BEYOND MERE SURVIVAL


Results! Results!

I felt pretty tentative sharing information publicly because I had little proof that things would work, besides saying “this is what I am learning, here it is…”. Finally, I can say that I have some really tangible ways to connect what I have learned, and how I changed lots of things in my life to respond to being sick, to actual results.

Last year, when I was diagnosed with fibroids, I was also found to be anemic, have a low white cell count, and high glucose.  I just got my blood work results, and 10 months after the abnormal ones, I am no longer anemic, and everything else is normal. On a practical/monetary note, I actually delayed getting blood work done because I could not find an affordable way to do it, but I discovered that the Chicago Women Health Center has a sliding scale blood test ranging from 25$ to 80$.

In addition the fibroid has not grown, and it has actually shrunk slightly. The symptoms ( heavy bleeding, pain, weakness, nausea, dizziness) have also improved severely.

It is a longer road to try to get better this way, but it feels much more permanent and deep than taking the pill to stanch the bleeding, or an operation to remove the fibroid without addressing the imbalance that caused it in the first place. In the past year, with the death of Steve Jobs, there has been so much talk of how he would not have died if he had not subscribed to “wacky”, “alternative” treatment like acupuncture or diet change. It sucks to think that such dissing may discourage people from taking care of themselves in ways that could be very helpful.

For me, at least, changing my diet, exercise routine, and adding yoga and acupuncture actually helped me manage and heal from a medical condition. I’ll be happy to share more in-depth info if anyone needs it.

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Sharing information VI
April 18, 2011, 12:21 am
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So much stuff:

So one thing that has become more and more apparent is that all the unbalances are connected. The fibroid is not a single problem, but part of a larger constellation of issues. I finally found a good doctor by calling the number on the back of the “Healing Fibroids-A Doctor’s Guide to Natural Care”  book for MDs that use integrative medicine and found Dr. Malgorzata Sypien (The American Holistic Medical Association also has a website where you can search for doctors in your area). She took my insurance that I have with school, so the visits are very cheap.

During the first visit she was very attentive, and immediately wanted to do a blood test. I have begged my previous doctor to do a blood test, and she dismissed it. I got my results this week and it turns out I am anemic, my white cells are very low and my glucose it too high. It somehow all relates to the fibroid, in terms of affected overall organ health + circulation, and having a weaker immune and digestive system.

I am glad I have the information to take more decisive steps in getting better. She gave me supplements (Vitamin Code – Raw Iron), and changed my diet a bit  (yes to wheat and dairy, but only fresh, non-fat, least processes as possible, one citrus a day to aid iron absorption, no sugar of caffeine, not even green tea!). It’s really crazy to feel the effect of the iron already. I am not as tired, and have steadier energy throughout the day, instead of having ups and downs. Since fibroids are so connected to the circulatory  system, I am glad that I was able to find out I am anemic, and to start addressing it.

It is very frustrating that getting health care feels like a battle, like I have to convince doctors to check on things, because I cannot do it myself. I am continuing with the acupuncture, and it’s very beneficial still. I think that is all for now! Making progress!



Sharing Information V

What I know for sure now is that not going for traditional treatment is much more complicated than I hoped, and fraught with confusion.  I was doing my regiment of acupuncture,and a gluten-free, vegan diet. Then I had to go to Chile for 10 days with school and it all went out the window. The staple foods that I ate there were freshly baked white bread, avocados, other veggies, fresh cheese (non-pasturized), and the occasional glass of wine.

I would have expected to feel sick, and I did a bit, but not anymore than you would expect being in a new place, with new foods and a hectic schedule.

Some people may be fine with the gluten-free, vegan diet, but for me it was insanely expensive, and prohibitively time-consuming. Also many foods such as almond milk, tofu and soy yogurt are very processed.

My doctor suggested that I was fine in Chile because what I ate there was very simple and unprocessed, while in the US it’s very difficult to find unaltered foods.

So the new thing is to try to eat a bit of everything, but in the most unprocessed form that I can find. I am worried it will cost more than I can afford. In the whole city of Chicago google could not find a bread bakery. Panera came up for shit’s sake! I think it will have to be the farmer’s market, but again the cost factor is a bit terrifying. I could not find much research about the idea of a “simple” diet being helpful for digestion or fibroids, but unless I find a cheap nutritionist, it might just have to be a trial and error process for now.

I also have been boiling Astragalus for tea, but it’s too early to feel any effects from it.

All for now!



sharing information IV

The diet is really helping.

No dairy or gluten for now, but the symptoms of the fibroid have definitely taken a turn for the better. Less hemorrhaging, pain, bloating, etc.

Without a doubt it is very demanding to eat gluten-free and dairy free. It takes a lot of planning and it makes me feel like a party pooper. Food is absolutely a way of sharing experience and a means for people to spend time together, but the way I am eating poses a real challenge to that.

I am starting to think that isolation is another major impact of disease. It creates a wall between people. It has happen numerous times in the past two weeks that people have offered me food, or that communal food was bought to share at school, and I had to say no. When asked why I am not eating it’s very uncomfortable to explain the reasons behind my ‘no’, and just saying ‘I don’t eat dairy and gluten’ makes it seem like I am some self-righteous asshole. Even being vegetarian felt that way sometimes, as if saying “I am vegetarian” was read as really saying “I think that the fact you eat meat is very bad and I am better than you”.

I am trying to get better at figuring out how to not let my medical needs create an insurmountable distance between me and others.

The good news still is that the diet is making a difference, in conjunction with acupuncture, medicine ( Gui Zhi Fu Ling Wan ), and exercise.  No surgery or short-term palliatives.

I am also learning to cook foods I have never eaten before like amaranth and millet, so I will post recipes soon!



sharing information III – food edition
January 30, 2011, 3:55 pm
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I wanted to share some info I have been gathering about how food impacts fibroids growth and healing. I am going to have to make some changes to my diet, though nothing too crazy drastic.

I have been researching books, and so far the best one has been: “Healing Fibroids-A Doctor’s Guide to Natural Care” by Allan Warshowsky. It’s cheesy at times, and a bit too new agey for a comfortable read, but it does lay down a good foundation of what could be helpful in restoring hormonal balance, which is what leads to fibroid growth in the first place.

I made docs for “yes foods” and “no foods” to just have a sense of what I should eat or not eat. It’s nothing surprising, just lots of veggies, legumes and fruit. The fact that a gluten free and dairy free regiment is encouraged will make it nearly impossible to eat out, and a pain to travel, but i am gonna try not to let the food choices limit my life too much.

The cost is another obvious concern. Eating an all organic, gluten free and dairy free diet is expensive, but I am hoping that as I get used to it I can get better at becoming thriftier…

here are the docs- hope they help!

yes foods

no foods

I am also attaching pic in case someone does not have Excel-click on them to see them more clearly!



sharing info II
January 26, 2011, 2:59 pm
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updates on treatment and all that.

I have been doing acupuncture once a week, and it has helped reduce the pain noticeably, which was surprising, but welcomed. I was also prescribed Gui Zhi Fu Ling Wan that I have been taking regularly.

The blood loss is still pretty crazy, but i am hopeful that it will get better with time and treatment. I started exercising,  but it actually made me feel really bad/weak/nauseous so I stopped, as my doctor thought it would be too much.

my MD keeps suggesting the pill, but I really don’t want to take it, as it does not solve the fibroid problem, but just controls some of the symptoms, though the side effects make it not worth it ( for me at least).

diet wise, just trying to keep it generally healthy. no alcohol, or crazy processed foods.

I have been trying to find more people who have been using acupuncture as treatment, online or otherwise, but there isn’t much out there…

will keep posted!



Finding information and sharing information

It’s been a long while since I posted because I am not sure about what I want this to be. there are so many facets to my life, that choosing to write about one, or present one only seems so reductive and limited. I wanted the blog to be a forum to share information and knowledge that was useful to me, but it started to seem schizophrenic. do I write about parenting or grad school? dealing with being poor or health care vows? music/art stuff or gender violence ? it goes on and on.

Still, as I am harvesting knowledge to be able to survive and function, it is starting to feel short-sighted not to share it. Especially when there seems to be a lack of information out there that could be helpful to people, which brings me to my present scenario.

I have recently been diagnosed with uterine fibroids, and as I started to do my research I quickly realized that there isn’t a ton of reliable information readily available. What I found is often contradictory or unclear and even doctors seem to have diverging opinions ( surprise surprise). For starters it was difficult to get a diagnosis in the first place. I began having symptoms a few years back, actually, but my yearly exam did not yield much besides the routine “oh well, you know, you should get on the pill to help with cramps”.

Maybe I was just going to the wrong doctors. It also may be that fibroids are hard to find until they become sizable, or the symptoms become disruptive to everyday life.

Even figuring out what a fibroid is has been a challenge. It is a growth, usually benign ( though not always), that can grow in and around the uterus. It can cause pain, heavier bleeding, bloating, cramps, and infertility. The causes of fibroids are unknown though there is a correlation with hormonal imbalances, stress, being overweight, poor diet, and being over 35. So I got the stress, but I am not over 35, or overweight. I eat well, and don’t drink.

Still, they came.

Where it gets even murkier is: how can fibroids be treated?

One doctor told me I should do an ultrasound to see where the fibroids are located, and make sure they are benign, in addition to monitor their growth closely. She also let me know that at their present size (she used a golf ball comparison, and now that’s all I can think about when I see a golf ball) they could seriously endanger my ability to have a child. Another doctor instead was fairly dismissive and suggested the pill to take away my period completely and manage the symptoms. BUT, if there is a correlation between fibroids and hormonal imbalances, why would you want to throw in more hormones, and synthetic ones at that? I am wary of that.

There is surgery and ultrasound therapy although it is prohibitively expensive and often the fibroids just come back. Not for me.

 

Other things that have been shown to help are acupuncture, changing your diet ( no processed foods/alcohol/refined sugar and all the other bad stuff), exercise and therapeutic massages. The problem with those things is that they are expensive, in a way that can only make my stress worse. Still, not doing anything is not an option.

Thank god the Chicago Women’s Clinic has sliding fee scale acupuncture, so I had my first session today. Acupuncture is definitely not pleasant, the insertion of the needles is not painful, but I did feel an ache, tightness and electric shock-like sensation that was pretty unpleasant. I also was given supplements by the acupuncturist to help with healing.

I imagine it will take a bit for acupuncture to make a difference, but when I came home the pain that I usually have where the fibroids are flared up for a few hours and I had to lay down. I am hopeful it will get better.

So here is where I am at. I do want to share how treatment goes in the hopes that it can be helpful to others dealing with similar situations. I am embedding some links that I found in doing research, though it is only a portion of the information I came across.  I wanted to include some of the sites that seemed to explain things clearly and in a concise manner.