So Much For Remission

It has been months since I have posted a blog entry.  Ooops.  A lot of that has to do with the severity and frequency of my symptoms.  For a while I felt like my autoimmune diseases controlled my life, and as my hive flare ups got fewer and further between I was excited to be getting my life back and putting this whole experience behind me.

Spoiler Alert: NOT SO MUCH

I have still been consistently working with my functional medicine doctor, Dr. Rosinski, although not really following everything he says.  It was really rough for me sticking to an autoimmune paleo/low histamine diet because it felt like EVERYTHING was restricted.  I also wasn’t that great with sticking to taking my supplements because my thyroid is always swollen so I have to choke them down and 8 – 10 pills per meal is not really a fun thing to have to do consistently.  Regardless, my symptoms were improving and slowly I got to where I was taking my antihistamines only once every 24 hours.  Then it progressed even further to where I would go a few days and only use the antihistamines as needed.  Even then, my flare ups were super mild and I stopped being itchy almost immediately after taking my antihistamines.  All signs pointed in the direction of me going into “remission” where my diseases and symptoms are mostly under control.  I don’t really know what to contribute that to, because like I said I wasn’t really doing the things I was supposed to as far as diet and taking my supplements goes.  I guess I’m going to give Dr. Rosinski the credit because he is who I have been working with on this and I did do SOME things he told me to at least.

On July 17th I had a jiu jitsu competition in New York and I noticed that the week beforehand my hives started to get a little more frequent and severe.  I didn’t think much of it because I figured that after the competition they would calm down again.  For whatever reason (I’m thinking because I’m crazy), I decided the Monday after my jiu jitsu competition in New York that I would sign up for yet another competition July 30th.  I figured it was only two weeks away so not too much time to stress over it and then it would be over with.  I am now starting to think it was a bad idea because my hives have increased to where I am slowly getting back to having to take antihistamines twice in a 24 hour period, plus my flare ups take much longer to subside even after taking the pills.  Essentially it is starting to get back to where I was before I made all this progress it feels, and I am scared that it will get to a point where I have to go back on steroids.  I am still clinging to the chance that the hives will slowly calm down again after the competition in a couple of days.  After all, it is only 2 days away at this point.

Besides hoping for the best post-competition, I have been doing what I can by getting back on top of taking my functional medicine supplements like Dr. Rosinski suggests.  I am still not following an autoimmune paleo diet like I probably should be (and like Dr. Rosinski would like me to be), but I am starting to make a stronger effort to be gluten free at the very least, since that is one of the more harmful things that can get into your bloodstream through leaky gut syndrome.  Dr. Rosinski told me something along the lines of whatever makes up gluten looks very similar to your thyroid, which is one of the reasons your body attacks the thyroid and also why Hashimoto’s patients should make an extra effort to avoid gluten (oops again).

Another thing to note is I keep getting abscesses behind my ears for whatever reason and they seem to be becoming more frequent.  I got one a few months ago and got it drained but didn’t take any antibiotics for it because they said they didn’t think I would need it.  A couple months later I got another one on the same side, so again got it drained and this time I took half of the antibiotic prescription, but then they told me that the culture came back with no infection.  I stopped taking the antibiotics because I didn’t want it to ruin my leaky gut progress, but there is definitely a chance that the half course of antibiotics had an effect on my progress anyway.  Still, I think the most noticeable changes in symptoms have been when I am really high stress, even if it is subconscious stress.

So that’s my update on my medical condition(s).  They have come back to haunt me and it is just a reminder that autoimmune disease is treatable but not curable, and it is something I am going to have to learn to deal with and manage for the rest of my life.  Regardless of whether other people understand it, I need to get back to focusing on taking care of myself first instead of giving in to the pressure to always do more, more, more.  Still a work in progress.

Nutreval Test and Adding Supplements

It has definitely been a bit since I have posted an update.  Time has just been flying by lately.  I feel like I just saw Dr. Rosinski yesterday and I already have a phone conference with him this coming Monday again.  Anyway, last time I saw Dr. Rosinski he helped set me up for a new test – the Nutreval test.  It involves me taking my own urine sample first thing in the morning and then going to a testing center to give them the sample and have them take my blood sample.  The test provides an analysis of a few different things, including antioxidants, B Vitamins, digestive support, essential fatty acids, and minerals.  This will further help to see where my deficiencies are in order to help us figure out how to correct my imbalances.  Another interesting part about the Nutreval test is that I was supposed to stop taking my supplements for four days prior to the test.

I met with Dr. Rosinski last Tuesday and planned on taking the test this Monday, so I stopped taking my supplements last Thursday.  I also may have cheated a bit on my food choices because I felt like since I was off supplements it wouldn’t matter.  I’m sure Dr. Rosinski would not have approved, but I have really been struggling with not being able to eat any of my favorite things.  On Monday I woke up and went to the bathroom without even thinking about it, so I wasn’t able to collect my urine like I was supposed to.  I ended up being off supplements for 5 days then because I did my test on Tuesday after screwing it up Monday.  Right after I got my blood drawn and got that taken care of I went to Dr. Rosinski’s office and he gave me three more supplements – sulfur tablets for my skin/hives, a Vitamin D supplement, and a greens powder called paleo greens.  I had actually requested a greens powder from him, because I feel like I am having a hard time getting in all of the greens I should be.  I have been making kale smoothies with approved fruit and also made some mason jar salads to bring to work, so I am doing the best I can but I can always use some help.

Anyway, that night I took the paleo greens and not too long after had the ABSOLUTE WORST flare up I have had in a long time.  I didn’t realize at the time that it might have been the paleo greens, because I thought it might have just been stress from my test that morning and knowing I needed to not screw up the urine sample again.  The hives were terrible on my face and I got some swelling around my eyes even.  I took my antihistamines but things just seemed to be getting worse, so I texted Dr. Rosinski and he told me to try the sulfur tablets.  You put 5 of them under your tongue and let them dissolve.  The sulfur helped pretty quickly but I wasn’t back to my “normal” (which isn’t really normal cause it’s still pretty hivey but much better than it was that night) until the next morning.  I will have to pay attention to when I try the paleo greens again and see if that is really what made me flare so badly or if it was something else.  I really hope it was something else because I was excited about the greens powder and I paid a decent bit for it.

Since then I have been back on track with my supplements and with eating right, as much as I hate it.  I guess this is Day 3 of being “good” again and being back on all my supplements, including the new ones.  I am excited to see what the results of the Nutreval test are, but they won’t be available for a couple of weeks I believe.  I have been good enough that I have been able to go back to jiu jitsu a bit, which definitely makes me happy.

Last Friday I had off from the office because of it being Good Friday so my mom and I were able to have a little AIP cooking party.  We made zucchini lasagna (which is delicious and has been my lunch almost every day), coconut macaroons and AIP crackers made out of plantain flour and water with some AIP guacamole to go with them.  Since then I have made more crackers a couple of times now and I am making more macaroons tonight.  They are such a delicious sweet treat for me when I am missing my sweets so much.  This week I plan to make some cauliflower into rice, make carob avocado mousse (as a substitute for chocolate gelato because mmmmmm), and a couple of other interesting recipes.  I will have to do another post soon that is more food focused than health focused, so stay tuned for that.

Getting Worse to Get Better

It is officially the ninth day of me being on my supplement plan.  Things have definitely not been easy.  On Saturday morning I woke up with crazy hives and my bottom lip was swollen.  That is the first time anything has been swollen in awhile, so it made me pretty concerned.  I emailed Dr. Rosinski right away and asked him if it was possible that I could get worse before I get better.  He assured me that it is very common for people to get worse before they get better.  He also mentioned that the increase in B vitamins could be assisting my methylation pathway (yeah I have no idea what that really means either) and thereby see an increase in histamine until it clears correctly.  I popped some more antihistamines and tried to relax, because that’s all I could really do.  Basically ever since Saturday though I have been super hivey and itchy and my nighttime flare ups have been ridiculous.  I haven’t had any more swollen parts since Saturday though, so I guess that is progress.  It definitely freaked me out when it first happened though, because I wasn’t expecting things to get worse.

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Seriously Struggling

Yesterday I was pretty optimistic.  Then again, yesterday was only my first day taking supplements and doing my new eating routine, including the 3 “C”s of eating.  The idea of having this be my life for the next 30 days (at least) is highly depressing.  I would say the absolute worst part are the changes I am having to make surrounding my eating.  I hate gargling before meals and I really hate not having something to do while I am eating.  I have always just ate while doing whatever else without really focusing on my eating and making sure I chew everything thoroughly.  It takes FOREVER for me to chew everything thoroughly.  So long, in fact, that I get bored with it really quick and want to stop eating.

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Adding Supplements

Yesterday I met with Dr. Rosinski again to go over my blood test results and really start to dig in to what I need to do to fix this besides just being on the elimination diet.  I feel like there is so much to remember and I actually was awake super early this morning because I couldn’t fall back asleep due to stress.  All I could think about was all of these new routines I need to add into my day.  It is a bit daunting I have to say, but I do have a lot of faith in Dr. Rosinski and I am willing to do what I need to do in order to get better.  I am tired of being hivey all day every day and having it interfere with my life.

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AIP/Low Histamine Diet

So it seems like it has been forever since I have posted on here.  I have been having a hard time dealing with things emotionally and really just haven’t had much of an update to give, but I guess it is time I get back to writing.

This week I went in to Quest Diagnostics and got what seemed like a ridiculous amount of blood taken for testing for my functional medicine doctor.  I also have started restricting my diet again.  Dr. Rosinski, my functional medicine doctor, wants me to limit my foods to low histamine foods only while also trying to follow an autoimmune paleo diet (AIP).  Essentially, this makes the super strict AIP diet even more strict by eliminating things like bananas and spinach (just two examples that I was particularly disappointed about), which are both high in histamines.  The idea is to limit the amount of histamine I am adding in to my body, since histamine is what causes the hives.  This is also why I have basically been living off of anti-histamines to get by.  I am happy to report that I haven’t taken a steroid in quite some time now though.  I think a couple of weeks.

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February Meal Plan #2

When it started getting toward the end of the second week of February I began to think about planning for the last two weeks of February.  I started to realize that there were some things that I hadn’t gotten a chance to make.  I also had some extra ingredients from my last grocery trip, as well as some things that have been sitting in my freezer or pantry for some time just not being used.  With that in mind, I figured the best way to plan for the last two weeks of February is to look at what I already had in my kitchen and try to plan meals based off of those items.  For instance, I never got a chance to make the 7 pepper salmon, so I just carried that over into the meal plan for the next two weeks.  I also have a LOT of chicken breasts that I thought I would need for the bbq shredded chicken, so I planned to make another batch of bbq shredded chicken and a chicken marsala recipe to use up the chicken breasts.  By using ingredients I already had to plan my meals, I would only have to pick up a few extras to complete the recipes.  This means that my grocery list would be pretty short and I should hopefully save a lot of money.

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Allergy Test Results

The day has finally come!  I feel like I have been waiting to find out if I had allergies that were causing my hives forever now.  I had my appointment with the ENT today to go over the results of my blood allergy test and he walked into the room with a sheet of paper and said, “Well… you were right” as he handed me the paper.  I have no allergies.  NO FREAKING ALLERGIES.  Which means that the hives are being caused by some deeper issue (such as autoimmunity) and also means that both my primary care physician and my thyroid specialist were 100% WRONG in their assumption that allergies were the cause of my hives.  I wish I could see the look on my primary care physician’s face when she gets the results from my ENT and realizes just how wrong she was.

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February Meal Plan #1 (Follow Up)

The hardest thing for me about meal planning and prepping is that I never just have hours to spend in the kitchen, so it is hard for me to get everything that I want to have cooked done in one day.  With that said, I thought you might want an update on some of the other items that were on my list.

I took my first stab at making homemade coconut milk, which was really not fun to make but overall an easy concept.  You essentially just put shredded coconut and boiling water into a blender and blend for a good bit, then strain the coconut milk through cheesecloth.  It is more time consuming than anything and my blender is brand new, so I am a bit wary of putting it through prolonged use.  I made sure to take breaks from blending so that I didn’t overheat the motor or anything.  I used the nut milk bag I had purchased instead of cheesecloth to strain the coconut milk and it worked pretty well.  My biggest disappointment was that even though I used 2 cups of boiling water, somehow it didn’t produce 2 cups of coconut milk.  Maybe I need to squeeze it out more next time, but I thought I had done a good job with that so I am not really sure what happened there.

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February Meal Plan #1

It’s the beginning of a new month and I always love the beginning of each month because I like to treat it much like many people treat the New Year – a chance for a fresh start and to do everything better than you have in the past.  A new month is a whole new opportunity to make your life what you want it to be.

One of my main issues last month was the amount of money I ended up spending on food.  In an effort to reduce my spending and stick to my grocery budget better, I made it a personal goal to meal plan for the whole month of February and really stick to it.  Meal planning makes such a HUGE difference because then you are only buying items that you are sure you need for things that you definitely plan on making.  I am doing this in two parts to make it easier – the first two weeks of the month and the last two.  This way I only have to grocery shop twice in a month and I can just divide my grocery budget by two and that is what I can spend during my first trip.

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