My Struggle With Food & Weight

In the spirit of Disclosure: An Open Book, there's something that I'd like to share.

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I've been struggling so very much with food and weight over the past few years, but in a very different way than most others.

I don't need to lose weight; I desperately need to gain weight.

There's not really an outlet for those that are having difficulty maintaining or gaining weight. Most people just say, "I wish I had that problem." Not to this extent, you don't!

I don't have an eating disorder... well, it's possible that what's happening to me may actually be part of a disorder that I'm not aware of. I've been labeled as anorexic my entire life because I've always been very skinny. I hated that being said about me, especially back in my school days. It's the equivalent of people saying nasty things about people that are overweight (like calling them a pig or whale). It's hurtful! When I was younger, I used to eat and eat and eat, and I was active in sports. I knew I was skinny, but I wasn't afraid of gaining weight. And, I never binged or purged.

My challenges have been different. I know that I need to gain weight. I know what to eat / how to eat well. But, I still can't do it consistently. I also know that I need to work out to regain some of the muscle that I've lost; but I have to get the eating under control, or I won't have enough energy to even think about working out in any capacity. It's a daily battle!

vintage weight gain ads

I sometimes feel a sense of helplessness because I truly am trying my hardest to do what I know I need to do. I don't want to be or stay an unhealthy low weight. I want to be back up to what I was before the accident... it would help with my treatment, too (neurostimulator, medications, etc).

I don't really care for looking at myself in the mirror (I've written about it before in a post called Mirrors). There was a day in late September that I looked at myself in the mirror, and I was frightened. I looked like a skeleton. It scared me, but I still haven't been able to eat more or put on weight.

To be completely honest, part of why I may not be eating enough could be that I fear the debilitating abdominal pain and cramping that I get (due to IBS). People that haven't experienced such wrenching pain simply can't understand. It's such a heavy burden to know that the pain is possible anytime I eat anything.

I've been using a calorie counter app (I finally found one that allows you to set a goal to gain weight). It helps me see just how little / few calories I often intake. After I enter everything in that I've consumed in a day, it'll tell me how much (or little) I'll weigh if I eat like that for five weeks. Seeing that number is sometimes pretty scary. So, I'm trying my hardest to reach the goal caloric intake, but I often feel like I'm just so desperate to meet the calorie goal that I'm actually looking for high calorie foods to eat (which are often very unhealthy).

I have to be very, very mindful about my eating. It's utterly exhausting!!! I hate that it's a daily struggle just to make myself eat (some days are worse / harder than others). I constantly have to fight horrible nausea and often have to try to force-feed myself. But, there are times that I just can't eat - even the thought of eating makes me feel physically sick, and it just worsens with the smell and taste.

But, I'm not giving up! I want to get back to my normal weight. I'm still trying!

This post was written as part of the National Health Blog Posting Month (NHBPM).

Disclosure: An Open Book

Today's prompt is about disclosure - how I decide what to share or not.

I've always been a pretty private person, but I'm allowing myself to be more open and vulnerable.

I battle with things that have a huge stigma around them. Migraine disease, Fibromyalgia, IBS, depression, anxiety... these are all invisible illnesses. People can't easily see the battles I face with these diseases. But, I've found that by discussing parts of these illnesses that aren't openly discussed, I'm inviting others to know that they're not alone in what they're facing.

So, I try to be open and willing to share anything... with people that I feel are sincerely / genuinely asking (either out of concern and / or necessity). People that I meet in life that don't seem to really care, often get a shortened version of things. But, I simply go with my gut - unless I feel uncomfortable with something someone asks me (which, again, is usually due to insincerity of the person asking), I'm pretty much an open book.

It's taken me quite a long time to get to a point where I can share this much about my journey. And, I've found that allowing myself to be vulnerable has brought with it great blessings. Others will sometimes tell me that I've put words / a voice to something they, too, have been facing. I feel like I'm staying true to myself, and it seems to be helping validate aspects of some other people's experiences / journey.

I share because I can. I share because it helps me sort through things. I share because it may help someone else out there. I share because God has put a desire to in my heart.

This post was written as part of the National Health Blog Posting Month (NHBPM).

Small Things With Great Love: An Update

"In this life we cannot do great things. We can only do small things with great love" - Mother Teresa

What a beautiful reminder of what life is all about!

One of my grandmothers has been having a really rough time. She had foot surgery on October 11. She was taken back to the hospital on the 25th, and has been there since. She had surgery on the 27th, due to a blood infection from the previous surgery. She's been in the hospital for a week, and was scheduled for surgery this morning to move a vein from her right arm to her left leg because she's not getting enough blood flow to her foot for it to heal (I haven't heard an update on how she's doing yet).

I have, in many ways, felt helpless. I'd love to have the strength and energy to go to her house and unpack some things (they moved a few month ago and haven't been able to get completely unpacked and settled yet), while she's still in the hospital - well, anytime, but it'd be a nice surprise. But, I haven't been able to, thus far.

So, I've been doing what I am able to do.

• I've been keeping her in my thoughts and prayers.
• I've been asking others to keep her in their prayers.
• I've been able to visit her twice (so far) in the hospital with my mom.
• I've tried to be there to help support my mom, as well, because this is a difficult situation.

My grandmother is a strong woman, and she's going to be alright. The reality, though, is that "alright" might not look like she or we would like it to. Physically, she can't do a lot of things that she used to and would like to still do. But, she is surrounded by love and support, and we'll work together to adapt however we need to.

This post was written as part of the National Health Blog Posting Month (NHBPM).

Why I Write

I know I haven't really been able to keep up with my blog lately, but I'm still here. We have some things going on with the family that have needed to be high priority. I'm going to try to participate in National Health Blog Posting Month (NHBPM) this month. I've been out of the writing/blogging world for a little while, so I hope I'm able to keep up. I'm not sure whether I'll follow the provided daily blog prompt or just write whatever comes to me, but I'm going to try to get a post in each day in November... I know I'm already starting a day late, so I hope to catch up and get 28-30 posts done this month.

The prompt for November 1st was "why I write about my health." I've written about this topic here and here. I can't really think of more to say on that topic right now, but here's a quote that I absolutely love:

"The role of a writer is not to say what we all can say, but what we are unable to say" - Anais Nin

This quote means a lot to me because I think that it describes the beauty and power or writing. There are times that I'm able to write things that even I can't say aloud. Writing, for me, is a way to express myself in ways that I may not otherwise be able to. I open up my heart and just let me fingers start typing.

"Fill your paper with the breathings of your heart" - William Wordsworth

I often surprise myself with what I'm able to express through writing because I go on tangents that need to be explored, but that I may not have been aware of (or had dismissed as unrelated) before. It's almost magical!

This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.

Action Needed (by 11/1/12): Comment to FDA About Migraine

The FDA is in the process of compiling a list of 20 diseases to receive intense focus as part of a five-year pilot program. The FDA will hold quarterly meetings with stakeholders (patients, doctors, caregivers, etc.) to try to understand the current state of each disease from all angles.

Migraine Disease (and headache disorders) was not included in the preliminary list of possible diseases.

Patient advocate and educator Teri Robert attended the public meeting on October 25, and had a chance to speak for 2 minutes. It's impossible to share the severity and impact of Migraine Disease in a mere 2 minutes. Fortunately, though, the FDA wants to hear from us, the citizens, before they make a final decision. We must do our part by submitting our comments online (I'll include the criteria the FDA is using to choose the final 20 diseases, so that you can allow them to guide you in your comments - see below).

Here is patient advocate Ellen Schnakenberg's call to action:

We desperately need your comment TODAY! 

It has begun. Teri Robert is right this moment in the FDA discussion, standing up for the 37 million of us who suffer Migraine Disease, and the countless others with one or more of the other over 300 headache disorders that are being ignored, most likely as a result of the pervasive stigma which has turned so many heads away from us. Very few of you have taken the time to sign the FDA comments that we so desperately need.

You need not be a headache patient to do this!

This week is sooooo very important, and I am counting on YOU to take 5 minutes out of your day to literally change the lives of millions. Teri, Diana and I have had your back for years. This week I need you to have ours. All I am asking for is a few minutes of your time...

Step 1: Read Teri's article here https://migraine.com/blog/comment-fda-migraines/ which tells what the FDA wants you to say.

Step 2: Read Diana's post here http://www.ahsacheblog.org/2012/10/fda-calls-for-citizen-comments-about-migraine-be-heard.html which tells what the FDA wants you to say.

Step 3: Write a short comment to the FDA panel that will be choosing the 20 diseases and disorders that will receive their time. Do this in a word document or note, but not on the FDA site yet. This is so you can perfect it by going back through the two articles to be sure you have hit on at least some of the points necessary.

Step 4: Go to the FDA link and post your response, either directly there, or if it's longer than 2000 characters it may be sent as a document.

*** Comments must be submitted BY November 1, 2012 ***

Step 5: Post this on your Facebook page and beg and plead for your friends and family to help too.

37 million Migraineurs are counting on you. Peeing at night was put on this list over Headache disorders or Migraine, which have been stated by the World Health Organization as more debilitating than quadriplegia. Whadda you have to say about that?

Nothing?

Really?

These are the criteria the FDA is using to choose the final 20 diseases. Please keep these factors in mind in writing your comments to the FDA:

• Disease areas that are chronic, symptomatic, or affect functioning and activities of daily living;
• Disease areas that reflect a range of severity;
• Disease areas for which aspects of the disease are not formally captured in clinical trials;
• Disease areas that have a severe impact on identifiable subpopulations (such as children or the elderly);
• Disease areas that represent a broad range in terms of size of the affected population; or
• Disease areas for which there are currently no therapies or very few therapies, or the available therapies do not directly affect how a patient feels, functions, or survives.

Other tips for writing your comments:

• Prepare your comments in advance before you go to the FDA submission page. This will allow you to spell check, proofread and perfect your arguments and wording.
• Balance your personal story with the big picture of the impact and burden of Migraine disease.
• Try not to be overly emotional. Stick to the facts.
• Utilize this up-to-date list of facts about Migraine and other headache disorders: Stats and Facts About Migraine.
• Don't forget to consider the FDA's decision criteria (listed above).
• Be as concise as possible.

*** And, if your comment is longer than 2000 characters, save it as a document and send it to them by clicking the document button on the FDA comment page.

Lessons: Learning to Accept Imperfection (Part 3)

When I was in my car accident (October 2008), my life suddenly came to a complete hault! I couldn't work, I had to move back home with my parents (oh, how I'm so grateful to have such amazing parents!), and I had to face a whole slew of imperfection that I wasn't prepared for. We'll fast-forward a bit (partially because I'd rather not even try to remember, and partially because I simply can't remember, the months directly following the accident).

"I do not believe that sheer suffering teaches.
If suffering alone taught,
all the world would be wise,
since everyone suffers.
To suffering must be added
mourning, understanding, patience, love, openness
and the willingness to remain vulnerable."
- Anne Morrow Lindbergh

After living with my parents for the 10 months following the accident, I moved to Tulsa to start graduate school (and live alone, until Jeremy and I were married and he finished school early the following year). I felt that I was ready to try to return to school... and/or maybe I just couldn't cope with the thought that I wouldn't be able to return to and do well in school. I didn't have a clear-cut financial plan, but I was able to get an assistantship lined up a few days before classes started. Everything seemed to be falling into place.

"A man would do nothing if he waited until he could do it so well that no one could find fault." -John Henry Newman

So, I became a full-time student, a part-time graduate assistant, and I was planning a wedding for mid-semester... not the best of ideas, but I was excited and determined... things that I hadn't felt in months. My health didn't play along well with my plans, though.

I felt like I was keeping up well with my classes, so I never disclosed or sought accommodations for my disability... at least not until the end of the semester, when it was "too late." I was scared to death by some of the things that I was feeling for the first time... I'm actually scared to even say it here... I'd never even thought about cheating before I started having so much trouble with grad school. I lost a lot of productivity because of my health, and my brain simply didn't work so much of the time -- I wasn't able to read and/or I'd start reading and have to constantly re-read passages, knowing that none of it was going to my memory... I misunderstood even simple questions... I couldn't think on the spot, which affected my participation in class... I struggled with recalling information on tests, even once I sought assistance and was given more time for testing (it helped a little, but I still struggled so much). I HATED myself for the mere fact of even having thoughts of cheating. I didn't act on it, but that showed in many of my grades. It was an extremely rough cycle.

"Unless I accept my faults I will most certainly doubt my virtues." - Hugh Prather

I did start seeing a therapist / counselor on-campus, but it didn't help at all. I started seeing someone off-campus in the spring / summer, who was able to help me with my PTSD, which had been getting worse (flashbacks, still super-jumpy in cars, etc). It seems to have helped a lot (with my PTSD, but not with coping with chronic pain), though I still struggle with being jumpy in cars.

Anyway, I completed the semester by being placed on academic probation (because my GPA was 2.67, less than the required 3.0). That was a breaking point for me! I know that grades aren't everything, but school and academics has always been "my thing." I've always identified myself, at least in large part, by my intellectual capacity. And, then, I found myself on academic probation?!

It wasn't even just that... I was barely able to work any hours for my graduate assistantship (I won't even say how few I was able to work because it's embarrassing and heartbreaking to me). Between my migraines, anxiety, and trouble keeping up with classes... I just couldn't do it. Then, the spring semester got even worse! My graduate assistantship was with a different professor. Between her being sick, my health being worse than ever, and lack of communication between us... let's just say that I was chewed out and humiliated several times, putting  things like my dependability and hard-working qualities into question. I hit another breaking point! All of those things that she criticized me about (communication, dependability, availability, and hard-working) are things that I felt confident and proud of myself for being... at least before the accident. Another huge piece of my identity missing.

Back to academics - I worked so hard during the spring semester (on academic probation), and utilized the assistance from the school's center for student academic support - Jeremy and I were married, and he was living with and helping take care of me. I was determined to get myself off of probation. I knew I may not be able to return to school, but I wanted it to be my choice - I couldn't bear the thought of getting kicked out of graduate school (the pain of that thought was even more painful than the thought of not being able to finish the program). I completed the semester with a 3.67 GPA, which raised my overall GPA to 3.17. My health took a huge beating, though.

I decided to take a leave of absence, not knowing if I'd ever really return. It was extremely difficult to make the decision to not return to school to finish the 2-year program (plus internship). There were a lot of different considerations in making the decision, but it was the right choice for many different reasons. Honestly, I knew for a while that I wasn't going to return, but I couldn't handle making it an official decision... I had to work to get to a point of accepting it, first. This kept us in Tulsa longer than we would've liked to have been, but Jeremy was very understanding that I needed to really come to terms with my decision about school before I could leave.

"The imperfections of a man, his frailties, his faults, are just as important as his virtues. You can't separate them. They're wedded." - Henry Miller

Lessons Series:

Lessons: Learning the Hard Way (Part 1)
Lessons: Learning the Hard Way (Part 2)
Lessons: From Suffering to Empowered
Lessons: Learning From Life With Chronic Pain
Lessons: Finding Joy

Lessons: Perfectionism (Part 1)
Lessons: Perfectionism (Part 2)
Lessons: Learning to Accept Imperfection (Part 1)
Lessons: Learning to Accept Imperfection (Part 2)
Lessons: Learning to Accept Imperfection (Part 3)