Professional Patient

Belief in Symptoms Unseen

If faith is the belief in things unseen, then what do we call belief in symptoms that cannot be verified by medical testing? I have been having weird sensations in my legs... the sense of vibrating or falling (without either), feeling tingly and numb.... but nothing shows a reason why. All tests are normal. Also, I have fatigue that is so severe I cannot work more than 8 or 10 hours per week. But there's no way to measure my level of fatigue... no test, no graph that can say "yup, she's exhausted beyond belief". I know where things stand, but no one can "prove" that I'm not making it all up.

Once, a cardiologist told me there was no way I could have Marfan Syndrome. Five years later, a doctor told me yes, I did have it... I didn't even have to take a genetic test to prove it. I had enough symptoms to qualify without it. In the interval between the No and the Yes, I deeply suspected that I had Marfan. I just kind of knew.

So now I have a sense that SOMETHING has changed with my health. My fatigue is SO much worse than it has ever been, and my legs feel so weird and uncomfortable that I can barely exercise. But how do I get people to believe me, when no test can back up my explanation? It's maddening. I know I'm right. But how do I convince anyone else? Does it matter, as long as I know? (My disability claims examiner seems to think it matters very much.)

And what does it say about me that I am saddened when test results come back negative? When you have a weird symptom, you want to know why, even if it means you are getting sicker. You find yourself rooting for the bad news. It's macabre. And it's even more weird that you are disappointed when you get a test result that says "Hey, you're fine, no problem here."

Sigh.

Do You Get Sad, or Mad?

When your life seems overwhelming and unfair, do you get sad or angry? Or afraid? I all too often get anxious and sad. Today I am having one of those days where I can appreciate the zing of getting angry instead. The sentiment I have been fighting with all day is really simple: "This is not f--ing fair." I am quite frankly pissed off at God (or whomever/whatever) for making this year such a damn challenge. I lose my baby, I lose my Dad, I struggle to go back to work after 2 years of medical leave, I'm in the midst of what feels like a severe Sjogren's flare (achy, exhausted, mentally fuzzy)... and my boss picked today to ask me how soon I might like to put in more hours per week at work.

Being angry about things for a minute feels surprisingly good... it reminds me that I am a strong, fierce woman, even if I don't express it all that often. If you feel so inclined, try repeating this with me: "This is not fair! This is not right! I am so angry about this!" A little of this might go a long way in helping you cope... it offers a needed release.

Genetic Information Nondiscrimination Act (GINA) Passes Senate, Expected to Pass House

Good news! With overwhelming support, the U.S. Senate has passed the Genetic Information Nondiscrimination Act (S. 358). The Genetic Information Nondiscrimination Act (GINA) paves the way for the responsible use of genetic information while protecting against discrimination with respect to health insurance and employment.

All I can say is thank the Lord for this one. I don't think discrimination on the basis of genetic information is going to stop anytime soon, but once GINA is signed into law, it should give us a more specific way to sue evildoers. And hopefully, the act will prescribe enforceable fines, penalties, etc. for the aforementioned evildoers.

For more information, read the press release at the website of the Genetic Alliance: "Senate Passes Historic Bill on Genetic Information Nondiscrimination"

You can view the text of the act at the GPO website (it's in PDF format). I can't decipher the legalese enough to understand whether this act really has teeth to it. I sure hope so.

Remembering My Dad, Using Blurb Book Service

I don't often use this blog to promote the latest and greatest web tools and toys. Today is an exception! I would like to talk about Blurb BookSmart... software that allows you to quickly and easily create custom books that look fantastic and can be printed professionally at reasonable (ish) prices.

I'm using the software to design a book to memorialize my Dad's life. What he was to my family (father, son, friend, mentor, etc.), how he was to us (kind, loving, strong), favorite memories we have, best advice he gave us, etc. When we are finished, we will have a quality hardcover or paperback book (our choice) that we can put in a place of honor in our homes. And each and every person in the family can order one, if they want. Lots of people create scrapbooks after loved ones die; Blurb allows you to create something that everyone can have a copy of (no passing the scrapbook around or hand-making multiple copies of it), and that won't fall to pieces if you turn it upside down. And, if the dog eats it or (heaven forbid) it gets destroyed in a house flood or fire, you can always order another copy.

I love Blurb because I have always liked doing page layout (I helped with the yearbook in junior high and lit mag in high school), but I know I will never have the interest or skills to be a full-blown, fully-trained graphic designer. Blurb provides you with dozens of templates you can use to lay out your book. No guesswork required... what you see is what you get. The only caveat is that to do the real fancy-pants stuff in Blurb, you need high-res, large digital images to work with (i.e., photos from a digital camera). You can work with scanned versions of hard-copy photos as well.

Blurb comes pre-loaded with templates appropriate to a variety of book types: scrapbook-style books, wedding albums, yearbooks, blog books, cookbooks, and more. I think when I finish with my dad's book, I may start on a cookbook next. It would be nice to consolidate my endless, tattered pile of recipes I have printed off of the Web.

Hmm... I wonder if other people would pay me to lay out books for them using Blurb.... ? Someday, perhaps.

Grief and Emptiness

Sorry to have been so silent for so long. I resumed work (8 hours per week) in late February, and have been struggling with incapacitating fatigue ever since. Then, my dad died unexpectedly on March 15, and I flew to Atlanta to be with my step-mom and four half-sibs (ages 13, 12, 8, and 8) for a week and a half.

This year has gotten off to a rocky start, filled with losses and grief. My miscarriage, the death of my dad, the relentless exhaustion I've faced since going back to work. My life right now, in the face of these changes, seems very large and empty, hollow, and lonely.

What can I do to handle these feelings? I can't fill up the holes in my life... the abundant energy I enjoyed in my teens is surely gone for good, and nothing can replace a lost child or parent. But I know I need to engage, make a concerted effort to find new pursuits and relationships that help me feel content, present, and connected. In the meantime, a good friend recommended I keep putting one foot in front of the other. Period. The goal is not to get anywhere specific, but just to keep on keeping on.

Hidden Treasure on Carefirst.com: Full Policy Manual, Including Medical Basis for Coverages

In doing health-insurance related research online today, I stumbled across an amazing resource: a full, in-depth "policy reference manual" for CareFirst insurance plans. The manual is so complete that it explains the rationale for approving/denying coverage for any and every medical treatment you might possibly want. It also cites medical evidence that guides the policy's stance on covering or not covering a particular item/service. And the manual is searchable by keyword! You don't even have to wade through the entire file to find the one line of text you are interested in.

Oddly, this policy manual is NOT where patients like me would normally look for it. No, instead, it is shoved in the "Providers/Physicians" area of the CareFirst.com website. (View the online Medical Policy Reference Manual for CareFirst health insurance policies.) The manual is a really interesting way to see the rationale for coverage. Looking at the manual would help you understand how hard you might have to fight to get a particular treatment approved as being "medically necessary."

Do not, however, rely on these "policy reference manuals" to determine whether your health insurance plan covers a specific medical treatment or service. These "policy reference manuals" state the health insurance company's general opinion on the medical validity of certain treatments and services. You cannot be 100% sure that the information given in these online manuals matches what your specific health plan will cover. Your specific health plan may still choose to cheap out and not pay for certain treatments that the policy manual considers medically valid. For example, a CareFirst PPO plan that costs a fortune might offer the highest level of service, paying for routine physicals because they are a medically valid way of preventing later disease (diabetes, heart disease, etc.). A less expensive CareFirst HMO plan that offers a lower level of service might not cover routine physicals because they are just cheap bastards. If you want to know if a treatment or service is offered by your specific health insurance plan, you always want to check with the customer service team for your health insurance plan. And you might also want to to get a copy of the Summary Plan Document for your specific health insurance plan.

Can you find your insurance company's overarching policy manual online? You won't know unless you try. Go to the insurance company's website and look in the Physician/Providers section. Or try using the site's search box to hunt for "medical policy manual". You can also Google the phrase "medical policy reference manual" or "medical policy manual" and see if your insurance company's policy manual is on the Google results list. Using this Google tactic, I immediately found the medical policy manual for Blue Cross/Blue Shield of Tennessee, and policy manual for the Arizona Health Care Cost Containment System.

Happy hunting!

What is Life Without Work?

Yesterday was my first official day (half-day) back at work. Nearly 21 months since I first had neck pain and 18 months since my spinal fusion surgeries, I was finally back at my job.

By the end of the day, I was chatting with a good friend at work who has congestive heart failure, severe neck pain, and a host of other medical problems. Her doctor recently recommended she stop working, permanently. And she nearly wailed to me "What am I supposed to do, go home and wait to die?"

We live in an achievement and work-obsessed world. We measure the value of our life in terms of salary, degrees, awards earned, promotions, bonuses, the size of our business "network", etc. We focus on school and career achievement, of getting to some magic point in our lives where we have accumulated enough evidence to prove to others that we are good, worthwhile human beings. To prove once and for all that we measure up.

Leaving our career to tend to our health is terrifying. It doesn't matter if we plan to go back to work or not; suddenly we are confronted with an empty slate. Who are we and what are we worth if we do not work or go to school? How can we be valuable, worthwhile, successful? Who will notice our achievements (whatever they may be) if we don't have a built-in audience of professional colleagues? How can we be intelligent and ambitious when it takes everything we have to just tend to our health?

One way to start answering these questions is to think about the value of our lives in a broader context. We aren't just employees. And we need more than promotions and raises to feel successful and content. Self-help author James Arthur Ray suggests that true wealth involves more than just money. It includes health, relationships, knowledge/experience, and spirituality. We can turn to these additional areas to start redefining our lives and what it means to be successful.

Another way to start answering the question of self-worth and success in life without work is to think about the various roles we play in our lives, other than the role of employee or student. To whom are we parent, sibling, grandchild? Neighbor, mentor, peer? Friend? Counselor or teacher? Positive example? Who and what depends on us for care (kids, pets, aging parents, plants, etc.)? What avocations do we pursue (what are our passionate hobbies... are we chefs? gardeners? Stamp collectors? Community activists? Teachers?) How can we be of service in these roles? I call my lonely grandmother regularly because I know she needs someone to talk to. And it feels wonderful to shine that little bit of light on her day. I also recently guided my father towards dry-mouth products that will help him cope with radiation and chemo for throat cancer. I shipped him an entire box of products because I know he won't have the energy to find them himself. It feels good to know how to help him in this small way. I also smile every time my cat wiggles in delight when I pour her morning food. I know she depends on me for that. In these small kinds of gestures, I am a success. I have value. I feel content.

These examples of being of service in our existing relationships hint at a third way to start defining your life without work. You can redefine success and happiness as internal states of being. Much of the success we so often wish for includes some kind of external validation... your boss says good job and gives you a raise, your peers clap as you receive your award, etc. That external validation feels good, but it is not the core of the success itself. When I feed my cat or call my grandma, it's nice if they express appreciation, but it's not necessary. I get a sense of achievement in simply making the gesture, simply offering what I have to give. And I let my definition of success change with my changing health. On a good day, success is making it to work or calling my grandma. On a bad day, success is making it out of bed and deciding to wait to call my grandma until I have more energy to share with her.

And lest this all sound too new age and self-help-y, realize that there will still be ways to be successful outside of your own mind! You might write a great blog that gets lots of visits. You might volunteer and change someone's life through that activity, or even win an award for your service in that role. You might become the neighborhood or family expert at gardening, stamp collecting, dog training, or cooking. People will love and appreciate whatever talent, expertise, and passion you bring to life. Even if you express it outside of a career.

Coping with a Dry Mouth

Living with Sjogren's Syndrome, I battle dry mouth every day. Not "Ooh, I might need some water" dry mouth. Instead, high-end, "Shit, my tongue is velcro-d to my gums" dry mouth.

Thanks to a squamous cell carncinoma at the base of his tongue, my dad is about to join my dry-mouth world. (Radiation and chemo can be horribly drying, and destroy salivary glands, causing long-lasting dry-mouth symptoms.)

Dad, these tips are for you (and anyone else who has dry mouth from Sjogren's, radiation/chemo, drying medications, etc.).

Why is Dry Mouth a Problem?

Saliva naturally lubricates our mouth and gums and protects our teeth from cavity-causing bacteria. Without adequate saliva, everything gets dry, sticky, and irritated, and cavities increase.

Special products that can help:

1. Gentle toothpaste:

Most toothpastes have sodium lauryl sulfate and other foaming agents that are hard on a dry mouth. Dry mouth toothpastes like Biotene leave out these irritating things and include enzymes and other chemicals that fight off cavities.

2. Mouth gels and sprays:

Sipping water will help with dry mouth, but mouth sprays and gels provide longer-lasting relief. Oasis mouth spray is minty and great when you need a quick shot of moisture (in the middle of a conversation, etc.). Oral Balance liquid and Orajel dry mouth gel are thicker and harder to apply, but last much longer (I use one or the other when I go to bed at night… dry mouth can actually interrupt your sleep.)

3. Gentle mouthwash:

Mouthwashes often include alcohol, which burns up a dry mouth. Biotene mouthwash, Crest ProHealth rinse, Tom's of Maine fluoride mouthwash for a dry mouth, and Oasis mouthwash are alcohol free. Biotene and Tom's also include enzymes that fight off cavities. And as a bonus, Tom's lemon-lime flavoring really knocks out bad breath.

4. Special gum

People often chew sugar-free gum to stimulate saliva (sucking on sugar-free candies can help, too). Biotene dry mouth gum includes special cavity-fighting chemicals.

Kindness tip: We often don't know what to do to help someone who has cancer. If you know someone who is about to have radiation for head/neck cancer, consider sending them a box full of dry-mouth products.

Things to avoid:

• Air vents (in the car, in your house, drafts, etc…)
• Acid (orange juice, tomato-y things, etc.)
• Alcohol (stings and burns)
• Caffeine (teas, colas, coffee, etc. can be very drying)
• Carbonation (carbonic acid is hard on teeth)
• Sodium (a little is OK, but a lot may burn your tongue)
• Sugar (a little is OK, but a lot is hard on your teeth)
• Vinegar (stings… be careful with salad dressings, ketchup, etc.)

Things to try:

• Brush two or three times a day (using an extra-soft toothbrush)
• Floss once or twice a day
• Herbal tea (it's warm, soothing, not caffeinated, and does not contain the drying tannins found in most orange and black teas)
• Humidity (run a humidifier, especially at night)
• Omega-3 supplements
• Salt-water rinses (some people swear by these)

Swallowing Problems?

If your mouth and throat are dry, swallowing may become difficult. The following foods are generally soft and easy to swallow:

• Applesauce
• Carnation instant breakfast shake
• Cookies or muffins dunked in milk or hot tea (to soften)
• Creamed corn/spinach
• Herbal tea
• Jello
• Low-sodium broth (or mix one can pumpkin puree with a few cups of broth to get something a little thicker and more nutritious)
• Mashed potatoes with gravy
• Milk
• Oatmeal or cream of wheat with milk
• Pancakes drowned in syrup or dunked in a hot beverage (to soften)
• Popsicles/ice cream
• Pudding
• Rice in sauce
• Soft-scrambled eggs
• Yogurt/cottage cheese

You can try pureeing “normal” food, but it can come out really nasty-looking!

As you work up from the super-easy foods listed above, think about how to add moisture. Serve everything with gravy (the jarred stuff is fat-free), slather stuff with butter/jam/mayo, drown it in milk/syrup/BBQ sauce/olive oil, put it in cheese sauce, or soften it up inside a soup or stew. Beans, veggies, dairy, and eggs are all either naturally soft or can be cooked very soft. Fish and oven-roasted chicken is generally soft, too. Take tiny bites! And concentrate on swallowing… don’t talk and swallow simultaneously.

If you’re desperate for something “real”, take a very small bite, chew it to death, put water or milk in your mouth with it, and let it sit a while (to soften) BEFORE you try and swallow. Be prepared to clear your throat (to get it back up if it sticks).

Foods that are dry (bread, chips, pretzels, certain kinds of meat, nuts), sticky (pasta, mashed potatoes without gravy, cheese), or lightweight (lettuce) usually are the most challenging to swallow.

Negotiating a Return To Work, Step Three (Visiting)

When you decide you are nearly ready to return to work after medical leave, first you need to start the conversation, and second, you need to make sure your workspace is ergonomically correct for your new and improved body.

Step 3 involves visiting your workplace, ideally when other people are there (not at the height of lunch hour or the tail end of a Friday). Why? You want to accomplish three things on these visits: 1) clear up/set up your workspace, 2) raise your visibility in the company, and 3) work out the emotional buzz (positive or negative) you feel when you step back into the office.

Clearing Out/Setting Up

I went on medical leave nearly two years ago, and at the time, I was there one day, and gone the next. I was in the midst of a major project and had piles of papers strewn around my office (even on the floor... yikes). I had no idea I would go home on a Wednesday and be unable to return for weeks after that.

Now my office space belongs to someone else, and those piles of paper (and everything else in my office... awards, pictures, plants, etc.) have been hastily dumped into storage boxes and moved into an "empty" office down the hall. I say "empty" because the person who worked in it before me left her own piles of mess behind. So I've visited the office twice (for an hour or two, once a week for two weeks) to recycle all of my now-irrelevant paper files, chuck the previous tenant's stuff, and unpack my treasured personal belongings. I've also wiped down my desk, windowsill, and bookcase to remove months' worth of dust, decaying plant leaves, etc. It will feel better to spend my first day in a nice, fresh office than in one weighed down with everything I left behind.

I used two small, short visits to limit the physical strain involved in this kind of cleaning up and clearing out. Paper is heavy! Reaching down to dust surfaces is still painful for me. So getting this physical task done before my first day not only gives me a nice, sparkling clean office to feel good about, it allows me to space out the pain and fatigue now, while I have more free time to recover. My first day back will be physically demanding no matter what... I don't need to make it worse by starting it with an hour or two of cleaning.

Raising Visibility/Feeling the Vibe

My visits to the office have given me a nice way to quietly announce to the world "Hey, I'm coming back." People have passed my office, seen the light on (and me there), and stopped mid-stride. "I didn't know you were back! Oh good!" has been the general comment. And these encounters have given me a chance to clarify timelines ("I'm not back yet... but will be in two weeks") and essentially market myself to the bosses. If they know I'm coming back soon, they can start lining up projects for me. And being seen in person is still a much more effective way of marketing myself than trying to promote myself through email.

Visiting has also given me a chance to feel out what colleagues think about my part-time schedule... before we're trying to work together on a real project. Most people have been nothing but enthusiastic, but some have been a little apprehensive. I've also picked up a thread of pity and awkwardness from a few people ("Oh, bless your heart, you poor dear"). I like knowing these things ahead of time... it leaves me with fewer surprises on my first day back. And it gives me some time to consider how to persuade the apprehensive and get the pity people to snap out of it.

Releasing the Emotional Buzz of Being Back at Work

The first time I visited my office (to get my ergo assessment done), I was an over-excited nut-job. It was really thrilling to realize my long-held vision of being well enough to get back to work. I had worked so hard and come so far. I was also a little embarrassed and uncomfortable... it is weird, after all, to disappear overnight with health issues, and leave others to pick up the slack. Excitement, embarrassment, and other intense emotions wear me out. By the time I had visited and returned home, I was so tired and in so much pain that it took me two days to recover.

The second time I visited my job (to start cleaning my office), I was much calmer, but still excited. I got a few hugs from old friends, which revved up the excitement even more. So again, by the time I got home, I was a wreck and spent more than a day getting myself back together.

The third time I visited my job (to finish cleaning up my office), it was almost business as usual. My car resumed its ability to auto-pilot me to work. I knew where to park, which door to open, how to use the new security badge. I knew where to find things in the supply cabinet, where the recycling bins are, and how to open the super-heavy bathroom door without killing myself. And my office was starting to feel like mine. I was still excited, but managed to get to work and back without wearing myself out.

By the time I do return to work for real, the embarrassment, excitement, and awkwardness will be nearly gone, and I will be able to concentrate on working. I don't want to be riding an emotional roller-coaster while trying to convince people that I'm reliable and professional!

Going Back to School After Medical Leave?

An important footnote for anyone trying to resume school after medical leave: Your process is probably going to be similar. You have old papers/notebooks to clean out, almost certainly, and a new "office" to set up (a dorm room to move into or quiet corner of your house/apartment to establish). And you could certainly stand to visit campus before you re-enroll. You could visit your academic advisor/counselor, check up on old friends, reacquaint yourself with campus (new buildings seem to pop up overnight, don't they?), touch base with favorite professors, go to the student union and smell the terrible food again, etc. Setting foot on campus and seeing old friends/faves could release a wave of pent-up emotion, too. You should probably ease back into things, giving yourself time to physically and emotionally prepare to be a student again. Perhaps you don't even want to return to your former school right away; would a semester at a local community college give you a chance to test the waters and regain confidence? Work with the disabilities office on campus, your parents, your friends and roomies, etc. to make moving back in and getting back to class as easy on you as possible.

Remove the Dead Baby, Please

I have long felt that the U.S. health care system disrespects human dignity. It focuses on people who are already broken, and patches them up with pills and surgeries before unceremoniously dumping them back on the street. "Treat 'em and street 'em" is no way to deal with real illness. What about preventive treatments that keep us from "breaking" in the first place? What about disease management that focuses on sustainable lifestyle interventions that don't cost a penny? What about supporting the full spectrum of rehabilitation services (including speech, physical, and occupational therapy, and mental health support) so people can completely recover and rejoin society, rather than limping along in chronic pain? So many of us are dumped on the street and left medically homeless, without anywhere to turn for real help.

This month, I had the unfortunate experience of miscarrying. It was my first pregnancy, and my first loss of pregnancy. (I'm batting a thousand, I guess.) I have never had to work so hard in my life to get SOMEONE to help me deal with a medical situation. The frustrations involved have only reinforced my negative opinion of the health system and my burning desire to do something to improve it.

It all started happily enough.

January 1 (ish): I learn that I am pregnant. It's a wonderful surprise. I know that I am what obstetricians call a "high-risk" patient (because of immune system and heart problems). So I promptly call the department of Maternal-Fetal medicine at Johns Hopkins University. I figure that if anyone out there can help me, it will be them. I am stunned (but not surprised) to find that their first available new patient OB appointment is three weeks away, on Jan. 23. I take it, thinking I can afford to wait.

Jan. 14: After 3-4 days of light bleeding, I call the OB's office and ask for help. (Several days of bleeding can mean you're miscarrying. Scary stuff.) "Go to the ER and have it checked out," they say. So I go, at 11 a.m. on a Monday, and spend the next 8 hours getting nowhere and wasting my time, waiting, waiting, waiting, in a small, stuffy, uncomfortable room packed with moms in labor who hadn't gotten a bed yet. By the time I see a student doctor, it's dinnertime and I'm starving and exhausted. The young doc gives me an ultrasound and exam, and then just scares me to death: "I can't find your baby's heartbeat. It might be too early, or something might be wrong. And I can't tell if you're miscarrying... you might be, but we can't tell right now. Get an ultrasound a week from now and see what's going on." This was not helpful. I knew I might be miscarrying, long before I went to the hospital. Rather than lobbying for more information, for access to a better doctor (an attending), etc., I let my feelings of depression and defeat overwhelm me. I give up, go home, and hope for the best.

Jan. 18, AM: I'm still bleeding, and getting very crampy. I call the OB office again and ask for help. Today, I don't feel pregnant (clothes feel loose, appetite is normal), which sets me into a panic. Take an already hormonal pregnant lady and make her afraid she's miscarrying... I was nearly in tears.

The tell me, "Get your primary care doctor to write you an order for an ultrasound to 'check viability'". Gosh, that sounds awful. And why can't they write the order for me? But no. So I call my primary care doc, in tears by now, and ask for the order.

Jan. 18, early PM: I'm having the test, and the ultrasound tech isn't saying a thing. And the room is quiet. No heartbeat to be heard. By now I'm convinced something is seriously wrong. The tech shows the pictures to the radiologist, who discusses the results with my primary care physician but tells me to follow up with my OB. God, can't anyone just tell me what is going on? Long story short, I call the OB to ask for help, and rather than help me, they call my primary care doctor and tell her to take care of things. (While this is all happening, I'm waiting, pacing, crying, wishing the damn phone would ring.) The bad news? My baby is dead, and has been dead for at least 10 days. I need to have a D&C to remove what's left of the baby. And the OB won't help me, because I'm not officially their patient yet (my new-patient OB appointment is still 5 or 6 days in the future). Why won't they help take the dead baby from my womb? Without their help, I can only get the surgery by visiting my local ER. It's a Friday night in one of the more dangerous cities in the U.S. Just great. I know it's going to be a long night.

Jan. 18, late PM: I head to a regional hospital, trying to avoid the Friday-night overload at the urban hospitals. I get there around 7, and am back home by 10, still toting the dead baby in my womb. Won't anyone help me? When I first arrive at the ER, a physician assistant tells me that they "don't normally do D&C's for miscarriages...", they just let nature take care of it. I'm in pain and need help, and this guy is just making me mad. Why won't they help take the dead baby from my womb?

To get to this guy, I first have to get through three levels of registration (intake person, intake nurse, charge nurse). And at every step in the process, I have to tell yet another person why I'm there, and recount my entire medical history to them. Even though I brought a nice, typed, concise medical history form with me... that was stapled to my paperwork and promptly ignored. It's humiliating to have to explain your weird medical history over, and over, and over again. And to struggle to even find the words to explain that you need someone to take out the dead baby that's in your womb. What do you call that dead baby? The remains? What's left? It was gut-wrenching.

By 10 pm, the OB doctor on call tells us to go home. She has numerous emergencies already in line. I will get the surgery the following day, and they will call me in the morning to tell me when to arrive.

Jan. 19: How can you sleep when you know you have a surgery the next day? And you're in physical and emotional pain about the reason for the surgery? So I'm up at 6 am, starving (no food after midnight), waiting for the hospital to call. The magic hour passes, and they haven't called me, of course. No one seems to want to take the dead baby from my womb. I am in tears, calling the hospital's OB surgical team. They have no idea who I am and have not scheduled the surgery. Freaking hell, man. The OB doctor on call finally calls me, and we have to start from scratch. Who am I? What's wrong with me? What procedure do I need done? It's the final straw. I nearly yell at the doctor when she asks me if I've had any previous surgeries. Ha, ha, ha. How much room do you have on your notepad, lady doc? I am so humiliated and embarrassed and feel so ridiculously homeless at this point... no one wants to help me! I'm lost and unable to get the help I need. It's heartbreaking.

I finally have the surgery later in the day, and all goes well. But the frustration and anger lingers on, still.