Tuesday, April 26, 2011

freeeeeeeaky.

Last night we put the babies to bed and headed outside to finish up our container garden. Now, I'm not positive the container garden will survive more than a couple of weeks because I have absolutely NO clue what I am doing, but we tried, and that is all that matters, right? The big kids were helping us out, filling the pots with dirt and throwing away the trash... and running off to play soccer and put rocks in their "rock collection" which is really a huge pile of cement "rocks" they have thrown in a garbage can. And come to think of it, I really am not quite sure where that garbage can came from... probably the same place the extra soccer ball that magically appeared in our yard came from... unless my kids are kelptos, which is a very likely possibility.

Anyway, at one point as the sun was setting CB looked up in the sky and SCREAMED, "LOOK! AN ALIEN SPACE SHIP!!!!" and then ran around the yard. And we were like, yes, that's probably right so we didn't pay much attention and then she screamed it again and ran around the yard once more. Once she had run back to the porch near us, M asked her how many aliens were on the space ship and she responded, very matter-of-factly, with, "fifty-one." Yeeeeeah. I'm now 100% sure she is from another world.

Wednesday, April 20, 2011

flow charts and venn diagrams

I need a series of flow charts and diagrams in order to feed my family. Excel Pro or Power Point or something. I  have gotten part of my "diagnosis" from my GI "issues" and am officially allergic to wheat and peanuts, and probably some other stuff, like apples and some veggies, but we don't know what yet. And that kinda really sucks because I'm a big, BIG fan of carbs. Breads, pastas, lots of pasta, noodles, pastries, pasta, cinnamon rolls, pie... all of it are favorites. Did I mention pasta? Yep, love it. And I don't mean that healthy smart pasta either, I mean the wholesome goodness of enriched bleached flour pasta. And bread... again, not whole grain/ multi grain/ bird food bread. I'm talking the kind of bread that is so soft and preserved that you can roll it up into little balls and it will stay that way until you pop it in your mouth.

But alas, there will be no more delicious pasta or bread in my life. And that makes me sad because bread and pasta are the perfect catalyst for pretty much everything. Radishes? Gross. Until you put some Mediterranean yogurt cheese and sea salt on a piece of fresh bread and add the radish to it. Arugula? Disgusting! Until you add some olive oil, shrimp and capers, lemon juice, white wine, artichoke hearts, fresh oregano and parsley with some fresh chopped tomatoes and toss it all with some pasta... AMAZEBALLS. Have some fresh berries and buttermilk and eggs that are about to go bad? Make some French Toast!

Yes, there is rice pasta and wheat free bread but what is the point? The textures are wrong and it just doesn't feel right. And that is really lame for me to say because half of my kids have never even tasted real bread and pasta before. CB just started eating wheat last year. They have to suffice with the "fake" stuff so it should be good enough for me too. But I just can't do it. I don't want to do it.

Feeding my family is difficult enough already and now throwing my allergies into the mix make it even more ridiculous. The only person who can eat "normal" is M. He has no food issues, well, only if there isn't enough hot sauce... then there is a major issue. W can have almost anything but not "raw" dairy, like a glass of milk or regular milk in his cereal. Cooked milk, like cheese and yogurt are ok. But we do have to limit that and the amount of nuts he has. He also doesn't do well at all with processed foods or things that have sugars, preservatives and food dyes in them. So we pretty much keep him on a whole foods diet as much as we can.

CB can have wheat and eggs in moderation and she can have oatmeal too but anything with dairy, soy, beef and nuts are out of the question. She also can't eat apples or pears which eliminates most fruit snacks and juices.

Baby A is officially allergic to soy, barley and grapes (?!?!?) and can't tolerate diary, soy, wheat, oatmeal, eggs, nuts, beef and almost all fruits. Except bananas. Girl loves her bananas.

Baby MJ is not officially allergic to anything but will get a diaper full of blood if she has even a nibble of something with trace dairy, like a McDonald's french fry. She is also extremely symptomatic to everything Baby A is: soy, wheat, nuts, eggs, beef, and pretty much all fruits, but she can have barley and grapes. 

They can do potatoes but we can't just get them french fries while we are out because we can't be sure they aren't made with vegetable oil, which is almost always made from soy beans. We can't just order them a chicken breast without a fuss because most are marinated or brushed with oil or butter while cooking. I can't just give them a cracker or a cookie to snack on and almost all toddler geared "snacks" are made with at least one thing they can't have.

W and CB have been eating Wheat Free/ Dairy Free Fig Newmans for years so I figured they would be ok with A and MJ. But, they are made with barley flour. So MJ gets to eat "two cookies" but A can't. I personally really love the allergen free Enjoy Life Snickerdoodle cookies and ordered a huge box for A, but then I saw they are sweetened with grape juice, so that is out. It is hard to bake anything for them. Most substitutions are not agreeable to them so that really isn't an option either. 

So obviously, all of this poses a problem. If I want to make pancakes in the morning I'll need to make 3 kinds: one regular (flour, eggs, buttermilk and butter) for M and W, one with oat flour and the rest of the ingredients for me and one allergen free one for the babies and CB. Or I could make 4 kinds and make CBs with wheat flour and a diary substitute. And by the time I'm done cooking, Saturday morning cartoons would have given way to Saturday afternoon golf. And yes, I could make one kind but lets face it, the kind that all of us could eat is really not that tasty and is really super expensive to make once you add up all of the ingredients, so I'd rather make 2 cheaper batches and one expensive "half batch" for the girls.

What I need is a huge venn diagram to assist me. One that will fit nicely between W's drawings of Mario and CB's drawings of Frosting Princesses and a "box of wind". It would be a ridiculously lopsided diagram though-- the circle in the middle with what we could all eat would be, by far, the smallest of them all. As it stands now, the only things we can all eat are:

Starches: rice, quinoa (in moderation), potatoes and corn (in moderation and only in "ground up" form)
Meats: chicken, turkey and salmon  
Fruits: bananas and blueberries
Veggies: carrots, sweet potatoes, spinach, kale, peas and green beans

Sounds delicious, right? By Tuesday night, we have exhausted most of our options for meals we can all partake of and then I end up cooking 2 to 3 dinners a night. And that isn't including lunch and breakfast because then we get into the fact that we have 3 kinds of "peanut" butters to choose from: natural peanut, almond and sun butter if we want PB&J and the fact that the babies and I can't have bread so we would eat it on a rice cake... yum. Or if we wanted to have, say, a chicken pasta salad I'd have to make 3 kinds, one with everything for M and W, one with everything CB could eat and then one for me and the babies with rice pasta and cheese and dressing on the side so I could add it later for myself.

And then there's the milk situation. In summery: 1% and Soy for M, 2% for me, Rice milk for W, CB and the babies and then Neocate for the babies also to make sure they are getting enough nutrients. 5 kinds of milk, for 6 people. Consumerism at its finest, I tell you.

I guess I should be thankful I'm still on the "tator tot and milkshake" diet-- at least it makes it so I have one less meal to think about.

Monday, April 11, 2011

minor mental meltdown

I've had the physical meltdown, now I'm fearing I'm experiencing the mental meltdown. I'm tired. And everything is just... jacked. My control freak self has had to give up control of almost everything and in the midst of the chaos, I couldn't, and wouldn't let it bother me. But now that I'm "supposed" to be feeling better it is all starting to drive me a bit batty.

My kids run at 689 MPH. All of them. They never stop and there is always something to be taken care of. And that is the kind of chaos I normally crave. But since I am moving at 3 MPH these days there is no possible way I can keep up. Vortex. Tornado. Whirlpool. Blender. Black hole... Magic Bullet (which by the way is one of the greatest kitchen gadgets ever invented...) That is what I feel like I'm in. Everything is just moving around me while I try to grasp at something, anything, to hold onto.

A few nights ago was a prime example. At approximately 4:37, when dinner should have been cooking and kids should have been playing quietly, hell broke loose. After getting my fourth email in 12 minutes that needed to be answered immediately and dealing with some stuff over the phone I went upstairs to see why A was screaming at MJ and MJ was screaming NOOOOOOOOOOOOO!, only to find that they were just screaming to scream and A had a massive rash all over her torso. And her diaper was a mess. And she was screaming inconsolably, again, as she had done for much of the day.

At the same time CB decided she was going to go ahead and clean herself after using the bathroom, only she did it so thoroughly that she used half a roll of toilet paper. Then W was throwing some kind of fit because I told him he could not do something he REALLY wanted to do and it WASN'T FAIR that I wouldn't let him do it because he WANTED TO and I was a REALLY MEAN MOM. And then little MJ decided she wanted a diaper change too, and to steal her sister's blanket and binkie... and they all wanted to eat RIGHT NOW...

So as I was putting on gloves and fishing wads of soaking wet toilet paper from the toilet I was on the phone with the doctor's office, asking what to do about A, while she wanted to be picked up and was screaming into the phone. And after removing enough toilet paper from the toilet so it would actually flush, I fixed dinner and then squashed an epic battle between brother and sister because sister didn't PRAY BEFORE SHE ATE AND THAT IS NOT OK. YOU ARE ALWAYS SUPPOSED TO PRAY BEFORE YOU EAT. And sister kept insisting she PRAYED IN HER HEAD AND SAID AMEN OUT LOUD but brother kept insisting that was NOT OK because you ONLY PRAY IN YOUR HEAD FOR BREAKFAST AND LUNCH AND YOU PRAY YOUR WHOLE PRAYER OUT LOUD BEFORE DINNER. And how DARE she even take a bite of her food before we all prayed... And between all of that I was trying to get dinner for the MJ Monster and A, who was still crying, while scolding W and asking if he really thought Jesus wanted him to be talking to his sister and mother that way and if he would prefer to have a time out, instead of dinner.

And that is normal life. Any other day it would hardly phase me because it really isn't that bad but I don't have the capacity to deal with it like I should. I don't have the energy or the stamina to be a good mom to 4 very active and inquisitive and adamant children. And I don't have the mental strength to thoughtfully deal with all of the stuff that has been thrown at me in the past month.

I'm so thankful for my health. I know this could be so much worse. I really, really do. And that is why I feel so stupid for feeling run down and sad. But I'm scared of what is to come. If I will ever fully recover. If my body will ever function the way it is supposed to again. If I'm going to have to make some drastic changes to my lifestyle... If I'm going to have to slow down.

I've already slowed down and I hate it. I feel disgusting both mentally and physically. I went from running 15 to 17 miles and strength training 4 to 5 hours a week, to nothing. To literally sitting on my butt for 23 hours a day. And now all I see are large curd cottage cheese thighs and flabby arms. I hate cottage cheese in any form but especially hate it on my thighs. All of my hard work has disappeared and I barely have enough energy to go to the store to pick up a few things. I don't feel strong anymore.

Instead of continuing to drown in an ocean of my tears, I'm going to try to do what those pesky optimists say to do and focus on the good. There is so much good in my life and I really am thankful. I have an amazing husband who has borne so much more of the brunt than he should have had to in the past month... Waking up in the middle of the night with screaming babies, making sure the older 2 were entertained and fed, even taking the babies to the doctor all by himself while still managing to go to work every day and continuing his studies.

I'm thankful for my mom and friend J who were willing to drop everything and come save me with three days notice. Having to learn the schedules and feeding habits of 4 kids who are all allergic to different things and eat at different times, in addition to their sleep schedules, cloth diapers and other daily rituals is hard, hard work. And I'm thankful for my kids who shockingly haven't turned into total buttheads through this whole mess and have coped surprisingly well with all of the changes.

I know it is going to get better. I just want it to be better now. I want to be me again and to have fun and live my life instead of just watching it go by. So I will now go put on my big girl panties, pull up my boot straps and figure out how to make all of this work. And you are totally allowed to tell me to suck it up and shut up because there are plenty of people who have it so much worse than I do... I probably need to hear it.

Thursday, April 7, 2011

cleansed

Six days after my previous visit to the hospital, I started having a weird pain in my gut. I put it in the back of my mind during the morning but as the day wore on, it became more pronounced. By 6 that night I was on google, trying to diagnose myself. Dr.  Google said my appendix was most likely exploding, as the pain was in my lower right abdomen, but I didn't have a fever so I was like, "whatever" and took some pain meds and went to bed. The second the pain meds wore off I was awake and crying. I was nauseous and couldn't move because my gut was hurting so bad.

I woke M and he drove me to the ER while my mom stayed home with the kids. Thank goodness it was before the bars closed so there weren't too many people there. Again my blood pressure was incredibly high and I could hardly answer the triage nurse's questions. They got me back in a room and I tried really hard to be gracious and answer everyone's questions. A resident had pulled the short straw and got to come ask me all of the same questions the triage nurse and ER nurse had already asked me.  I finally pretty much snapped and told her to READ MY FREAKING CHART because there was NO possible way I was pregnant, this was NOT a miscarriage. And then M took over the question answering duties. Then the resident had to consult with the doctor before they would finally give me anything for the pain. At that point, I was literally on my hands and knees, gripping the head of the bed and grunting like I was in labor, but it was worse than labor because the pain NEVER STOPPED.

The nurse, bless her, finally came in with a serious cocktail of zofran and 2 other amazing medications to take away the pain. Then she made me drink a delicious grapey concoction of contrast solution and sent me off to get a CT scan. CT scans normally suck but this one was awesome. Why? Because it talked and I was so drugged that I really thought it was talking to me. And then, through some mechanical arm, it inserted the contrast solution into my IV and I freaking thought I had been abducted by aliens, or something. I wasn't sure at all what the crap was going on but didn't really care because I felt like I was at Disneyland with all of the meds they had me on.

Sometime later the doctor came back and told me my appendix was fine. And I was like, dude, go back to school because there is NO WAY my appendix is fine. THIS HURTS. And even if it is fine, take it out anyway-- I DON'T WANT IT ANYMORE. And while you're at it, take my tonsils too because I don't want those, either. I wasn't exactly rational... but my appendix was, in fact, fine and not inflamed. However, parts of my colon and intestines were thick and "very inflamed" and that was what was causing the pain. Oh, and they also saw several hematomas on my liver. But that wasn't really a big deal and were normally caused by blunt force like being kicked or a stab wound and may go away later. Oh yeah, don't worry about those... they are probably just from when I got into a shank fight after roller derby a couple of weeks ago. Geeze.

So again, I was sent home, armed with pain meds and told to wait out the pain until I would get a colonoscopy done early the next week. While I was waiting that to get the colonoscopy done I couldn't keep anything I ate in. Well, I should say that I couldn't keep any normal food down. The only things I could stomach were potatoes and milkshakes, and I don't even like milkshakes. So for the better part of a week M would stop by Sonic on his way home from work to get me my daily meal of tator tots and a cherry limeade freeze. When I would try to eat real food I'd get sick. And then I realized that I was really getting sick from wheat. Every single time I ate wheat I would get a headache and that stupid abdominal pain again.

I have been asking my primary care doctor for allergy testing since November because I thought it was causing my eczema and he always refused because he insisted that allergies don't cause eczema. I have also been having daily headaches and that side pain, on a much lesser level, since around November. One of the reasons I went to the GYN in the first place was because I thought that pain was from my ovaries, which they ruled out through ultrasound. I had changed doctors and asked my new doctor for allergy testing, but she, having actually graduated in the same class as med school as my previous doctor, also insisted that I didn't need allergy testing because allergies don't cause eczema... yeah, ok... (I have since changed primary doctors AGAIN and will be asking for more comprehensive testing at my next appointment.)

The GI doctor thought I was probably suffering from a Crohn's flare up, although there is absolutely no history of Crohn's in our family and I have no history of flare ups nearly this bad. They also mentioned various types of colitis and cancer. I personally thought my body was just jacked from all of the toxins I had put in it the previous 2 weeks. I had even said that I wanted to detox from all of the pain meds because I just felt gross, but I didn't exactly want to do that kind of detox. I would have much rather drank some tea and ate some leafy greens. Not not eat for 36 hours and drink some salt solution that tasted like the worst over salted margarita EVER. I could hardly get that nasty stuff down. I did everything you aren't supposed to do and put a ton of ice in it and started chasing it with jello because that was the only way I could kind of get it down. I figured, heck, they give me the same amount as they give to a 250 pound man, so I shouldn't have to drink all of it to make it work, right? And oh my goodness did that stuff ever work. It worked so well that I was detoxed, cleansed AND sanctified.

The day of the colonoscopy we went and checked in. It had been over 36 hours since I had been allowed to have my precious tots and milkshake and I was huuuuuuuuungry and weak. I finally got to see the GI doctor and told him what had been going on and he was like, "Well, hey, I think we should go ahead and do an endoscopy too!" Oh REALLY!! Fun!! My esophagus was feeling left out. I've had things stuck in every other orifice, why not just bat for the cycle?

So after some confusion about the lab losing the pregnancy test I had to take 2 days before (mandatory, even though there was absolutely NO possible way I was pregnant) I signed a waiver saying I wouldn't sue if my imaginary baby was born with 3 arms and a missing toe and they wheeled me back to begin the tests. They both went flawlessly and I was able to take an awesome nap. When the nurse started waking me up I begged her to let me sleep for just 20 more minutes. She said no and shoved an orange Popsicle in my mouth. I don't like orange, I like red.

The GI doc didn't see any sign of Crohn's or cancer but he did biopsy a couple of areas. Now we are doing some blood tests and waiting on all of the results. I hope to have a "plan" soon. At least some kind of diagnosis so I know what direction to take and we can keep all of this from happening again. Food is still not my friend. I can stomach small amounts of some foods, but nothing is tasting or feeling good to me. I wanted to lose some weight before summer but losing it this way is just stupid.

Tuesday, April 5, 2011

"simple and routine"

It is hard to believe it has only been three weeks since my surgery. Some days it feels like it has been months. I've debated long and hard whether or not to share what happened and have decided to because so many people have asked. While nothing life threatening or major happened, it was still  painful and intense and rocked my world in ways I wasn't sure my world could ever be rocked.

The good news is that I don't have cancer! I DO NOT HAVE CANCER! And that is a huge, huge relief. Even though the chances of me having caner were quite small, there was still a chance. The bad news is... well, things didn't exactly go as according to plan...

The morning of the surgery the anesthesiologist and I decided it would be best to just sedate me and use a local anesthetic instead of putting me completely under, which made me feel a lot better. They did say that if they couldn't sedate me enough they'd have to put me a under, but he was pretty sure that wouldn't happen. Well, that did happen, and they ended up putting me completely under. Then they ended up taking 2 cm of the cervix, instead of 1/2 cm like they said they would. 2 cm is roughly half the cervix. And because of that, there was more bleeding than there was supposed to be, so they had to use sutures and cauterization, instead of just cauterization.

I was only supposed to be in recovery for about an hour, and then I'd be able to go home, except I finally started to come out of the anesthesia about 3 hours after the surgery had started. And when I did, I was in a tremendous amount of pain. I was shaking and moving around the bed but not able to form my words to tell them I was in pain. The nurse thought I was cold, so she gave me a blanket. M came in the recovery area and saw me and knew that was my reaction to pain so he insisted that they give me pain meds; the nurse insisted I was just cold and gave me another blanket. He insisted again, and she asked me what my pain level was. When I told her it was a 6, M replied with, "Her 6 is your 12, give her some drugs". They did, and I promptly had an allergic reaction to them. So they gave me more drugs to reverse the drugs and then gave me some more drugs for the pain. But I was still in pain. Lots of it.

I felt burning and told them, they thought it was from the allergic reaction I had to the pain meds. But it wasn't. This was a horrible different pain but I was too drugged to convey what I was feeling and what I meant. They gave me more morphine and my will to care decreased dramatically and I decided, stupidly, that the pain would go away soon and I'd just go home and tough it out. After routinely popping a vicodin and 800mg motrin every 6 hours until the next day I knew something was definitely wrong and called to ask for a prescription for stronger meds. The doc said no, as he rarely even prescribes motrin for this kind of recovery and told me to come in, because something was definitely not right.

My mom drove me back to the hospital and I slowly made my way to the GYN clinic. I could barely walk and contemplated stealing a walker from an old lady but decided that wouldn't be a good choice. When I got to reception they saw my face and took me directly to a room. My BP was through the roof and I was hurting worse than I ever had before. The doc came in, asked if he could do an internal, took one look at me, turned green and ran out of the room yelling for the head RN and 2 other doctors to get in the room now. They insisted I take some pain meds immediately and then they all proceeded to examine me like I was a medical anomaly.

It turns out that I was not slightly psychotic when I was in recovery screaming in pain. That burning I felt was, in fact, burning and I had suffered from an extremely rare and incredibly painful complication during the surgery. I had an allergic reaction to the surgical prep solution and it caused second and third degree chemical burns everywhere they had used it. Using your awesome powers of deduction, you can figure out where it burned me, given what kind of surgery I had. It hurt. It hurt so bad that I would have so much rather had gone through all 3 labors and 4 births of my kids again, without any pain meds, again.

None of the doctors in the room had ever seen this before. They had only come across it briefly in medical books and only one had actually heard of it through a second hand story from med school about this type of reaction. They didn't exactly know what to do so they left the room and consulted their colleagues, Dr. Web, MD and Dr. Google dot Com. (I'm sure they didn't google, but I know they had to go looking for the solution to my problem.) And because it was my luck, there was nothing they could really do, except medicate me and wait for everything to heal. It wasn't like they could skin graft the area... We all made the decision that it was probably safer for me to go home and be on bedrest than to stay in the hospital. The risk of getting an infection at home was so much less than getting an infection if I stayed in the hospital.

So I went home, armed with vicodin and expecting to just sleep for the next week. I was under strict instructions to take my 1000mg of vicodin every 6 hours, along with my 800mg of motrin and not to lift anything heavier than 10 pounds or to drive, use a credit card or make any kind of important decisions. And then we would just deal with the liver problems at a later date.

I was pretty good about staying in bed. Restless, but too weak and in pain to really get up and do anything. After the second day of pumping myself full of drugs, I was still in just as much pain as I had been before, and I didn't feel good at all. So we made the decision to go to the ER. I was freaked about going there. Could you imagine the look the triage nurse would have given me when I told her what the problem was? "Um, yeah, my hoo-ha is completely burned and I need some pain meds." I'm 99.8% sure she would have excused herself right there and called the cops and social services.

Thankfully, my doc happened to be on call up in Labor and Delivery so after a call to him he told us to just come straight to L&D and he would take care of me there. By the time we got there I was in so much pain I was shaking again. They immediately got to work letting the nurse in training start my IV. And lets just say that didn't go so well, for anyone. After she blew a vein and I promptly proceeded to pass out, she passed off the IV starting duties to another nurse, who blew 2 more of my veins. After M almost decked her and as I was sobbing hysterically (honestly, my pain was at least a 10 out of 10. I was begging to just go home... I couldn't do it anymore) they admitted defeat and called the anesthesiologist in. He shot me up with some lidocaine and put the IV in on the first try and then gave me a fantastic cocktail of morphine and benedryl and I slipped off into night night land.

While I was all, "duuuuuuuuuh", my doctor and his colleague went in and removed all of the dead skin and surgical packing. And even through all of the morphine it still hurt but I felt almost instantly better with everything out of me. Then they admitted me to the surgical unit, sedated me and let me sleep for the better part of the next 15 hours. Again, because the risk of infection was great, I went home the next day to try to heal and rest. Things were going pretty well after that. I even managed to take the babies (my mom drove) to their GI appointment an hour and a half away.

And then less than a week later, I was in pain, again. But this was a different type of pain. A new pain... one that was actually worse... and the fun began again. 

(continued soon, because I KNOW you all love hearing about my body ;) )