​For a long time, I felt like my life was over: my dreams of playing volleyball and going to a strong academic university were crushed by my debilitating nausea. But, my family, friends, and doctors all encouraged me that things will improve, it is just a matter of time. Finally, in the summer of 2018, I saw a dramatic improvement in my nausea, nutrition, and overall quality of life. I was back in school, I was going out with friends, and I felt normal again. I started to realize that even though I might not be able to have the future I’d always dreamed of, I had something better: a new dream.
 
I had always taken an interest in the biological sciences, and suspected that I would likely want to major in a science-related field. But, it was because of all my health issues that I definitively knew I wanted to become a doctor. For high school, that means taking AP science courses and filling my schedule with rigorous classes. Right now, because I’m in the credit recovery program, I’m not able to take those classes. This year I’m going to try and get all of my prerequisites and graduation requirements completed, that way next year, I’ll be able to focus on a few more advanced courses, such as AP Biology. I also hope to volunteer at Cedars Sinai, the hospital where I was a patient. Having this goal has given me a new purpose, and pushes me to be at my best.

​In October of 2016, when I first went to the hospital, my entire life, including my schooling, came to a halt. Even after my pain was gone, I was left with my debilitating nausea, and thus poor nutrition. I couldn’t concentrate, remember information, and just think in general. I was able to scrape by and finish my first semester of English 2A Honors, Computer Science Principles A, and Symphony Orchestra A with a lot of help from my teachers. But, I ultimately decided to take the rest of the 2016-2017, and the 2017-2018 school-year off to focus solely on my recovery; instead of graduating in 2019, I’ll graduate in 2020.
 
In the summer of 2018, I saw a distinctive improvement in my nausea and eating habits, and was able to take English 2B, and PE through Calpac, an online public school. For the 2018-2019 school-year, I initially tried to go back to my regular, public school through an online program that they offer for students who need special accommodations. But, the structure of the curriculum was not suitable for me: it was reading large blocks of text, no practice questions, little assignments, and no quizzes; it was basically only reading and taking tests. In other words, I didn’t feel like I could succeed. The school administration was very supportive when I informed them in mid-October of my decision to move back to Calpac. I waited until October to switch, instead of switching at the very start of the school-year in August, because I was in the process of getting an IEP, which is what will allow me to graduate in 5 years instead of 4.
 
Ultimately, I think that switching schools was the right decision, because I am currently enrolled in a credit recovery program, which allows me to take a few classes at a time, and then add on more classes whenever I finish the initial ones. So far, in the month that I’ve been in enrolled at Calpac, I’ve completed English 3A Honors, Spanish 3A, PE A, and College Career and Readiness A (a required course). I’m also about to take my final for English 3B Honors, Pre-Calculus A, and Spanish 3B. For a normal person, this would probably seem like a lot, but because the information is condensed in the CR program, and I pretty much do schoolwork from sunup to sundown, I’m making exceptional progress.
 
For the rest of this school year, I plan on continuing the CR program to complete as many classes as humanly possible. For my senior year in 2019-2020, I hope to reintegrate back into my public school by taking a few AP courses in-person, ones which the CR program doesn’t offer. I’ll still keep the course load lighter, but I’ll be able to rejoin some of the clubs and groups that I was in before my health took a bad turn.

It’s no secret that antihistamines, especially Benadryl, make a person drowsy. It only makes sense that with MCAS, the mast cells specifically in the brain are hyperactive producing an excess of histamine, cause a person to have a feeling of wakefulness. Even though normally being on a plethora of antihistamines would help someone fall asleep, because I’m taking so many, it sometimes has the adverse effect.
 
My nausea is especially what keeps me up at night. A few times, going to bed late has turned into an all-nighter; having stayed up for so long because of the nausea, even when it subsides, I’m just never going to get sleepy. It sucks, plain and simple. Not just because I feel like I’ve been hit by a bus the following day from lack of sleep, but also because I can’t drive anywhere (driving without sleep for 24 hours or more is just as bad, if not worse, than driving drunk). The worst part about an unpredictable sleeping schedule is when I’m awake, everybody else is asleep. The one good thing that comes out of pulling an all-nighter, is that I’ll go to bed early the next night, and get closer to a normal sleeping schedule.
 
For awhile, my sleep was improved because I started taking the Doxepin, which knocks me out. But, when I was prescribed the Methylprednisolone (the steroid) in October, my sleep has gotten much worse. Because one of its biggest side effects of taking the Methylprednisolone for me is insomnia, I’m wide awake basically all night. Right now I’m getting an average of 4-5 hours of sleep, usually from about 5:30 a.m. to 10:00 a.m. Now that I’m starting to slowly taper off of the steroid, I am looking forward to getting better sleep in, what is hopefully, the near future!

​Since being diagnosed with MCAS, I’ve cut out all of the aluminum, sulfates, and parabens found in my shampoos, conditioners, body washes, creams, lotions, deodorants, and other beauty related products. I’ve never used a ton of skincare products unless directed by a dermatologist, so there was never a really big change there. There was one time, however, when I reverted back to one of my old ways, which I now know, is an absolute no-no for MCAS.
 
I was in the middle of a MCAS flare up from food I’d ingested, getting red bumps, a rash and not acne, all over my cheeks, forehead, and neck. I’m lucky because I haven’t had acne since going on Accutane when I was 14, so any type of flare like this really messes with my confidence, and self-perception in general. In an effort to reduce the rash on my face, I decided to use Retin-A, which has helped me with minor acne in the past. This was my mistake, a big one at that. I woke up the next day after putting some on the night before, and my face was 10 times worse. I was so mad at myself because I couldn’t believe I had ever thought using the Retin-A was a good idea: putting chemicals on your face when you have a severe reaction, a rash in particular, to any chemical contact? Yah, I know right. Well, I guess everything is a learning experience. Now I know.
 
Since I started taking the Methylprednisolone, I’ve definitely had and increase in the amount of acne on my face. One of its side effects is increased acne, so I was expecting this, and about 3 weeks after I started taking the steroid, I started to notice the slightly larger red bumps (not quite zits, but different from the MCAS bumps) on my cheeks and forehead. In the photos I took this morning and included below, some of the red bumps and a bit of  resulting scarring is visible. However, this is when my skin is doing better, and my MCAS isn't flaring as much. Normally my acne is more prevalent.

​Because of all of my problems with nausea and consequently, getting enough nutrition, I just see eating as a necessary burden to survive, rather than a source of enjoyment. Right now, I am able to get on average 1000 calories a day, and the TPN and lipids supplement what I’ve estimated to be about 1,800 calories at night.
 
As for my safe foods, right now my diet consists of:
Lundberg Family Farms Organic Brown Rice Cakes (Organic Whole Grain Brown Rice, Sea Salt): 3 cakes per serving
Pressed Juicery Greens 2 (Apple Juice, Cucumber Juice, Celery Juice, Romaine Lettuce Juice, Lemon Juice, Spinach Juice, Kale Juice, Parsley Leaf Juice): ½ bottle per serving
Trader Joe’s Corn Tortillas (Stone Ground Corn, Water, Traces of Lime): 2 tortillas per serving
Organic Honeycrisp Apples from Trader Joe’s or Whole Foods: one medium to large apple per serving
Organic Grilled Chicken Breast (Organic Chicken Breast from Whole Foods or Lazy Acres butcher, Trader Joe’s Olive Oil Spray, Salt, Pepper): ½ or 1 thinly sliced Chicken Breast
Arugula “Salad” (Organic Arugula from Trader Joe’s or Whole Foods, Trader Joe’s Olive Oil Spray, Organic Lemon Juice, Salt)
Organic Flank Steak (Flank Steak from Whole Foods or Lazy Acres butcher, Trader Joe’s Olive Oil Spray, Salt, Pepper)
 
I try to eat as organically as possible and prepare everything myself, that way I know exactly what goes into my body. Since food releases histamine the longer it is stored (unless you freeze it), I try to make everything fresh right before I’ll eat it.
 
Also, I try to force myself to try new foods even when I don’t feel good, so that way I have more safe foods and rely less on foods without a lot of nutritional benefit. My goals for this week are to try celery juice, which I heard can help with POTS; try bananas, so that way I could freeze them and add protein powder to make a banana ice cream; and to try another “salad”, to alternate with the arugula salad.
 
Having the TPN going in at night alleviates a lot of the pressure that comes with wondering what and how much I’m going to eat everyday. The purpose of the TPN isn’t just to help me gain weight, but also to be able to add in enough new foods so that way I can go on a rotating diet. My one dream food-wise would be to have peanut butter again, but that isn’t realistic because that is one of the foods that I have the worst reaction to. My Pediatric GI doctor has jokingly told me that she would personally come over to my house and kill me herself if I ever tried it again.
 
In simple terms, if I didn’t need to eat, I would actually feel pretty good (other than the symptoms that come with low blood sugar), because food is the main source of my nausea. As soon as I get the MCAS under control, I should be able to eat a larger variety of foods without feeling worse, and be able to enjoy food again.

​Right now, I take a variety of medications to treat my POTS, gastroparesis, and MCAS. This includes anti-histamines, mast cell stabilizers, GI motility drugs, steroids, and fluid retention drugs, as well as a couple of supplements. Because I have MCAS and could potentially react to certain additives found in prescription medications, many of my medications are compounded through a local pharmacy that uses special encapsulations with less ingredients, which are derived from vegetables.
 
I wanted to post my medication list because I think that it could be useful information for someone struggling to get their symptoms under control. In the past, my mom and I would research online for new medications to bring up to my doctors. Both of my GI doctors also came up with new ideas on what medications might help me. However, I must preface this post by saying that I am in no way qualified to give direct recommendations as to what medications a person should take, and a doctor should always be consulted when it comes to medications.
 
Mestinon 30 mg 3x day: For GI motility and POTS
Florinef 0.1 mg 1x day: For POTS fluid retention
Cromolyn 200 mg 4x day with meals (compounded): MCAS stabilizer
Zantac 150 mg 2x day: MCAS anti-histamine
Xyzal 5 mg 3x day: MCAS anti-histamine
Ketotifen 6 mg 3x day (compounded): MCAS anti-histamine
Quercetin 1000 mg 2x day: MCAS stabilizer
L-Carnitine 1000 mg 2x day: mitochondrial supplement
CoQ-10 100 mg 2x day: mitochondrial supplement
Singular 10 mg 1x day: MCAS anti-histamine
Doxepin 150 mg 1x day (compounded): MCAS anti-histamine
Benadryl 50 mg as needed every 4 hours (dye free liquid): MCAS anti-histamine
Methylprednisolone 10 mg 4x day (compounded and weaning off): steroid
Creon 24,000 up to 6x day with fatty foods: pancreatic enzyme
 
Out of all of the medications I take, the Benadryl has the most impact on how I’m feeling. For most people with MCAS, it is a rescue medication, but for me, I rely on it daily to help me function. For some reason, I haven’t been able to figure out why it only sometimes makes me sleepy. The Methylprednisolone gives me the most negative side effects, and even though I am weaning off of it, I still get hot flashes and night sweats, acne, “chipmunk cheeks”, and insomnia. For awhile, the Doxepin would put me to sleep at night, but since I started taking the Methylprednisolone, my sleep has gotten worse again. There are quite a few other antihistamines in my medication regimen, but I don’t feel any greatly significant effect with those. However, I’m not going to go off of them because I don’t want to change anything now that I’m on an upswing.

Everyday for the next week, I'll be updating my blog with a new series titled All About. In this series of posts, my goal is to share with you more detailed insights on the various aspects of my life concerning how I live with my digestive diseases, and hopefully you'll be able to learn valuable information from my own experiences.

For the past 2 weeks, I’ve been receiving TPN and lipid supplemental nutrition through my PICC line placed in my upper left arm. Twice a week at home, a nurse comes over to draw blood and do sterile dressing changes, but otherwise, I manage the administration and upkeep of the PICC. On a weekly basis, I receive mail deliveries with the supplies I need: refrigerated TPN and lipid combinations, refrigerated vitamins to add to the TPN/lipids, refrigerated saline bags, tubing, gloves, saline flush, heparin flush, alcohol swabs, etc.
 
Starting at 10:00 at night, I add the vitamins to the TPN/lipids, place the in the tubing into the mini IV machine, and then plug that into my PICC. It runs over 12 hours while I sleep, tapering up for the first couple hours, and tapering down for the last couple hours. Then, at 10:00 am the next day, I disconnect myself. A few hours later I’ll connect a liter saline bag to the PICC which goes in for 2 and a half hours. Then when that’s done, I’ll connect another liter saline bag. The main purpose of the PICC is to get supplemental nutrition, but I might as well get extra fluids for my POTS while I have it. Every time after I finish either the TPN/lipids or the saline, I have to first flush the PICC with saline to clear the line, and then with heparin to prevent blood clots.
 
The main concerns with having a PICC are infection and clotting. If there is any pain, redness, or other red flags, I have to either have my nurse come over to check it, or go directly to the doctor or emergency room. Just last Tuesday, I had to go the emergency room at midnight because I was having some pain at the sight of the PICC, and there was some blood as well. The doctors weren’t too concerned with it, but they ordered an ultrasound of my vein the PICC is placed in, just to make sure that there was no blood clot. Everything was fine as expected, and I haven’t had any problems since.
 
I also have to take my blood sugar 1 hour after the TPN/lipids start and 1 hour after they finish because the infusion raises blood sugar significantly. I just have to make sure that it doesn’t get too high after it starts or too low after it finishes.
 
The TPN, lipids, and vitamins that go into the PICC are 100% absorbed. I’m not sure the exact calorie count that goes in, just because of the way it is formulated, but my doctor estimates it to be equivalent to 1,800 calories. I weighed myself this morning and it was 131.2 pounds: I gained just over 11 pounds since the PICC has gone in!
 
With the PICC, I feel like a weight has been lifted off of my shoulders. If I have a bad day and eat hardly anything, I don’t have to worry about losing weight. If I have a great day, I know that I’m going to gain the weight I need. I can try new foods without the possible threat of having a flare up that would prevent me from eating. The goal is to have the PICC in for about 2 months. During that time, I hope to gain back even more weight and add more new foods to my diet.

Putting back in a feeding tube has been brought up to me a few times. Usually, it is whenever I’m in a flare up so I’ve lost a significant amount of weight. I’ve always said, if I ever drop below 125 lbs. for longer than 1 week, then I’d be willing to have another feeding tube. Since I’m 18 now, I have to make a conscious decision that if I’m at a point when I can no longer support myself orally, and am clinically malnourished (meaning I’m at a higher risk for disease and death), I will have to help myself by letting other people take control. Until then, though, I’ll rely on my own ability to get proper nutrition.
 
There is another option though. Instead of putting in another feeding tube (either through the nose or a direct port), I could go back on a medication, thats side effects makes me ravenous: Cyproheptadine. I originally tried it about a year ago as a nausea medication. It didn’t help my nausea at all, but it made me so hungry I was stuffing my face without end. Since my main source of nausea is food, I was miserable. I couldn’t stop putting food in my mouth; I ended up gaining 10 pounds within the 2 weeks I was taking it. Though everyone, my doctors, parents, and I, were happy I gained back some weight, we agreed that because of how poorly I felt, I would go off of it.
 
After having both a feeding tube and the Cyproheptadine as treatment options in the past, ultimately I decided that if I reached the point where I couldn’t get nutrition on my own, I would rather have a feeding tube put in than go the torture of the Cyproheptadine.

A little while ago, my pediatric G.I. doctor brought up the idea of a support group she was trying to form. She has a lot of teen girls with MCAS that are going through the same things as me. It’s nice to know that I’m not alone in figuring out how to balance my illness with the life I want. But, for now, I just don’t want to talk about my feelings with strangers.
 
Sometimes, I’ll avoid people I know to prevent an awkward encounter, because I know that I’m going to get asked about how I’m feeling, or how I’m doing, or how’s school going. That can really stress me out. I usually just give some bland answer like, “Hi…I’m doing okay...I’m hoping to be back at school really soon.” I am thankful that I have people in my life that are concerned for me, and care about me and what’s going on in my life, but sometimes I just need to forget about my conditions, my symptoms, and what I call “the downfall of Ivy.”
 
Joining a support group would just put a spotlight on all of my illness-related issues. For the time being, I am just going to focus on getting back to school and figure out the rest as I progress in my recovery. Although I’ve heard a lot of great things about support groups, and think that for some people it really helps, I just don’t think it is for me, at least not right now.