the real problems started a few years ago, in April of 2010, my second semester of college, freshman year. Most of what I was eating started making me sick and I would feel terrible all the time. As time went on, I got more sick, and started feeling worse.

 Last September 2011, I had some tests done and was diagnosed with Ulcerative Protitis or Crohn's Disease. The gene test for Crohn's came back inconclusive so the doc was like "I dunno which one it is."

I was put on medication which didn't help my symptoms and started making my neck swell so much that I was also put on antibiotics to contain that. The doctor I was seeing didn't really think the first medicine was at fault (right....because my neck randomly swelling and that being a side effect had nothing to do with it). But what can you do? You sign your life over to someone and hope they didn't just get their job for the money.

I continued that treatment until January 2012 when I stopped both medications. It wasn't worth having to take both and nothing getting any better.

In March 2012, my mom made me go to a nutritionalist. He took a small amount of my blood and we looked at my cells on a computer screen (so awesome!). It showed that I had white blood cells reacting to some kind of allergy, and a bunch of unhealthy red blood cells that were all sucked in and unhappy.


The bigger cells are my white blood cells. As you can see from the one at the top, it's fighting all the allergies. All the red blood cells should be about the same size and shape, and most are in this picture because I uploaded the best looking one. But a lot were sucked in or crushed, and that's bad. I also had way too many platelets in my blood that showed up in later pictures.


Soooo, I was put on a very restricted diet (for supposedly only a month, then we will reintroduce stuff). I cannot have gluten, dairy, soy, corn, chocolate, refined sugars, black pepper, caffeine, oranges, peanuts, butter, and salt to put it concisely.

 I also have a medical food shake twice a day with the following: 

1 scoop Metagenics UltraInflamX (best in pineapple banana, bought these on amazon)
1 scoop Metagenics Ultra Clear Plus (best in berry)
1/4 cup aloe vera (this was great for my dry skin!!)
2 tsp organic flax oil (I know you can get this at HEB and GNC and lots of other unique places)
a handful of frozen fruit
water to the top of the mix

and once a day add to the shake: 
1 zinc pill (this helps your appetite, aka, to be able to eat the horrible healthy food you now have to eat)
1 super B complex




Here are the exact rules I got for foods to eat/not eat: 



So let's face it. I'm in college. I have no consistent schedule, some days I wake up at 7am, some days I wake up at 2pm. I ate easy mac and cereal and pasta for every other meal. I also have a huge sweet tooth, so I had a cookie or some chocolate (oh those cadbury eggs...) after every meal (and i mean every meal, even breakfast).

I've never been the cooking type, it doesn't come naturally, and I can't just put something together, or substitute stuff in a recipe, or sometimes even follow it precisely and get the stupid thing right. 

So all of the sudden I'm left to eating like....nuts and fruits or stuff I have to cook.

I'm making this blog because no one else cares if I spend hours baking something and fail, if i have to go to 5 different stores three times in the course of one weekend because I can't find stuff or keep forgetting to buy stuff I've never had to think about before, if I'm rapidly running out of money because "healthy" stuff is 5 times more expensive than "normal" food, if I can't rely on eating on campus anymore, or any of this other crap. 

I don't know how long this diet will last, but all I know is three weeks is already enough for me to need some sort of literary outlet. So this blog might die in a week, or a month, or never. But one thing I've already learned is that other people's experiences and sharing has helped me so much. Among those, these have been my go-to's for shopping lists, recipes, and general information: 


My sister actually bought me the SS and GF Cookbook, which led me to the above listed website. It's very helpful, but I have yet to try any recipes from the book. And the "Gluten Free Mom" actually emailed me after I left a comment on her blog. She is an angel of a lady.

So this blog is my sad attempt at living like this. Hopefully it might give others a heads up before they make the same mistakes I have. 

Cheers, 
Brittany

Contact: brittanyblack@gmail.com



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UPDATE 4/16/2012:


I have now been on this diet for 33 days. We decided to take a new direction than originally planned. I will continue this diet until I get allergy tested in late May / early June. And by allergy tested, I mean the LRA by ELISA ACT Test. See the excerpt below about allergy testing: 


--------------------------------------------------------

RAST (IgE) (skin pricking) only  detects immediate allergic reactions to about  100  dietary  or environmental substances. This test is useful to assess hives, wheezing, or shock that may appear minutes after being exposed to a reacting food or chemical.

The LRA by ELISA/ACT are comprehensive and reliable tests able to identify the causes of delayed allergy/hypersensitivity reactions. These can occur from hours to weeks after exposure. This LRA can evaluate all three delayed hypersensitivity pathways,  including  Reactive  Antibody,  Immune  Complex,  and  Cell  Mediated.  Because  the  LRA  by  ELISA/ACT  is functional, it allows EAB to screen out protective antibodies and identify only those reactive and symptom-provoking responses to items tested. Most people do not realize they are reacting to these substances since the onset of symptoms does not occur quickly.

-------------------------------------------------------
After that, it will be easier to know what I can eat without worrying. The bad thing is, these tests are very expensive. like $315+ expensive. But honestly, so were the doctor visits, procedures, prescriptions, nutritionalist visit, medical foods, this diet....and I would just like to know for sure at least SOME of what is going on with me. 

I have also stopped taking my medical shake as often, now I take it about every other day or two, and I eliminated the B vitamin pill - I think it was making me break out, oddly enough. I love the aloe vera though, it has helped my dry skin on my hands. 

As far as withdrawals...not so much, but the cravings are still full force. I WANT AN ENERGY DRINK. Ok, just going to throw that out there. I feel a little better now (not). And I want cake lol. Ok gotta go now before I put myself through anymore torture thinking of food I can't have. 

Things are getting better! I'm feeling better than the past 4 ish weeks. I felt a lot better when I stopped taking the medical shake as often. I think it was too much for me. 

Until we meet again......
Cheers.


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UPDATE 8/21/2012:

So, I stayed on the above diet for about 58 days. Then I re-introduced dairy because I went on vacation and it was too difficult for my family to accommodate my diet. After that, I tried to stick to the diet for the most part, but slowly started reintroducing foods and changing things. As of right now, a couple months later, here is what's up: 


BACK IN DIET 
  • sugar
  • salt (though when i get sea salt I do)
  • corn derivatives
  • chocolate
  • peanuts (but I still sub almond butter instead of peanut butter)
  • dairy / butter (I have always been lactose intolerant, but I just take lactose pills now. It's not good for me and I avoid it when I can, but for convenience sake...and taste...man i missed real cheese)
  • small amounts of caffeine (tea, cokes. NO energy drinks, mountain dews, large amounts of coffee, etc)
  • ketchup
  • small amounts of mayo, mustard


STILL OUT OF DIET

  • gluten
  • soy
  • popcorn / kernel corn
  • black pepper
  • oranges
  • peppermint
  • honey

I can definitely tell when I have had something bad to eat, and I know it plays a role in my health. I've also come to terms with the fact that a lot of the time, I'm in denial. How could I suddenly be intolerant to these things? My family can eat just fine. I was fine eating these things until about 2-3 years ago. What happened? Why now?
And trust me, I've acted on my denial. "There is no way I can be intolerant to this stuff. I'm going to eat bread and be just fine."

Days of being sick later: "WHYYYYYYYYYYYYYYYYYYYY"

So even though it's very blatant that I get sick, I still sometimes block it out and don't accept it and get sick again. It's fewer times, for sure. But it is hard to accept. You'd think, Oh food allergy thing, who cares, at least it isn't something else. But it's harder than you realize, especially when you are trying to eat with friends or people from work or just in a hurry. You worry people will think you're trying to cause trouble or just do it for attention or it isn't a big deal and you're making it a big deal.


Plus I hate explaining it to people. It either makes me feel broken or like a little freak. Because most of the time, people have no idea what concept you are talking about, or they feel so sorry for you that you want to scream. Or they are confused and just back away so they don't have to actually understand it.

Don't get me wrong, I'm dealing with it better. I have "real" foods that I can fall back on, and I've learned to like eating eggs, which helps a lot. It's just all a lot more complex than I expected. It has a ton more social implications than I expected. Sometimes I just don't want to tell people this all the time or mention it or whatever. But it just tags along into every part of my life. Who knew, right? Eating = life source = would be there all the time. 


Anyway, that's about it for this update. 
Cheers.


Update:  6/4/2013

Ok...soooooo where to start. My health has basically deteriorated so badly that I was pretty close to death and didn't realize it. 

Allow me to further explain. About Fall semester of last year (2012) my skin started turning a bit yellow. I started noticing it because when my makeup (that matched my skin) would wear off a bit, my skin would be a starkly different color from it. It was especially noticeable on my hands. My sisters and I took a picture of all of our hands one day, and my hand was so differently yellow it was freaky. We have generally all been about the same skin color/tone.
guess which one is mine


 I didn't really understand this though, and continued on living. My heart problems started up again last year as well. I used to have a very rapid heart beat, like 7th-9th grade, but it got better and basically went away. But it came back last year, and kept getting worse and worse. Jonathan bought me a pulse rate monitor over winter break and we found out my pulse rate averaged about 120 bpm. It was insanely uncomfortable, I was frequently out of breath and lightheaded, and it became a chore to do things like walk across campus or go up stairs or do any physical activity at all (starting in the Fall. I had a KINE class and there were several times I almost blacked out).

In January I went to Colorado. A place that basically made me feel like I was dying just by standing up. Skiing was an adventure with that kind of health. I survived with oxygen cans and water, thankfully. 

I had been pretty tired over this last year, but this semester seemed to hit a new low. I felt like I was always an inch away from falling asleep. Or being awake but feeling asleep. Like looking at the world through a foggy window or something. But it was like I slipped into it. It was a hectic and stressful semester with school, so I focused on school. 

Meanwhile, skin is getting more and more yellow. My family had noticed, but not really thought much about it other than "you look unhealthy, you need to eat better." and it wasn't until Jonathan started to really notice and then someone at school commented on it, that I begin to actually think about it. I decided when school was out I'd have a blood test done. 

After school ended, I started working a part time job 39 hours a week, and was just so busy that I didn't get a blood test scheduled for 2 weeks. I went in on Friday May 24th, had it done, got medicine since I had also apparently developed strep throat, and went home. 

That night, the doctor called me. Not the one I had seen, but his associate. He said that my blood tests were abnormal and that I had severe anemia and they wanted to schedule a blood transfusion for me as soon as they could. I was supposed to call Tuesday morning to set one up (Monday was Memorial day), start taking an iron pill every day, and get an appointment with a GI doctor. Apparently my hemoglobin levels were dangerously low. For women, hemoglobin should be between 12-15.5 grams/deciliter. Mine was a 5.2. 

I called Tuesday and set up a blood transfusion for Friday, May 31st. I had to go in and get more blood drawn for a "Type and Cross" on Wednesday. On Thursday, the GI doctor called me because they had a cancellation and they got me in for an appointment right away. They scheduled me for a colonoscopy and an upper whatever you call it, since I'm bleeding internally, but they don't know exactly where. Then on Friday, I went in and got the blood transfusion. It wasn't at all how I was expecting. I thought it would be like getting an IV, where you don't really feel anything after initially getting it. 

They started a saline solution first, then the blood. It made my arm kind of hurt with spikey feelings - like when your leg falls asleep and has pretty intense spikes when you try to wake it back up. I told the nurse and she put a heating pack over the injection site, which made my arm feel better. Apparently the blood, having been on ice beforehand, feels very unpleasant going in. I eventually got used to how it felt, and over a time my arm became numb with cold. 

They had given me a benadryl and tylenol beforehand to try and eliminate any small reactions or fever I might have to the blood. I got so sleepy, but couldn't fall asleep. Then I got a bit of energy after about an hour and felt better for a while, then I got sleepy again. My chest had some pains a little and felt very cold. 
It took about 3.5 - 4 hours for them to give me 2 units of blood. 

I went home afterward and slept the majority of the day. I felt very calm and slightly druggy - probably the high dose of benadryl. The most noticeable difference was my heart rate - it had slowed down to about 87 during the transfusion. The next day I was pretty tired as well, but my mind felt more alert than it had in ages. On Sunday I felt a little better, still tired, but I was moving around more. My heart rate stayed around 80-85. 

Monday I went to school and work. I walked across campus without having to stop for a break, and I could breathe through my nose instead of panting for the first time in a year or so. It was amazing. That evening I rested for a while and then I felt more alive than I thought possible. I hadn't realized how much of a prison I'd been in. The lack of oxygen to my brain had done more damage than I had understood. Just remembering this last semester especially....I'd fall asleep anywhere. Even while I was with people. I just didn't care. I was so apathetically tired all the time. I almost started crying. I feel like I've missed out on being alive. 

Today I went to the doctor to get my blood tested again. The doctor might schedule another blood transfusion for me. I don't want to do it, but I want to get it over with, and I don't want to worry anymore, and I don't want to get worse again. Then I went to school and work again. I am more tired today because I had little sleep last night. But I was able to walk very far across campus without breaking and I went up stairs too. 

And that's where I am. Quite a start to the summer, right? 

Cheers,
Brittany

P.S. As far as my diet goes, I still avoid: 


  • gluten
  • soy 
  • all sugars / syrups / sugar alternatives except for pure coconut sugar (only one that doesn't make me sick)
  • cashews, peanuts, walnuts
  • non lactose dairy products
  • safflower oil
  • caffeine, any non-water drinks except for sprite zero (doesn't make me sick)
  • sulfites
  • green #5
  • ampicillin, streptomycin
  • black pepper
  • turkey
  • carob
  • banana
  • xylitol
  • ibuprofen (I didn't take it for 6 months, so every now and then I take it if I need a non-tylenol and it does fine)
  • peppermint


6/17/2013
UPDATE: 

The blood test results came back and my hemoglobin had surprisingly gone up to 8.5. The doctor was surprised, but I guess the high dosage of iron plus the blood helped. I'm still way below what I need to be, almost by half, but I'm not in the danger zone of dying anymore, so they won't approve another blood transfusion. I'll admit, I was a little frustrated and disappointed, mainly because I'm back to feeling like I'm dying. My heart rate is still doing better and I can still walk without panting or getting those strange muscle aches after not doing anything, but I still feel so tired and just DOWN all the time. It's hard to want to feel alive or excited or happy when you feel so crushed and confined all the time by pure exhaustion. 

My heart being better has been such a relief though. Being able to walk across campus may not seem like a big deal to you, but man is it an achievement and relief for me. 

so next on the medical agenda. Colonoscopy and upper scope on June 24th. Oh boy. Where is Brittany bleeding?! It's a mystery! Soooo. Conversation killer. Glad they knock me out during that. 

Cheers, 
Brittany




8/25/2013
UPDATE: 

Soooo I had the scopes and all I can say is that they REALLY KNOCKED ME OUT. I don't remember anything from that day and had to ask my mom what happened like three times. Apparently I'm very stubborn while drugged and conscious, who knew. They found that the left side of my colon is bleeding and inflamed, for about 10 or so inches I think. The doctor said something like 28 sonograms, but I'm not sure if that's the right word he used or not. I forget. Oh and he confirmed my diagnosis as Crohns. I wasn't really surprised. My great grandma had crohns and I'm pretty sure my grandma and great aunt do too. My dad had ulcers, basically my whole family is falling apart.

 They started me on a month of 30mg steroids decreasing in dosage every week, and also on Colazal. The Colazal made my ENTIRE body breakout, and I mean entire body. I was even more diseased looking. The good news was, I have been able to eat more things, it's kind of random. For instance, I ate a BBQ sandwich from Dickeys WITH the bread (it was like a heavenly orgy with my sandwich) and I didn't get sick, but I had a cookie from the American Cookie place and it was like the end of the world, I got soooo sick. 

So I'm not sure what's up with that, but I have been having slight non gluten free, non sugar free, non everything free foods every once and a while. I'm doing a lot better stomach-wise. After taking three weeks of Colazal, I finally couldn't take the entire body breakouts anymore, and it was actually so bad I had to go on antibiotics to get rid of them and at my doctor appointment we discussed a medicine change and he changed my medicine to Sulfasalazine. So far, all that I have noticed is I am very tired, and now that I'm actually looking at the medicine info, it says to call your doctor or stop taking it. Hmmmmm. Crap. I'll call this week. Anyway, it also happens to make urine neon. Hell, I share everything on here, right? WHATEVER, IT'S A MEDICAL ISH BLOG THAT NO ONE READS ANYWAY. But yeah, you wouldn't think you'd care about that if you can eat bread, but it bothers me quite a bit. I don't like it. I just want to be normal. Being excited would be nice too. I don't think I've been excited for more than two minutes in over three years. I feel so tired. I don't know if I'll start breaking out soon from this medicine because I just finished the antibiotics, they gave me quite a long dose of them.

Uhhhhh, so that's basically it for now as far as my physical being goes.

Cheers, 
Brittany 

6/16/2016

UPDATE: 

Holy crap Brittany! Three years later and you are writing an update! Geez! Where have you been!??!!?!? Well, let me summarize: 

I graduated in August 2013 and in September 2013 moved and got my first job as a computer programmer (my fancy title is Systems Developer, and yes, i'm still at this same job)

After my prescription refills ran out from my doctor, i had to find a new one in a new city. Yay, my favorite thing to do yayyy. 

So I found a doctor at some grouping of GI doctors that all worked together. He got my records and let me tell him a quick summary, saw that i wasn't in immediate distress so he was like k cool imma leave you alone, just go get a blood test and youre good to go. He gave me 3 months of refills i think. 

Long story short, he didn't really seem to care about me at all, would make me come in just so he could not care about and order a blood test, so i was paying like ~$170 per useless visit and didn't feel like he was trying to improve my life at all, was just trying to get me in the office as much as possible so he could get more money. 

So, because the place he was at is pretty close to my home and one of the only groupings of GI doctors within an hour of me, I asked if i could switch to another doctor that i had heard good things about since being in my new city for longer. They said i couldn't switch because they had a policy against it - some kind of non-competition thing. 

They basically had every good GI doctor i could find online in their network and were saying i couldn't switch even though i wanted to. I was so furious. How can doctors say they are only interested in your well-being and the minute you want to try and improve that, they are like nah, i really just want your money as my patient. It was veryyyyyy frustrating and i kept trying to find another doctor that sounded good to go to and was unable to find another. So i continued going to him and getting refills for the same prescription. 

Finally, after searching yet again for another doctor and asking around to people i knew with crohns, i got a recommendation for another doctor in a city like 35 minutes away - but alas, it was the same network of doctors as my current doctor. I despaired, and then i was like, wait, maybe i can play the gender card - because my current doctor was male and the one i wanted to try to go to was female. so i could say i was more comfortable seeing a female doctor and i didn't think they would deny my switch. Honestly, i don't care if my doctor is male or female, i just care that they care about me. So i requested the switch saying i wanted a female doctor instead and after some hassling and approvals, got the switch done.

By this point, it was April 2015. (oh and i got married in April 2014. Woo!). My medicine, sulfasalazine, for the most part, was doing its job. I was bleeding occasionally, but had no stomach pain. When i did it normally had to do with some weird food i ate and didn't last too long. I was also however, losing chunks of hair, extremely fatigued 24/7, and got a migraine almost daily. 

I went to my new doctor. I told her what was going on with the symptoms above and she seemed to be in a hurry. She tried to press me to try biologics but biologics scare me and i told her no. So she quickly told me she was switching me to liada, gave me a week trial pack, and had me on my merry way to take another blood test. 

I started the lialda and my migraines intensified by 1000%. Every minute was my head pulsing and pounding and i just wanted to lay down all day, but unfortunately i had to go to work. All of my stomach issues came back as well, it was like i wasn't even taking medicine. I called my doctor a day or two in and told her and she said i just had to try it for longer. 

Meanwhile, I can barely live guys. My symptoms without medication pretty much have me doubled over in pain in a bathroom somewhere 24/7. But I powered through.

When the week was up i went to go pick up my prescription for a month at the pharmacy and was told it was like $600 after my insurance and with a coupon. I panicked, because hell, who has that much expendable income? Sulfasalazine was costing me like $35 a month at its highest. I called the nurse line and requested i be put back on sulfasalazine and after a lot of holding and shuffling, they called in my prescription and i got sulfasalazine again.

I also went to a dermatologist for my hair because as much as i want to say im not vain and mean it, I really didn't want to lose my hair. and from the amount falling out each day, i was well on my way to losing it. She gave me spironolactone and after some trial and error gave me a dosage that worked for me. my hair stopped falling out.

I continued living in 2015 with extreme fatigue daily and regular migraines. Towards the end of the year I got a ton of deadlines at work and started getting really stressed out and bleeding more. 

This year, i went back for my annual visit because she had said as long as i wasn't bleeding i didn't have to come back for a  year. But when i started bleeding i didnt want to go back. i just took iron pills regularly.

So April 2016. I was planning on making an appointment but that was expedited when my prescription refill got denied. I called to ask why they denied it and they said i had to come in first and that they could write a prescription only for the number of days leading up to my appointment. I got the closest appointment they had, which was in like 2 days with my doctors PA, and i was like really? Hang not having medicine over my head? and then when i make an appointment say you'll only give me enough pills to last until the appointment? You literally want me to drive to the pharmacy again, wait in line, to pick up like 12 pills? and then do it again in like 3 days to pick up my month's supply? Really? WHO HAS TIME FOR THIS KIND OF CRAP? I'd like to hold your life saving meds over your head too until you do whatever i want.

Anyway, i went in for the appointment - which i have to pay for parking too by the way - and saw the PA, who was male. I actually really liked him. He sat and talked to me about everything for like 15-20 minutes or something and looked genuinely concerned about my well-being. We talked about medicine alternatives and I told him i was afraid to try biologics. Nothing new came of the appointment except medicine refills and a blood test, but that's pretty normal.

Unfortunately with crohns, there just aren't that many medicine options. There are three classes essentially:

sulfasalazine and 5-ASAs (mesalamine)
Immonomodulators
Biologics

I'm on sulfasalazine, i've tried three 5-asas and they haven't worked / gave me a reaction, immonomodulators are like a million dollars, and biologics are scary and expensive and don't have as much testing research done on them that i can find. I've actually been trying to look up all my options as much as I can, not that it's making me feel any better.


This is some of my research. Unfortunately i haven't found an all inclusive resource online for this type of thing so i've gathered this info from places all over online. A lot  of sites seem to have conflicting / not complete info. Even source websites don't have a lot sometimes. So none of this is guaranteed correct or reliable, it's just what ive been able to find. 























I also went to a nutritionalist this year in March 2016, thanks to my oldest sister's persistent nudging. It was like $120 or so and I got some weird vitamin things out of it. She just told me what i expected to hear: don't eat sugar or gluten or anything you want to eat and also to start taking weird vitamin things:

Calcium D-Glucarate vegcaps by Integrative Therapeutics
Iberogast 100ml 3.4oz by Medical Futures Inc.
Permeability Factors  by Integrative Therapeutics
Tyler Similase Sensitive Stomach by Integrative Therapeutics
RepairVite by Apex Energetics
EnzymixPro  by Apex Energetics (digestive enzymes)

And she also suggested i take a morning shake with berries and spinach/kale with plant protein powder. The two protein powders she suggested were, 

Sunwarrior - Warrior Blend, RAW plan based protein in vanilla
Thorne Research - VegaLite Vegan friendly performance protein powder in vanilla

I got all of these except for the repairVite. I like them all except for the protein powders and iberogast. The iberogast tastes kind of like tea tree oil, if you have ever had that, so it's disgusting. and I tried the Sunwarrior protein powder and no matter how hard i tried couldn't make it taste good so i gave up. it was like eating chunky gritty dirt with kale.

I also started taking quite a bit of vitamins these days - I started probably around April/May.




 I don't take every single one of these every single day, but i try to take one column one day and the other the next and i skip most weekends. I think one / some of them help with my depression. I'm better now, but basically January through May I have been battling some pretty terrible depression. I don't think it helps that my husband and i are essentially alone in the city we live in and everyone at my work is at least 20 years older than me.

I've been trying to think of how to be happy. I guess the following reasons are really bringing me down:

1) I may not be completely sick everyday, but i still have stomach issues to attend to, diets to confine myself to, and the feeling of being off 24/7
2) i'm always tired. Always. Even when i sleep like 12 hours on the weekend, i never feel rested. I don't remember the last time i was excited about something. I feel like I'm wasting my life away. Like I'm going to wake up in 10 years and go, this is all i did the last 10 years? I couldn't have tried to do more? 
3) 90% of my friends and family live 3.5 hours away and i hate talking on the phone
4) Every day seems so monotonous and useless. I've always had a goal in my life before this segment of my life. In grade school, get good grades, in high school, be valedictorian, in college, pass all my classes and get a job. Now that i've gotten a job and i'm married, what's my goal now? What do i do with myself? What can i do with myself? I work 45 hours a week like a robot in a job that's never going to promote me, and then i come home and do the same exact routine of making dinner and cleaning and doing chores and editing pics if i need to or researching some new disease related issue that's come up. 
5) at work everyone is at least 20 years older. most of them have like 4 year olds because people wait so much longer to have kids now. it's creepy and depressing.

lol i'm not making myself feel any better. 

anyway.

I recently came across something online that i really liked, they are called Beads of Courage. You may or may not have heard of them. Let me copy some from their website to explain them. 

------------

http://www.beadsofcourage.org/

"The Program is a resilience-based intervention designed to support and strengthen children and families coping with serious illness. Through the program children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path."

The Beads of Courage Program is available for the following:
Cancer and Blood Disorders
Cardiac Conditions
Burn injuries
Neonatal ICU Families
Chronic Illness

Ongoing evaluation of the Beads of Courage program indicates that the program helps to decrease illness-related distress, increase the use of positive coping strategies, helps children find meaning in illness, and restore sense of self in children coping with serious illness. The program also provides something tangible the child can use to tell about their experience during treatment and after.

------------

Chronic Illness! Hey, that's me! So the program itself only gives beads to kids that are approved or whatever, but i liked the idea and wanted to do it for myself. So I went to Hobby Lobby one weekend with my middle sister and we picked out some beads for some things i wanted to represent. 





Here is mine from the medical history that i could remember. 

Red short beads - blood tests (counting each session, not each vial)
Black long beads - x - rays (counting each day/session, not each individual x-ray, or there would be like 14 beads lol)
honeycomb brown medium length beads - IVs
Round sun dial silver beads - scopes (top and bottom)
Heart shaped silver and black bead - blood transfusion (each session, not each unit. I got 2 units)
white bead - finger pricks (need to add more of these)

I'm not going to wear it, but i was thinking about putting some kind of hook on the wall somewhere and winding it around it, with a little place on the hook to keep the spare beads. Then i can unwind it and add to it as i have stuff done. I liked the concept. It makes it seem less daunting when I have to do things because I can be like, if i do this, I can add a bead to my necklace. When you look at it straight up, it's completely silly. But it makes me feel better so whatever.


This past week I've developed a new strange pain. It took me a while to notice because it kind of feels like hunger pains, but it's higher up in my torso, kind of in the middle of my chest / upper stomach / lower esophagus. It hurts whether i eat or not, and it was really bad last night, it woke me up from the pain. After I eat I kind of feel like my food is pressing in my throat like i might throw up, and the other day after lunch i kind of spit up a little. Gross, i know, i'm sorry, i'm disgusting. I messaged my doctor about it through our patient portal so we shall see if she responds before the weekend. i would really love to be able to take something for temporary relief at least. 

That's about it for now. 

Cheers, 
Brittany




3/7/2017

Updatesssss.

The last time I wrote, I was saying how I had weird pain in my upper chest and I had emailed my doctor about it. It's super weird. Sometimes it's straight up pain, and sometimes it feels like I'm hungry, except that I KNOW I'm not hungry because I've just eaten or something. That's when I know it's back. If I feel hungry but I've just eaten. Then I know it's the sneaky pain. 

My doctor said she thought it was either peptic ulcer disease or gastritis and suggested Prilosec OTC for as long as I had symptoms. I think I had to end up taking 3 bottles of them before it went away, and I tried to avoid things that would aggravate it. 


Also, I have had a lot of issues with my voice getting super hoarse. My friend with Crohn's has a hoarseness issue too and went to an ENT and they did a throat scope and saw that the muscles on each side of her vocal cords were swollen and she went to a speech therapist for it. It was really bad around September 2016 and I emailed my doctor again and she said she thought it might be related to the above or be an acid reflux thing and again suggested Prilosec OTC. It helped.

I also went to an allergy doctor and was diagnosed with asthma last summer. I had had a couple instances where i felt like my throat was getting smaller and had to use jonathan's inhaler. They tested my breathing the first time I went in and then again at my checkup and said that it was significantly better the second time. At first I thought this was good news, but apparently people's breathing capacity / ability fluctuates a little bit, and that's normal - ie like 5%. But if you have asthma, your ability to breath / capacity fluctuates a lot more - ie 10%+.


I'm still taking quite a few vitamins...



I've tried to rotate this photo like 15 times and it's not having it, so I've given up. Basically, 5 days a week I take iron, potassium, folic acid, calcium, and chelated zinc.

Recently, I've been having a bad time with my blood sugar - i'll get super shaky and won't feel good at all. I've always kind of had low blood sugar issues but it's been worse lately. I realized today that it might be because i ran out of zinc about two weeks ago and haven't been taking it. As I was taking my vitamins today and realized this correlation, i googled it and found this:

"Zinc is highly concentrated in the islet cells of the pancreas, where insulin is produced. Zinc promotes healthy insulin function, can provide natural blood sugar control, and might even help to prevent diabetes in the first place."

WHO FREAKING KNEW? NOT ME.

Ok, so since i was googling blood sugar and sulfasalazine to see what people said, I have also just been googling sulfasalazine and found lots of interesting information about Sulfasalazine and the effect it has on a person. I also have been looking into deficiencies caused by crohns and such so I can request my doctor to test certain things at my next appointment. I've added this information to the Sulfasalazine and Crohns tabs. 

That's it for now.
Cheers, 
Brittany





























4 comments:

  1. Good Luck with everything!! Some people read your blog! :)

    I haven't been through everything you have (just some thyroid cancer and anaphylaxis). Ha! But I know what you mean about the allergies and diets. People look at me like I have two heads when I say I have exercise-induced anaphylaxis. We don't have any idea why either. I have a shellfish allergy already, but we're thinking maybe wheat too? We'll see!

    Good Luck!

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    1. awww, thank you!! It is nice to know some people can relate :), even though I am so sorry for your problems! I hope you get better soon, and yes, it definitely might be the wheat! Although I've found that all types of sugar are pretty terrible too...Good luck!

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  2. So I stumbled across your blog while doing research on the LRA by ELISA/ACT blood test and I thought it was (in that weird, I'm not alone way) comforting to see you are around my age. Then I see you like photography (one of a biggest passions), which I thought was cool. But the cherry on top of the what-a-friggin-coincidence sundae is...you apparently go to A&M. I'm actually from Bryan and now go to Sam. Small world, huh?
    So, I'm sleep deprived and having 'one of those nights' so I kinda skimmed through some of your entries. I'm interested in the blood testing for fibromyalgia(I was diagnosed almost a year ago at 24). I was wondering if you've seen at least decent improvement utilizing the test results. My mom and I both have fibro and we have been discussing if one of us should get the test first incase it turns out to be like...well, every other treatment we've tried. Basically, a big fat waste of money and months of obsessing over the most minute fluctuations, desperately hoping they are actual results.
    Something tells me you understand that completely. I'm in college, I have no definitive schedule and, frankly, if this is just another expensive bottle of snake oil, I'd rather just feel like death and buy a new camera for my study abroad trip in December.
    Sorry this is such a novel...I could ask about a million more questions, but I'll refrain currently. Anyways, I hope your health has improved. I also hope there's a bit of solice in knowing there's someone near you that understands how much it sucks being so profoundly effected by your health at a young age...and the struggle to remain optimistic because people just don't like Debbie Downers.
    Lastly, congrats on your engagement! I hope to be in the same place with my lovely, wonderfully supportive boy once I graduate :-)
    With midterms coming up and my preparation for international travel, if you'd like to just email me(because fibro fog really does make me forget the weirdest things...like commenting on your blog), that would be awesome. Thanks so much and I really, really hope to hear from you. Good luck with your battle.
    My email is amd056@shsu.edu
    <3 Ashley

    -fall down 7 times, get up 8-

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    1. Thank you for your comment!! It really does mean a lot to find someone who understands. I have emailed you quite a novel. :)

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