All About Me

My lovely, lovely friend Mrs We3three tagged me in a meme and I thought, why not?! It gives me a reason to blog, reasons being a little thin on the ground for me lately. I’ve left the British spellings on things because it tickles me to see it. Apparently this meme started with Cold Tea & Smelly Nappies (which sounds like two very unappetizing things together) so please address any issues there.

1) First off tell us your name and what you do… I blog under my real first name, Molly, and it is fairly easy to find out/know the rest of my name due to publication. But for the sake of trying to remain somewhat anonymous lets leave it at Molly. I work in Cancer Care at the moment and love working in medicine with patients, even if I do get sad a lot.

2) I live at home with… Mr. MM and our two cats Zuzu and Fat Boy Sal.

4) My favourite thing to eat is… Chocolate. All day every day. I love a lot of specific foods and dishes but chocolate is definitely top of the list. Mattar paneer is probably second beneath that.

5) When I get cross I… uncross. LOL, a lil’ British v. American humor *kneeslap*. Actually when I get “cross” I swear, much more than I should obviously, but it makes me feel better. Most of my swearing is on Twitter, so all of my Twitter friends most likely believe that I am a foul-mouthed broad liable to peel the paint off of very walls with my language. In reality I only swear when I am alone (generally while driving), on Twitter, or with Mr. MM. I swore the other day at work (while on break and well-away from any patients) and my coworkers were completely taken off guard because they didn’t think I swore. LOL. If only they knew.

6) Sometimes I worry because… bad things happen all the time and they generally always happen to me. Of course this isn’t true but my brain doesn’t know that half the time.

7) My favourite book is… 80% of the books written by Mercedes Lackey. Mark me as a nerd as you may, I love the Valdemar series, the 500 Kingdoms series, and the Elemental Masters series.

8) My favourite toy is (easy now)… my nook. I’m not sure I mentioned that I love to read. Honestly this is one of the best things anyone has ever gotten me. (Thank you hobi!)

9) I dislike… large groups, arachnids, cleaning, rude/annoying people, politics, lies (hence my dislike of politics), and injustice.

10) When I grow up I want to be… someone who has done something good in the world. Honestly. I’m happiest when I know that something I’ve done has directly benefited someone else, especially when it makes them happy. For a misanthropist I am remarkably affected by the happiness of other people.

I’m not going to tag anyone because I don’t know if anyone even reads my blog anymore. But I want you, yes YOU, to take this and do it on your blog and then tag me so I will know that people still actually do read me.

An Idea of Home

The more, and further, that I have gone from home the more I’ve realized exactly what home means for me; what being “Minnesotan” means for me, what being “Minnesotan” actually means, and how that has shaped me.

Until I left to finish my studies at Arizona State University I had always lived in the Upper Midwest. I was born in Minnesota, moved to Wisconsin at 10 (but went back to MN every summer), and then moved back to Minnesota at 15. While a rivalry does exist between the states, major differences in culture really do not. Maybe Wisconsin’s a little more Polish Catholic and Minnesota is a little more Norwegian Lutheran, but mostly they are the same mix of stoic Scandahoovians who’d give you the shirt off their backs but never they key to their emotions.

I truly do not think the culture that exists here is that far removed from the culture that exists in today’s Northern Europe, at least not from what I’ve seen both being there or on TV/in movies. We don’t ask questions, we accept the differences between people (at least outwardly- even if it makes us intensely uncomfortable), and we would rather set ourselves on fire than openly tell someone that we think they are a backwards heathen that will surely burn in hell- even if we actually believe it. Even among families negative emotions are not shared except between those who are closest to you. For me it is easier to cry when I am alone than it is to cry even in front of my husband (which is purely my quirk as my husband is the sweetest shoulder to cry on in the history of shoulders to cry on,) and I haven’t had a fight with any member of my family since the last time my cousin and I fought over dolls in elementary school. Dr. Phil could devote an entire year to all of the problems and messed-up dynamics that exist in my extended family but no one talks about any of them. Ever. Maybe it’s not entirely healthy but we love each other and we would rather forget that there was/is a problem than cause a rift or strife.

It is comfortable for me, but not so comfortable for Mr. MM who can never tell whether members of my family are happy, sad, excited, or angry and therefor, conversely, upset with him about anything. He’s not sure how to deal with that as, for him in his culture, there are a million nuances to read from Egyptians based on a million more body-language cues that direct how all social interactions go. Interacting then with my family is like trying to read a book filled with blank pages. Thank God my mother is more effusive, and from her I am as well, compared to the more stoic members of my family.

But, when I was younger I was drawn to the passionate interactions of Hispanic culture; I sought the intense interpersonal relationships and dynamics of immigrant friends. I embraced my Mexican friends, my Desi “adopted family”, and my loud Arab in-laws. Everything was brighter, louder, and more filled with color. I loved it.

But now, as I get older, it kind of exhausts me. I love the quiet, the silence, the lack of drama that I find with my Upper Midwestern friends and family. Of course I still adore my Egyptian family and the vibrant Muslim community, but I find myself craving peace and quiet. And I just CAN’T with drama. Nope.

And as I have embraced that quiet, Scandinavian part of myself I’ve thought back to my childhood and how much a part of me this culture is. And I have come to treasure it.

Especially now, in the fall. Something about the falling leaves, the crisp air, and the gradual approach of winter seems so very Minnesotan to me. I read an article online that said that Denmark has an actual word for the warm, fuzzy, cozy nostalgic feeling that you get and is attached to fall and winter: hygge.

When I was younger I wanted to leave behind the Scandinavian part of me because I was bored by it. Bored by the simplicity and the quiet, the sameness. And so I traveled, I cultured, I explored.

Now I’m older. And I like the quiet again. And I hope that no matter where I ultimately end up in the world, that I can still impart into my children the concept and love of hygge.

Making Your Own Gluten-free Flour Mix

Because Mr. MM is also intolerant of rice, I am unable to use most of the GF AP (all-purpose) flour mixes for sale, so instead I needed to make my own. I had always thought that you could just buy a gluten-free flour and bake with it, adding zanthan gum to hold it together. I had no idea what went into flour mixes.

This blog-post, and a million thanks for Gluten-Free-Girl for making it, opened my eyes and gave me the base upon which to start making my own mixes.

I won’t re-invent the wheel; go read that blog and watch the video (she’s adorable) to see the reasoning behind the mixes.

My personal mix is:

2 cups (400 grams) teff flour
2 cups (400 grams) sorghum flour
3 cups (600 grams) potato starch
3 cups (600 grams) tapioca flour

I like the weight that the teff flour adds to the mix, but be careful if what you want is a fine bakers flour. For those who don’t know what teff is, it is used to make the heavy Ethiopian bread called injera. The next time I may leave it out and try another whole-grain flour, but the other three I believe are going to be staples for me.

As gluten-free-girl says in the video, play with it. Each flour adds it’s own flavor to the mix so use what you like. When I finally try making my own bread, I will most certainly use teff flour, but when I ever want to try making a light pastry, I may not want to use teff. Then again there was teff in the ghoreiba and those came out light as a cloud.

But this is what my mix is. If you’ve made your own before, please leave me comments with advice or recommendations!

Gluten-Free Ghoreiba

Ghoreiba is basically a Middle-eastern butter-cookie decorated with almonds. I’ve never made shortbread cookies, but ghoreiba reminds me of a mix between them and Russian tea-cookies. A quick google search later and now I know that all three of the above cookies are basically the same cookie made in different ways.

When I made ghoreiba with gluten flour my cookies came out dense and buttery, very good but somewhat heavy. Something that really surprised me is that this time, using my gluten-free flour mix, the cookies came out super light and flaky. They basically crumbled and melted in your mouth. The texture change threw me but, as has happened with most of the recipes I’ve tried, I actually liked the cookies better gluten-free than with gluten.

Sometime soon, later this week most likely, I will blog about the gluten-free all-purpose mix I made and link it on here and all my future recipes.

HERE IT IS!! 

But for now, here is the recipe for gluten-free ghoreiba.

This recipe was given to me by my Egyptian mother-in-law. Many people have their own version of ghoreiba and add things like rose water, or orange blossom water, but this is the very basic version. Mama (my mother-in-law) makes her own variations on this by adding cocoa powder for chocolate ghoreiba.

Gluten Free Ghoreiba

1 cup powdered sugar
1 cup butter
2 cups gluten free all-purpose flour
1 tsp vanilla (1.5 tsp if you’re using powdered vanilla)
Whole blanched almonds to garnish

Pre-heat your oven to 350 degrees.

If you don’t have a mixer then get ready to work out your biceps because the KEY, absolute key, to fluffy ghoreiba is creaming your butter and sugar together until it’s light and fluffy. I have a much-beloved kitchenaid and I highly recommend getting one for anyone who is even slightly interested in baking. It makes all the difference.

Cream your room-temperature butter with the powdered sugar and vanilla until the texture is fluffy and the color has lightened. Mix in your flour until the dough comes together in a ball and pulls away from the sides of the bowl. I had to add a few teaspoons of additional flour until the dough would pull away. Test it, if you need to add, add lightly until the dough pulls together. You want it to make balls without sticking to your hands.

Once it pulls away from the sides of the mixing bowl stop mixing it, you don’t want to over-mix the dough.

I bake the cookies on parchment paper and I feel this crisps up the cookies better than baking directly on the cookie-sheet.

Take enough dough in your palm to make a gumball-sized ball. One of my initial mistakes was making the cookies too big which made them heavy and doughy. Roll the dough between your palms until it makes a perfectly round ball and then, after placing the dough ball on the parchment, press your thumb into the middle, smooshing the cookie down and leaving a perfect thumb-print. Into this thumb-print you will press one whole almond.

The cookies will spread out so make sure you have at least two inches between each cookie. Bake the cookies for 12 minutes at 350 degrees. With the GF flour I found that my ghoreiba didn’t really brown like I’m used to, so I over-cooked the first batch. Thankfully the recipe is very forgiving and the cookies were still good, if a little too brown on the bottoms.

I made a few variations in this batch: I started with basic ghoreiba and then for the second round I rolled the ghoreiba balls in shredded, unsweetened, desiccated coconut and baked them without an almond (because I may or may not have forgotten to add the almonds), and for the third round I rolled the balls in coconut again and then added the almonds.

I think next time I may try adding cocoa powder to the mix and make chocolate ghoreiba, and sometime in the future I may try adding jelly to the thumb-prints and make thumb-print cookies. Another version Mama has done in the past is putting jelly between two mini-button ghoreiba she made (without thumb-print) and then edging the sandwiched ghoreiba-buttons in more jelly and then rolling that in shredded coconut. Those were very good and very pretty.

This ghoreiba recipe is a very good base upon which you could jump off into many directions. AND if you are not gluten-free, simply use regular all-purpose flour. The recipe stays the same.

Dreams

Last night I dreamt about two of my grandfathers; it was a sweet dream. It was sunny out, the golden kind of sunny where everything glows. They were both hale, healthy and strong and they were carrying heavy things for me. They were joking and laughing and when I ran over to them they both smiled at me. I kissed them each on their cheeks and told them that I loved them and then I ran on.

 

I don’t remember where I was running to or what else was in the dream, but I have the feeling that I will carry this memory forever, cherishing the moment, real though it may not be, because of the perfection of it and the realness of the love, given and taken, between them and myself.

 

They are both still alive, thank God, although not quite as robust as they were in my dream, and I look forward to the next time I get to kiss them and tell them how very much I love them. I may even remember the dream when I do so.

Completely Re-Learning How to Cook and Other Adventures

For years Mr. MM had dealt with crippling stomach issues that often left him curled up on the floor in pain. As you can imagine this was extremely distressing for me; I couldn’t bear to see him hurt but didn’t know how to fix it. Being the only one who knows how to cook chef of the family I had formed a somewhat tenuous link in my head between what foods I cooked and his resulting stomach pains so I consulted Dr. Google and what I found there matched what I was already thinking. I believed that he was gluten-intolerant as anything involving bread or pasta left him in pain almost immediately however I was thrown off because it seemed that rice did the same thing. But rice is gluten-free so I was hesitant and confused. It also didn’t help that Egyptian food is built on a three-fold foundation: rice, bread, and pasta, and as such Mr. MM had never gone without eating one of those three for more than a day, if that. I was at a loss and Mr. MM himself was no real help in that every time I brought up the idea that he stop eating them he balked, add into that the fact that I had no idea what I would feed him and that meant that he continued to suffer while I dithered. *sigh* 

Finally it got to the point that I could no longer handle watching him in pain and he could no longer handle being in pain and we made an appointment with a gastroenterologist. As usual there wasn’t a GI doctor appointment to be had sooner than two months out, but we plugged along while I began serious research into what I would do if he did, in fact, turn out to be gluten-intolerant. I read, I researched, and then I did what I had never really done before: I planned out weekly menus.

Armed with this, and a test-run with quinoa that turned out much better than I expected, I approached Mr. MM with the suggestion that while we wait for the GI appointment we put him on an elimination diet. It took a bit of persuasion, me pointing out that the GI doc is going to suggest it anyway, and a promise that it would only be for two weeks, and he finally agreed.

Two weeks, and many new dishes later, Mr. MM was feeling great, while I was a bit kitchen-burnt-out. But whatevs, stomach-pain GONE. The next day after the Great Elimination Diet of 2012, Mr. MM had himself a sandwich and was curled up in pain after a few hours. A few more days without gluten or rice and he was fine again, and then a dish with rice and the same pain began.

My poor husband is not only gluten-intolerant but he is also rice-intolerant. I honestly can’t imagine anything worse for an Egyptian trying to eat Egyptian food than this. Our appointment with the GI brought the same diagnosis, especially as there really isn’t any way to test for gluten-intolerance other than an elimination diet. We could test for Celiac’s, but I don’t believe he has that, and we could test for a gluten allergy except he doesn’t exhibit any allergic reactions like hives, itchy anything, or swelling.

So, poor Mr. MM. And poor me!; poor, poor me. Because almost every gluten-free substitute for sale in the market uses rice flour as its base. So buying gf bread is out of the question, gf cookies almost as hard, and definitely no gf brownies or gf cake mix.

What’s a girl to do?

This last week I finally took the bull by the horns and mixed up my own gluten-free all-purpose flour mix and began baking with it, but that’s a story for another post later.

For now I can say that we are eating really healthy and I am very happy about it. I don’t think I’d go back to cooking rice and eating bread now, even if we could. Post gastric-bypass I shouldn’t be eating rice, bread, or pasta anyways so not keeping it around the house isn’t hard. I’ve had to become a little adventurous in my cooking, yes, but it keeps things interesting. And thank God – seriously alhumdulillah – for quinoa because having that as an option has made all the difference. I can still make most Egyptian main dishes, simply using quinoa instead of rice, so not too much has changed.

I have to say though that molokhia over quinoa really isn’t the same. *sigh*

Still, we both feel healthier and happier, and I’ve been looking into ways to further clean up our food through reading my friend Rehaam’s blog Steak and Sass.

Now, she’s gone Paleo and that’s a bit lot further than I care to go, but some of the principles of cleaning up what we eat make sense, especially working in Cancer Care, as I do.

I’m going to start blogging some recipes in the future as I can’t imagine that Mr. MM and I are the only Muslims and Arabs dealing with how to cook ethnic gluten-free food.

Maybe I can help a sister/brother out.

And if you, or someone you know, is dealing with gluten-intolerance AND rice-intolerance let me know in the comments. I feel like there are many more people dealing with that than just us.

Giving blogging another go ’round

Hello friends, I’m sorry I’ve been away but frankly my life has been a little boring, and the good bits (the interesting ones at least) were not things I felt prudent to put online. I guess that as I have gotten older I’ve become wiser about the information I put out for public consumption, especially now that I am (somewhat) more widely known than before. Not that I got famous by being published or anything; no big sunglasses and floppy hats to hide from the paparazzi. But I found my need to be heard and validated fulfilled by twitter where I can rant to my heart’s content and have it be seen by only those I want it to. My twitter is locked down and I am very specific about who I let in so it is the perfect mixture between private and public. I’ve missed you though, blogging friends, so I’m going to try again to get back in the saddle and write.

To catch you up on the specifics: Mr. MM and I are still in Minnesota. Mr. MM is currently a 2L law student and I am working with cancer patients. I didn’t get into the MFA program, which has actually turned out to be alright, but I may go back to school in the future for something else. Right now I’m just focusing on working, playing, and writing.

I hadn’t been writing as much as I used to and I think that my lack of desire to blog was tied up in the reasons for that. However, I’ve recently begun writing again, thanks to some workshops through Mizna (check them out, they are amazing) and the reawakening of my need to express myself- a need that 140 characters cannot begin to fill.

Last year, 2012, was an intense year that exhausts me when I think about it. Let’s just say that I was glad to welcome 2013 when it came, even if it does mean I’m going to be turning 30 in a month!

I can’t promise to blog daily, my work schedule may not always allow for that. But I do promise to start blogging more. How about that? Sound Good?

Ok.

Five Weeks Down – The Rest of My Life To Go

Anyone who says that gastric-bypass is the ‘easy way out’ has never actually known anyone who went through it. It’s been tough, especially the first three weeks between the liquid-only diet, hardest thing I have ever done hands down, and the oral thrush I caught and dealt with, I was all sorts of miserable.

The incision pain was, thanks be to God, very brief. I had surgery on Wednesday and was off pain meds by Sunday, but I would liken it to having done a hundred sit ups in 10 minutes without having ever done sit ups before in your life. I would have to have my husband literally lift me up out of chairs by my hands because I couldn’t make my stomach muscles engage my core enough to do it on my own.

Probably, the worst, most traumatizing experience came three days post-op. I had tried to switch from the liquid percoset to liquid children’s tylenol without knowing that they throw a whole lot of sugar into that crap to make it palatable for ill three-year-olds. It was too much sugar and I, having never experienced dumping syndrome in first hand, didn’t realize it. Very quickly afterward I was  uncontrollably and violently dry-heaving, having not even the faintest idea why, and in excruciating pain from my incisions with every heave. It was painful and I attempted to combat it with a dose of the percoset. Finally the dry-heaving subsided only to leave me drugged out and asleep for the messy aftermath of phase-two dumping syndrome. I won’t get into fine, and gory, detail but it left me in a very slimy and unpleasant situation.

*Sigh*, yes I went there. I wasn’t sure if I should but I want this to be a very up front discussion of what people face after this surgery.

I have been very lucky though, and very, very diligent about chewing my food to a pasty consistency, in that I have not – yet – dealt with any vomiting at all. I would truly say that this is because I am extremely careful about chewing and taking small bites. If you are thinking about this surgery, this is something that is so huge and important.

I have, however, encountered the pain of eating too much/too quickly. I would liken it to someone punching you in the diaphragm from the inside and then also pinching you in the intestine. It is unpleasant to say the least.

And due to my severe PTSD-like anxiety after that one dumping episode, I have eaten very little by way of sweets, and when I do eat sweets I take the tiniest of bites. People- there are 6 boxes of my favorite girl scout cookies sitting in the closet behind me and I haven’t opened a single one. A SINGLE ONE. That’s how terrified I am of dumping again. Aversion therapy, it works.

But the pluses are worth it. I feel so good. The last weight I took was 30 pounds lost since surgery. I believe that it has been more, as I haven’t weighed myself for a week or two, but it’s amazing. My body feels light and fluid, My energy- despite the tiny amount of food I take in every day – is high, and I already have lost a significant amount of the back and knee pain I was dealing with before the surgery. Alhumdulillah.

I made the mistake of getting over excited and trying to kneel down on the floor for prayer – omg ow – it’s still a little too early for that apparently. Felt like someone was nailing my kneecap to the carpet. But at least I didn’t feel like I was putting my back out getting up again so, you know, baby steps.

My clothes hang on me. Obviously this is a good thing, from a hijab standpoint and from a weight-loss standpoint, but it’s not such a good thing when I’m walking and my long skirt falls down enough for me to step on it and faceplant. Have I ever mentioned how graceful I am?

This soon after surgery I have stuck very closely to guidelines and not tried to get too far out into the food categories. It has been mostly basic proteins and some veggies for me. Tater tots didn’t go down so well, but at least they stayed down. Refried beans – vegetarian and healthy version of course – have been my friends, hamburger has oddly not – even though I have eaten a lot of it, it being a very easy protein to cook with. When you have to chew food as thoroughly as post-gastric patients do, you find quickly that hamburger is less meat and more un-chewable tendon than you previously had realized. And you begin to consider buying your own meat grinder in order to make sure that your meat is consumable even though you work a lot and come home very exhausted and having to grind your own meat would take forever it’s just that you’re tired of chewing for hours and having to still spit bits out like a cowboy with his spittoon. Y’know what I mean?

But, I spend a lot less money on food now. I can buy a lunch at work and have enough for two more days of lunch at work. It’s the little things.

My next few culinary adventures will probably involve trying hummus and fo’ul again. Beans are good protein, ya’ll.

If you guys have any questions about my experience so far, please ask me in the comments. I am going to set them up as needing moderation before they post publicly so if you feel your question is too personal for me to post it, let me know in the comment and give me your email and I will try to answer you directly.

Please be patient with me. We’ve had a lot of medical ordeals in our household recently, and along with work and daily life, I don’t find as much time for responding to emails and writing blogposts as I used to.

Now I’m going to get back to finishing my liter of water (flavored with Mio orange tangerine- it’s like Fanta without the natural sugar and fizz!). You’d be surprised at how freaking hard it is to drink 2 liters a day when you can’t chug.

I miss chugging- possibly more than girl scout cookies. I probably need counseling.

A Life-changing Decision

Today is one day before my surgery, but I will not be posting this until everything is said and done.

This surgery is a touchy topic no matter who you talk with, or their opinion on it. It touches on issues that vary from vanity, to shame, to health, to laziness, death and disease. It is misunderstood and the people who chose to have it done are misunderstood and continue to face misunderstanding before and after the fact. What makes me sad is that, in general, breast implants/other manners of plastic surgery are more socially acceptable than the surgery I am having and I don’t know what that says about us as a people.

I remember I was 6 or 7 years old and my cousin was sleeping over but she hadn’t brought a swimsuit for us to go swimming. So my mother took one of my old ones, a cute bikini that I had recently become too fat to wear, and gave it to her to use and I had a fit. I didn’t understand why I couldn’t wear the cute one, and instead had to wear an ugly one-piece. Oh, what an analogy for how life would be for me from then on.

At 8 or 9 my mother tried to enroll me in dance lessons to try to get me to be more active than I was, possibly to curb how fleshy I was becoming. Unfortunately as a young child with club feet and the beginnings of fibromyalgia, dancing was painful and I hated it. I more or less refused to get off an uncomfortable metal folding chair in the corner of the dance studio until the instructor gave up on me. I suppose my intense lack of coordination didn’t help much the few times I gave it the ol’ college try, either, and there is nothing, nothing, flattering about a tutu on a fat girl.

I hadn’t, at that age, really comprehended what being fat meant. All I knew was that when I sat on the toilet, my tummy would make two lips and it was fun to play with. No, understanding came later. Along with low self-esteem, horrid moments of potent self-hatred, and social ostracism at school.

On the upside I developed a winning personality to make up for my physical shortcomings; there is always a silver-lining to everything.

I spent my whole life dreaming that one day I might be skinny. One day I might be beautiful. One day I might be all of the things I never thought I could be.

But then I grew up. I realized that I was loved, and lovable, and that so long as I knew what a wonderful person I was, there would be someone in this world who knew it as well. And I did find him- my rock, my lover, my best friend; the man who looks at everything I hate about myself and tells me that I am sexy. And it stopped mattering as much.

But as content as I am, and even though my heart and my soul are whole and happy, my body has slowly started to cry uncle. At 28 I began having knee problems, something that is genetic in my family, and later I was almost prostrate with back pain on a daily basis. I’ve had to sit in a chair to pray for more than a year because I can’t handle getting down on the floor for sujood.

I couldn’t handle it anymore. I had dieted and failed. I had exercised as much as I could considering my physical limitations, and failed. I restricted myself to a 1,000 calorie a day diet and exercised and failed.

So I decided to get gastric bypass surgery.

My mom did it 5 years ago and had wonderful success, and I was with her for much of it so I saw all the ugly things about the side-effects of the surgery, and the repercussions for not following the rules. I know that with my front-row seat on my mom’s journey I am going into this with my eyes wide open.

This surgery is not the magic pill; plenty of people have had it and misused it, and gained back all of the weight. I intend to use it as a tool to help me with my goals, goals of eating healthy, goals of conquering the elliptical (seriously, this machine is my mount Everest), and a goal of finally being able to do everything I can to ease my fibromyalgia pain. Oh Lord, if nothing else I am having this surgery on the off-chance that it will help my fibromyalgia.

I am not using this surgery because I think that it will make people love me more. No, I have an immense amount of love in my life already. I have an amazing husband who is everything to me; who supports me and encourages me through the hardest times of my life. I have a mother who is there to guide me through this. I have a wonderful family who cherishes me. And I have an absolutely amazing group of friends who keep me strong.

I love you guys for that. So much.

This surgery isn’t to make me beautiful because I am beautiful already if only for the beauty of those around me.

And frankly only God knows what is in store for me, but I feel so much hope.

I apologize to all of you who want to comment with words of encouragement, but I am closing the commenting on this. I have already had my fill of people who are of the opinion that I just didn’t try hard enough and I shouldn’t have the surgery because it is the lazy way out.

Send me love, send me light, and make du’a for me please.

Being my own doctor

 

I’m just going to lay this all out on the line as none of this is what I would consider to be private information I wouldn’t tell friends. It’s just that working for so long in the medical field I have this annoying little voice in the back of my head going, “but this is private patient information and it’s in violation of HIPAA!” However the patient is me and I’m putting the information out there so would it just please shut up already.

 

I have Fibromyalgia (FM). This sucks. I also have what was diagnosed as Undifferentiated Connective Tissue Disease (UCTD). This also sucks, in some ways quite a bit more than FM does.  I have a feeling in the way bitty back of my gut that I may only have UCTD and all of my FM symptoms are caused by secondary disorders arising from UCTD.  However it would be close to impossible to prove it and I have so many FM symptoms that it does me better to simply keep the diagnosis.

 

What inspired me to write this post today is because I got a bit of information last night that confirmed something I’ve been SAYING all along; I knew it to be true and yet all I’d get were some pats on the head and a “well maybe, but..”

 

In this particular case it is very much my own fault that I didn’t prove them wrong before this, but what I want to write about today is my growing realization that I am, and must continue to be, my own doctor.  And how frustrating this is.

 

The results I got last night were that although I’ve been taking iron supplements and my iron levels are fabulous (for probably the first time in… well a long time) but I am still dangerously anemic. I knew this to be a fact and it is why I resisted taking iron supplements for so long. Therein lies my mistake, I could have proven this years ago if I had just taken them. It is also a mark of the failure of the medical system that I feel like I have to prove the doctors WRONG in order for them to listen to me.

 

I also expected this because even though I was taking the iron, I was still having my familiar bouts of dizziness and momentary blackened vision when I stood up quickly. If you know me in real life and you see me stand up, stand for a few moments looking blank, and then continue on my way it’s because I can’t see a damned thing and I need to wait for my vision to clear before I can walk. I don’t remember a time when this didn’t happen.

 

So now, here I am, with the proof that something else is wrong and where does it get me? Nowhere. There are an almost unlimited amount of things that could cause my anemia, and most of them are scary. The ones that aren’t scary are the ones they can’t really prove, all they can do is slap a sticker on me and send me on my way. “This one is anemic, so refuse to do surgery on her even though there’s nothing she can do about it.”

 

And I can just see an un-ending future of trying to explain to new doctors that I am, in fact, not iron-deficient and no I can’t fix it so yes you’re going to have to figure out a way to heal around it.

 

Beyond that, it was this morning that I was doing some research into non-iron-deficient anemia and I decided to re-familiarize myself with the standards of UCTD. It was a diagnosis I had never really understood beyond that it made my body attack itself. During this research I stumbled across a syndrome that can be caused by UCTD/MCTD which explains a number of things I’ve had for years. Things I went to my doctor and asked her if they could be caused by my disorders to which I never got a good reply.

 

Good reply? I never got a reply; I got vague promise to look into it and nothing since then.

 

And yes, I could ride my doctor like a prize-pony until I got a response but all that would get me is my doctor throwing lab-orders and MRI’s at me until I or my medical insurance cried ‘uncle.’

 

So instead I settle down in front of Dr. Wikipedia with a dictionary and some paper to take notes on and wade through such enlightening terms as “Erythroid hyperplasia with accelerated production of red cells, reflected by reticulocytosis, and slight macrocytosis in peripheral blood.”

 

And in the end, what does all of this time spent in research get me?: an upset doctor who doesn’t trust Wikipedia or internet sites. Sometimes the information IS wrong, or misleading, but it’s a fuck-load more than I got from my doctor.

 

I don’t have an answer for other people who find this blog while in their own quest to figure out what the hell is wrong with them when the doctors won’t listen. All I can do is thank God for Wikipedia and close to a decade of experience working in the medical field. I can at least read through an article and have a small understanding of the gist of the medical terms. I can’t imagine how confusing it would be for someone who hadn’t worked with these terms before.

 

And I can hope that armed with specific questions and requests for the doctor I’ll be going to see tonight, I might, just might, get to figure out what’s wrong with me. Although it’s not as likely as I’d like to think considering that I’m going to a physician I’ve never seen before because it’d be two weeks before I’d have been able to get in with my PMD.

 

Honestly at this point I’m wondering if I should fuck-all and go straight to a Rheumatologist with this. Maybe I’d be able to get in for an appointment sometime before next year… maybe.

 

And please, my friends, I know that you care about me and I appreciate all of your well-wishes ahead of time. Please don’t feel that you have to write something for the sake of my illness. I know that you’re all thinking it as you read. Make du’a for me, and don’t worry about commenting to tell me that you made du’a.

 

And if you are someone who has Fibromyalgia (FM) or Undifferentiated (or Mixed) Connective Tissue Disease (UCTD/MCTD) or both, let me tell you a few things I’ve self-diagnosed:

 

1.)    Stop, immediately, drinking and eating anything that has aspartame in it. The moment that shit became big back in the 90’s I knew that it made me flare up. Anyone remember Clearly Canadian when it first came out? It used to have aspartame in it and it would make me sick. I flare up whenever I have anything with aspartame in particular, although I try to stay away from any artificial sweeteners at all.

 

2.)    Dark colas make me sick as well. Not as sick as diet colas, but anything with caramel coloring makes me feel achy.

 

3.)    Things that have a lot of preservatives really also affect my FM and UCTD. After I eat them I become very fatigued.

 

4.)    Too much sugar affects me, but I will say that this may not be related to my FM and UCTD.

 

If I can think of anything else that I know, personally, makes me ill, I will write about it. Otherwise just keep an eye on yourself, if you feel yourself flare up, think about what you did/ate recently and remember it. And the next time you eat/do those things, see if you flare again. It’s the best method to find out what works for you.