“We Will” (Being sick doesn’t have to be lonely.)

Hi guys,  I know I’ve been awol lately, the past 6 months have been so stressful as Andrew and I prepared for our wedding! The planning, shopping, decorating, paperwork, counseling, and of course $$$$$. AHHH! I didn’t have the time or the energy to even sit down and make a blog post.

We got married on June 2nd, right on lake Ontario in NY. It was a gorgeous day out, which was somewhat of a miracle considering that it rained pretty much every day of weeks leading up to it. We barely even remember the ceremony to be honest, everything was such a blur and the whole wedding went by so fast.

We used a variation of this ceremony and vows – https://hodgepodgepilotswife.wordpress.com/2013/12/18/short-and-sweet-the-perfect-wedding-ceremony-script/

Among other things we changed it from “I do” to “I will” as we both loved the meaning of it, that we aren’t just promising these things in the present, but in the future too.

I was so worried ahead of time about how I would even make it through the day, getting up early to decorate, hair and makeup (I got extensions to go from a pixie to a long updo), and of course the 6 hour wedding itself. Thankfully I was so pumped full of adrenaline it kept me running like caffeine, and I didn’t fully crash till a couple of days later.  I won’t post a ton of pictures, I promise, but just a few.

 

We took our honeymoon down in Myrtle Beach SC.

(For those with POTS considering flying, I will warn you on that on the flight down I felt quite sick and was blacking out during takeoff. It wasn’t nearly so bad on the way back when I made sure to load up on salt and fluids. The descent didn’t bother me much at all either way.)

The trip was wonderful, despite a little rain and us both being exhausted. We can’t wait to go back as soon as we can.

 

I know being chronically ill can be incredibly lonely. Especially if you are home bound like I once was, and someday might be again. Only a year ago I was miserable, I thought no one would ever want to be with someone who is sick like me. I can’t believe how quick my life changed. Andrew and I met in the most random way at a friend’s sister’s grad party, and a year later here we are. God kept His promise and brought me someone who loves me regardless of my changing health.

So for all my sick and lonely girls out there, don’t give up hope! There are still godly guys out there willing to take “in sickness and in health” seriously! It can and does happen, even though i didn’t believe it could.

 

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MCAD?

Its been quite a while I think since my last post, I honestly just couldn’t figure out what to say.

I’m stressed out. My life is a mess. I’m a mess. That probably sums everything up. On top of the usual, its Christmas time… and as all my fellow sickies understand, the “I-have-no-life-I-have-no-friends-I’m-pathetic-and-doomed-to-be-sick-forever” depression is setting in. Watching my old “friends” celebrate through FB is kind of bittersweet. (Ok if I’m being honest, more bitter, and less sweet). But I can’t stop myself from looking through all the pictures, and watching the videos, and reading their conversations about parties, making cookies or gingerbread houses, and decorating the tree. I miss it all so much, and I miss being with them, and obsessively scrolling through FB is about as close as I can get.

But enough whining, I have some interesting news. We suspect that I might have MCAD (or Mast Cell Activation Disorder), which could be causing my Dysautonomia/POTS. My Primary agrees that I certainly fit the description, and that would explain some things…. such as why I’m so incredibly sensitive to my diet, my flushing, rashes on my chest and shoulders, and seemingly random allergy attacks. She said that she would look into it more, and try to find out what the next step would be in getting me tested, and what doctor she should refer me to. In the meantime, I’m doing my best to follow a low histamine diet, and I’m really surprised at how my body reacts to different foods. I’ve know for years that animal products make me feel sick (some more than others), and that I don’t do well with junk food or processed food. I knew that I didn’t do well with soy if I had it frequently, and I knew that I’m sensitive to caffeine and sugar. Beyond that, I just tried to keep my diet as healthy as possible.

One of the reasons I’m so excited about this, is that I’ve tried a low histamine diet before, although it wasn’t on purpose. I never did well on most tube formulas, so whenever possible my dad and I would mix up my feeds at home using ingredients that didn’t make me sick. Once, we even did a raw food diet blending a raw protein/meal powder with fruits and veggies, using cold pressed oils and raw nut or seed butters as a fat source. Sometimes I also drank smoothies and such by mouth if I could handle it. We planned the diet out carefully and checked with my GI doctor who agreed it was nutritionally sound, and was impressed with how much better I looked. It was expensive, time consuming, and inconvenient, but I felt fantastic, and I looked fantastic. We eventually had to stop when my GI problems got worse and I couldn’t handle the thick feeds or the fast rate on the pump, but it completely changed the way I looked at food. I had no idea that a person’s diet could really effect their health that much. Raw foods and the raw food diet is somewhat popular in the MCAD community and with those who follow a low histamine diet. It automatically eliminates many offending foods, (and for those who can eat solids) it can make following a low-H diet a tad less stressful and more convenient.

I’ve also been on high histamine diets, again not on purpose, and I can tell you that I didn’t feel good.

Low Histamine Diet

This is the list I’ve been using as a guide from Mastocytosis Society Canada, and although I don’t think that some of the foods bother me, many of them do. Also “Despite this diet, for our disorders, typically we find that avoiding entirely or at least limiting our intake of wheat, sugar/sweets, dairy, spices, processed foods, and preservatives, resolves many of our difficulties with food. Home Cooking and/or raw natural foods seem to be safest for us.”  And “Some patients have reported great improvement in symptoms and illness level by following a completely raw food diet.” Describe me to a T. (See link above).


Its a long shot, this all might turn out to be a coincidence, and in all likelihood I do not have MCAD.  Its more likely that I just feel my best on a healthy diet, and my body knows what it likes and doesn’t like. And as far as my flushing, rashes, and allergy attacks go, its more likely that I have genuine allergies that we haven’t identified yet. But on the off chance that I do have MCAD, I definitely want to know.

Following a low-H diet is proving to be more of a challenge than I thought. I can eat a little solid food, but most of my diet is still liquid. Most of the”allowed” solid foods are too difficult for me to eat, and most of the liquid things that I used to have like protein shakes, soup, smoothies, babyfood, pudding, jello ect.. are full of ingredients that aren’t allowed. My choices are much more limited now, and sometimes I don’t have any choice but to eat things that I know bother me, or that aren’t allowed. I have an EFA deficiency, and I don’t absorb omega-3 well. I take fish oil and eat about 12oz of fish a week even though it isn’t allowed, because I don’t absorb the alternatives. Most dairy products also aren’t allowed, and even plain, fresh, pasteurized milk bothers me. I’ve had low bone density for years and I don’t seem to be absorbing calcium in supplemental form. And most of the calcium rich foods like greens, nuts, seeds, and beans I can’t eat. There’s a good chance I could absorb calcium better from milk than from supplements, it doesn’t upset my stomach since its liquid, and if helps me avoid broken bones, I think its worth it.

Of course, all of this means daily cheating. I’m trying my best, and feeling better in some small ways, (and much better when I take an antihistamine!) but I’m so frustrated. I feel like I have to “pick my poison.” I have to chose between foods that make me feel sick, or having nutritional deficiencies. Either way I loose.

On a…. more positive note.. I’ve made some progress with my POTS and with running! ❤ I’ve been using the treadmill at the local community center since we don’t have one, and I’ve been able to run 2 miles or more at an incline of 1.5 or 2 before needing walk breaks. On short easy runs (that don’t involve walk breaks) I don’t even need my hr monitor. I just run as far as I can until I begin to feel sick, and I know its time to get off the treadmill. That way on short runs and long runs I can push my limits in two different ways. On short runs I can focus on running as far as I can in one go without being over concerned about my heart rate. On long runs I pay more attention to my heart rate and take walk breaks before my tachycardia gets out of control, that way I can go longer distances without making myself sick. Both should help me to run longer overall distances, and to go longer between walk breaks.

My POTS symptoms themselves are pretty mild. : ) Occasionally I get dizzy or black out when I stand up. And sometimes my heart will race (more than it should) when I go up and down the stairs). But that’s the worst of it, and I typically can stand or walk around as much as I like. (knock on wood).

Anyway.. I hope everyone enjoyed their Christmas, and I hope everyone has a wonderful (or slightly less-crappy) New Year.

Luke 2:11-14 NKJV

11 For there is born to you this day in the city of David a Savior, who is Christ the Lord. 12 And this will be the sign to you: You will find a Babe wrapped in swaddling cloths, lying in a manger.”

13 And suddenly there was with the angel a multitude of the heavenly host praising God and saying:

14 “Glory to God in the highest,
And on earth peace, goodwill toward men!”[c]