“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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Surprise!

Its been a long time since my last post! I’ve been so busy, and so much has happened. As always I mean to sit down and write, but other things take priority, and sometimes blogging just gets tossed to the side.

To start… I met the love of my life last summer!

Andrew and I met in the most random way, (a friend’s sister’s graduation party), and have been together for 5 months now. It honestly feels so much longer. From the moment we met, Andrew and I were instantly comfortable like long lost old friends, and he is definitely the answer to many of my prayers.

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I never thought I would find a guy (christian or otherwise) who wouldn’t be put off by my health problems… but Andrew doesn’t seem phased in the least by my medical history. He takes everything in stride, and is constantly caring for and encouraging me both physically and spiritually. He makes me feel 100% safe and comfortable, even though most men terrify me so much that I struggle to talk and make eye contact. And whats more, he has lived right around the corner from me for years.

I’m simultaneously in awe of God’s planning, and ashamed of my own disbelief. While I admit that I’m still struggling spiritually, seeing God’s faithfulness in bringing us together has changed my perspective alot. ❤

My health has been “manageable-ish” since my last post, but I had an unexpected problem last summer shortly after meeting Andrew. (We had only known each other a couple of weeks at the time, but he handled it like a champ.) Basically… I started have swelling of my throat, tongue, and glands under my jaw. Trigger foods seem to be mostly dairy, red meats, nuts and seeds, chocolate, potatoes, and “junk food” of any kind.

I made an appointment quickly with my allergist who ruled out food allergies, ran some other tests, and concluded it was most likely mast cell related. She added 2 doses of zyrtec to my singulair and claritin, and I also take benadryl if i still manage to wind up with throat swelling. I have epi-pens available too, although thankfully I haven’t had a reaction severe enough to need them yet.

However this has caused a new problem, all those anti-histamines make me feel exhausted. Sometimes I really struggle to get through the day, and eating “high energy” foods for energy (my old stand-by) doesn’t seem to work anymore, instead it just makes me gain weight like crazy lol. Caffeine helps, but as I’ve mentioned before on this blog, caffeine is a nervous system stimulant and can be risky for POTS/Dysautonomia patients. I’ve accidentally had too much in the past and was extremely sick for days following, which makes me nervous about using it, especially on a daily basis.

It doesn’t help that I’m feeling extra pressure to be “functional,” because……. I adopted a horse! Not only does she need care, but I can’t afford to call in sick to work, I need every hour I can get, regardless of how i feel.

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That probably sounds really random to you guys (my handful of readers lol), I haven’t talked much about horses on this blog, but long story short, I’ve been in love with horses my whole life. I grew up riding and always wanted a horse of my own, but pretty much gave up on the idea when I became sick in my teens. I was too sick to even ride, let alone have a job to pay for a horse. I put it out of my mind, and pretty much forbid myself to think about horses while I was sick, it was too painful to think about yet another dream that wasn’t likely to ever happen.

Much to my surprise, my health started getting better a few years ago. I got a job, and have managed to keep it through the relatively mild ups and downs of my health. I started riding again, and decided that I wanted to get serious about having  my own horse. I know in the back of my mind that my health may someday crash, and I could loose my ability to work and therefore own a horse, but I don’t want to take this time for granted either. Right now i have the opportunity to live my dream, and I want to take it, even if it doesn’t last forever. I ended up falling in love with an ex-race horse named Ray, and adopted her from a local rescue, planning to hire the trainers at my barn to help with with re-training her since I don’t have the experience….

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However there have been several hitches to my plan….. first, the barn manager raised his prices dramatically only days after I had her trailed to the farm. Second, she has proved to be much more difficult to work with than my trainers originally thought. (She is hyper-sensitive to her surroundings, spooking at every tiny strange object and noise. She is too busy panicking and is too distracted by her own anxiety to pay attention to me or my trainers.) Third, my med related fatigue lately has been making it extremely hard to get to the barn. She is very sensitive and even the slightest change in her routine upsets her. We are starting to think that she is not a realistic match for me, or our family. Even my trainers are struggling with her and are both surprised, frightened, and frustrated.

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I’m heartbroken, but am considering taking her back to the rescue soon. This just isn’t working. She’s not a bad horse, she wants to please and tries really hard, she’s just too anxious to settle down and pay attention. She’s going to need much more professional training than we can afford, and will need a more consistent rider than I can be when my health goes up and down. Its a hard decision to make, especially around the holidays. 😥

I hope everyone has a good Christmas, and Happy New Year!

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Botox for migraines update 4… and everything else.

Its been almost 2 months since I got my shots, and my migraines are thankfully limited to afternoons and evenings (typically after exercise, chores, or a trip out of the house). This is what I consider “normal” for me, compared to the migraines I was getting before the shots which lasted for days or weeks at a time. Whether this improvement is really from the shots.. or just my symptoms fluctuating like they tend to do.. I really can’t say. (I’m secretly hoping that my migraines have just gotten better on their own so I won’t have to endure 30 painful shots several times a year.) Only time will tell though, and the neurologist said that at some point during the third month the shots should start to wear off and my migraines will get worse again. Assuming that the shots are really doing anything in the first place… I’m getting kind of nervous about June which is quickly approaching. Mostly because I don’t know what to expect. I feel like I’m holding my breath and waiting for the other foot to drop. If it ever does. And I tell myself that I got through it before when my migraines were bad, so I can do it again, its not a big deal. But it is a big deal. Being a useless pile of goo… curled up on the couch in pain for weeks at a time… while I slowly loose whatever sanity I have left… is definitely a big deal.

On that note, the deadline for my online English course is early next month and I’m only about half way done. My teacher said that he understands about my migraines and that I’m not feeling well, and he would give me an extension if I need it. The problem is I don’t have time for any extensions. I have to finish my high school courses before I turn 21, or I won’t be able to graduate. Don’t ask me why. I think its a stupid rule. What about all the losers who drop out of school and manage to go back and graduate at 30 or 40 years old? But I’m sick, I WANT to get better, go to school, go to college, and have a career, and I’m trying my best…. and they give me a deadline “finish by 21 or you can’t finish at all!” How stupid is that? Anyway my 20th birthday is coming up which doesn’t give me a whole lot of time, especially since there is a delay between all of my courses as it takes time for me to be enrolled in a new one, and the online program is difficult to use. (Problems uploading assignments. Programing errors in tests. Extra  assignments that belonged to older versions of the course but were never removed. Even learning games/activities/videos which won’t play on my computer, or I can’t figure out how to use because the directions are useless “press start and play game.” – well duh.)

I do have some good news though, I think I’ve made a little bit more progress with my diet and eating more difficult foods. One of my goals is to go back on the raw food diet again. Only this time eating solid food of course. I think someday I’ll get there. Baby steps. I have a fantasy of someday being able to eat salads loaded with berries, and sprinkled with crushed nuts and honey. I’ve never really been a salad person but I admit that sounds delicious. And having all the fresh smoothies and sorbets I want. And raw deserts which are really clever nut, seed, and legume delivery systems filled with healthy fat and protein. Raw spreads and sauces to put on pasta or dip veggies in. And sprouts of course. Sprouts on everything!

Someday maybe. In the meantime I’ll just keep trying my best to eat healthy within my limitations, and keep working on foods a little at a time.

Although this is totally unrelated, I think I’ve maybe made some progress with my body image too. I’ve always been very self conscious about my weight.. in 9th grade I weighed 125 lbs and thought I was fat. I obsessively counted calories and worked out hard every day, but I didn’t loose a thing. When I got sick I that summer I lost 10 lbs right away (go figure), and at first I really didn’t mind the weight loss. But then I lost some more weight and ever since then I’ve stayed between 100-110 lbs. At 14 when I weighted 125 lbs, people would guess my age and say that I was 18, having big boobs and big hips probably helped. Now that I’m almost 20 people guess my age and think that I’m 14. I’m thin, have no curves, and I don’t pile on the makeup or jewelry like I used to. I’m actually a little frustrated that although my feeding tube is gone and I’m eating again, I’m not really gaining any weight. I checked on the scale yesterday and I’m still hovering at 110.  I’ve decided it would actually be nice if I gained some weight, got my curves back, and looked my real age. That realization kind of shocked me. That despite what the media tells me, being stick thin is not pretty. It was almost a rebellious thought. Screw you society, I WANT to gain weight. I WANT to have curves. I want to look like a woman again. God forbid that “healthy” and “beautiful” could really coexist.

The thing is, I really don’t have any control over my weight. I’ve been stuffing my face for months now, and I still haven’t gained a thing. For example, the three heaping bowls of pasta I ate yesterday, not to mention the raw brownies, protein shake, glass of 2% milk, salmon with dill butter, and pine nuts. I suppose I should be thankful that I have such a flexible metabolism, but I secretly would like to just be normal for once. So maybe I still need to work on being secure no matter what my weight is.. but I think I’ve made a big step. If I gained 10 or even 20 pounds I think I would be ok with that.

To be honest there are some health related things lately I’ve been too afraid to mention in my recent posts (TMI), but I’ve come to realize there is never going to be a good time to mention them, so I might as well get them off my chest. My periods have been irregular. My urine has been cloudy off and on for months, but its not a UTI or bladder infection, or a side effect of any of my meds. My sensitive teeth have been getting so bad that sometimes I can’t eat on the right side of my mouth, forcing me to chew like a cow. I’m worried that my low bone density is getting worse, which I’m also worried is connected to my teeth problems. My primary said that if my next bone scan this fall shows no improvement, then we can look into trying an osteoporosis medication. Which on one hand is reassuring that there are still options I haven’t tried.. but on the other… more shots? more pills? What if my insurance won’t cover it for some reason?  ugh.

Also, my allergist ruled out Mastocytosis, but not MCAD, as there is no practical way to test me for MCAD at the moment. She offered to let me try some other antihistamines, but I’m doing great on the Sigulair and Claritin, and by being careful with my triggers like exercise and diet. She also agreed along with my primary that its possible I could just be having inflammation issues, as it can cause joint pain and allergy symptoms. Exercise can trigger inflammation, and so can lots of foods. The low histamine diet is also very anti-inflammatory which could also explain why I felt good on it, as well as why I feel good on the raw food diet. It would be nice to have answers and know what it is really going on, especially since MCAD/Mastocytosis can cause Dysautonomia. But even if there was a realistic way to test me for MCAD and we knew for sure, my treatment plan would be the same.

Sorry for the randomness of this post… I don’t have the brain power today to string things together in an organized fashion.

 

 

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]