Hope for a Cure!

I know, I rarely talk about cures with my disabilities. I don’t believe I have done so with positivity in mind. I have yearned for even hope however, that Celiac Disease can be cured and HOPE has arrived. Not a cure, but a clue.

I dream a dream of pasta. I dream a dream of pizza. I dream a dream of being able to afford things that I want to eat not what I can afford to eat. I dream a dream of cake. I dream a dream of cookies. I dream a dream of a sandwich. I dream a dream of tomato soup!

Oh how many times have I lain in bed longing for variety. I could possibly put away my Epipen. Oh what a dream! What a joy! I dream of a balanced diet, with true balance not “Can I afford this fruit today?”

I know not everything will be cured and it may take decades. There is hope. Thank you scientists, Doctors, and please don’t give up. The Celiac community appreciates even the chance to hope.

I count Celiac Disease as one of my most disabling disabilities. It cuts me off from family dinners. It cuts me off from pizza with the girls. It cuts me off from even a reasonable budget. It limits my life severely. I cannot afford to eat a GF diet but I cannot afford to not be Gluten Free. It is the millstone around my neck at meal time.

To paraphrase the famous quote, “Free at last, I can have bread and I am free at last.” To hunger, to starve. It has made me appreciate food all the more. I feel like Scarlette O’Hara now, this gives me hope that I shall NEVER go hungry again.

I may keep my gluten free brownies though… they are chocolatier!

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6 Comments

  1. When you say you dream of pasta, pizza, etc. … I assume you mean, not only pasta (etc) that is safe to eat but also within your budget? (Since I know I’ve seen those in wheat free/gluten free versions in natural food stores, though often costing more than the wheat varieties in bulk stores … I know from your other posts that money is a huge issue for you … this is one area where class privilege issues clearly intersects in a big way with dietary privilege issues)

    I regularly buy Pamela’s products (wheat free and gluten free) chocolate brownie mix, not because I need to (I don’t have Celiac disease) but simply because I like the taste! Plus, you can modify it to make cookies or cake instead of brownies if the mood strikes you, so instead of buying separate mixes for all three treats, you can just stock up on the one mix 🙂

  2. I have a completely different viewpoint on this topic and it’s one I share on my blog and with my support group members. The solution to celiac/gluten intolerance is eating gluten free. No brainer there (and clearly, I’m not addressing the “cure” term), but the difference between those who consider it a blessing (that would be me and more and more other folks) to those who consider it a curse is the approach. Bear with me. Before I had to go gluten free, I followed the Standard American Diet. While I cooked, I still ate lots of packaged foods and plain junk. When I went gluten free, I went to that little gluten-free specialty section in the closest grocery store. I bought some stuff. I tried it. It tasted crappy. It was expensive, and guess what? Other than being gf, the ingredients were not particularly healthy. After grieving the loss of my food for a while, I just started considering all the foods I loved that were naturally gluten free and focusing on them as whole foods or made into recipes. My food bill stayed exactly the same as before. I could almost always find something to eat in restaurants and at friends’ houses. I stopped missing the gluten-containing foods and, in fact, when I occasionally ate the gf specialty foods as substitutes I did not feel well. There are so many naturally gluten-free foods, meals, and desserts that are easy to make, will make you and your friends/family happy (because it’s the same food–no weird taste or texture), and won’t impact your wallet any more. Please check out my blog (glutenfreeeasily.com) for my gluten free easily (gfe) approach. I really think you’ll find it helpful. I get emails all the time from folks who say that it’s changed their lives. I’m not exaggerating. Check out the gfe’s tip sheets for 50+ Foods You Can Eat Today (a transitional resource sheet … not all stuff you’d want to eat all the time, but many mainstream foods you can eat safely), 50+ Meals That Are GFE, 50+ GFE Desserts, and so on. Also, be sure to check out my Stop the Madness post: http://glutenfreeeasily.com/stop-the-madness/ and my Flourless, Gluten-Free Pizza: http://glutenfreeeasily.com/flourless-gluten-free-pizza/. The pizza is made from every day ingredients and it tastes like real pizza … read the comment reviews! It makes me so sad when I read that folks are still lamenting that they are gluten free and not living fully because of it … looking for the “cure” or relief from the problem. It doesn’t have to be that way. Please read and think about this some more. And, of course, email me any time if you’d like to discuss further.

    Last, Kat, this is meant to be helpful and not offensive in any way. Thanks so much again for responding to my query on the celiac listserv.

    Best,
    Shirley

  3. I am not personally offended, and this is good information for those who can eat most things other than gluten. Myself, I am limited due to other allergies. If I could eat vegetables at all, I would probably never notice the lack of other foods as I actually adore vegetables before the whole death thing.

    Also sorry for the delay in responding, it took a long time for this to show up in any folder on my replies section.

  4. Yes, I dream of safe foods. Lol I adore Pamela’s! I truly dream of the food itself being generally safe for everyone. I actually share about my money concerns here because that in and of itself springs from able bodied privilege. 600 dollars is not enough for anyone to survive on, but anyone on SSI (unless their state adds to it) is limited to that amount. I am sure that you are aware of some of the issues with SSI through your experiences with the baby.

    I did learn Gluten Free chocolate is fantastic. I had a great cake for my birthday and I shared it with people who aren’t allergic to chocolate (Sorry sis, sorry kids) and they were shocked at just how good it is.

    Unless you make it yourself, which is an ability issue right now, Gluten free is either super expensive (see a 20 dollar personal sized pan pizza that I got for my birthday) and tastes fantastic (again birthday food… so good.) or it is moderately budget bursting and tastes gross without the ability to store left overs. I am working with my new caregiver on some recipes now that cost less, are gluten free, and taste wonderful. I will post them someday (after I move)

  5. Thanks for sharing more about your experiences striving to find safe foods you can eat without demolishing your budget and still offering some appeal to your taste buds. It sounds very frustrating.

    Actually, I’ve never had first hand experience with SSI. But I do get the sense that, even though it’s supposedly designed to cover minimal living expenses, some of the base assumptions they use to develop a hypothetical montlhy budget may be flawed (eg, fails to adeqyatekt account for regional variations in living expense, and I think also fails to account for how housing costs in certain cities such as Wash DC or NYC are often much MUCH higher than anywhere else). Of course all this is problematic enough for the average person on SSI (or any other form of welfare support, for that matter). It does not account for the added expense that any person with any disabilities usually needs to deal with. A person with disabilities who is not only able to work but also able to earn a middle class or better income is more easily able to absorb at least some of these types of expenses without bursting the budget. So I think you’re looking at the intersection of able-bodied privilege (in that able-bodied people don’t have the added expenses to begin with) and class privilege (in that people on lower incomes naturally are disproportionately impacted by the added expenses).

    In the UK, they have DLA (I think “disability living allowance”) to deal with those added expenses, which can apparently be paid out even if you don’t qualify for other forms of welfare support. The stipends are supposed to be dedicated to disability-related expenses, such as personal care support (if that’s what a person needs), etc. It has its own set of flaws. But I wonder if we need something resembling that here.

  6. It is extremely frustrating but also when I make great discoveries, it can be more satisfying. My past experience as a chef has helped me a lot. The problem is that with limited ingredients there is only so much that I can cook up. I’ve begun to react to even these foods, which is a problem. I suspect my culmulitive allergy syndrome, as the doctor calls it, will continue to be a problem.

    You have it dead on with SSI, but add in the aspect that the experience of being poor is not there for anyone in our government or it is so far away they cannot really connect with that need. Being poor means that there is no room for any mistakes. This means if the bank screws up, you suffer. If your pet is sick, you either suffer or they do, which means you suffer. If your kids need shoes and they’re suffering from Giantism (my siblings) you suffer. It is a cyclic suffering that feels endless, and for many of us who cannot work a traditional job or are being overlooked despite our skills due to prejudice, it is.

    I have heard of the DLA, and of course it is flawed but there is a similar program. There are a few waiver programs here but there is always a waiting list, you may qualify and still be denied, and then you have to have a doctor’s note for any needed purchase. I am on the waiting list right now. The problem is, without that waiting list I have no methods of aiding myself without feeling like a beggar. A lot of disabled persons are called prideful and then when asking for help they are shamed for ever needing the help. Being disabled means you live on the fringes of society for multiple reasons.

    It’s difficult, but, because of constant advocacy, there is hope. Some charities also may help a person out but in my area there is absolutely no help for housing or anything that costs more than 100 dollars. This means scooter batteries are out.


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