The little stuff can still get to me

January 31, 2015

Sometimes I’m really calm in the face of annoying problems. I deal with big picture, major issues on a daily basis, so the little stuff just isn’t worth stressing over. Like the new pain I’ve been having recently. It’s been easy to stay calm IMG_20150131_111719over that. But every now and then something gets to me. And today it’s my broken wifi router.

When my router broke last month I was annoying. It was inconvenient. But it’s not like I could do anything about it. And anyway, those things usually only last 2-3 years, and mine was 5 or 6 years old already, so I couldn’t ask for more, right? I threw it out, ordered a new one online, and 2 days later I was plugged in again.

Then today I woke up to a broken router. What the….??? So now I have my computer plugged into the internet. It works. But my phone can’t access wifi, and neither can my TiVo. So I need to avoid using data on my phone, and I can be online or watch tv, but not both. It’s not horrible. It’s truly a first world problem. But it’s getting to me. The router is new, so it’s an avoidable problem, and that irritates me.

Pain and fatigue, not being able to earn a living, relying on others for help with everyday tasks…. it all puts life in perspective. It makes the small stuff matter less. But it doesn’t make us all immune to the small irritations in life. For me, internet access is often my one link to the outside world when I can’t leave the house. TV is my entertainment when I’m too tired to go out, read, or even talk on the phone. I need these things. And I’m pissed they’ve been temporarily taken away.

So please excuse me while I go figure out the router company’s return policy…..

Does the small stuff get to you? What kinds of things get you riled up?

Blizzard days are like chronic illness days, so don’t panic

January 27, 2015

If you’ve looked at the news in the U.S. at all in the last day, you know that the northeast is getting hit with a big blizzard. Even though it’s not unheard of around here, this is of course causing the usual panic. For me, it’s just a Tuesday.


Snowstorm January 2005 – 10 years later and people are still panicking

I wanted to pick up a few groceries yesterday because it was time for my weekly shopping. Everyone else in the long lines was stocking up for The Storm. You see, the idea of being indoors for 2 days due to The Storm causes panic for most people. They suddenly need milk and bread with a kind of desperation that isn’t usually seen on a typical Tuesday. I just don’t get it.

Now, obviously for some people there’s good reason to worry. For example,

  1. If you just moved here and you’ve never been in a snowstorm before, you might be unsure of what to expect.
  2. If you’re physically disabled or otherwise in need of medical attention and rely on assistance from others, you might be worried about people not being able to reach you or vice versa.

That’s about it. I can’t come up with #3. Obviously storms like this can be dangerous. Your house could get flooded if you live near the shore, you might be worried about a flood-related fire, a tree could fall on your house or car. But if you live in an area where these things are likely, then you either know how to prepare, or you know you can’t prepare and you just have to wait it out. The other major danger, of course, is shoveling-related injuries, so I hope that anyone at risk for a heart attack, back strain, or other injury is getting help with their shoveling. And yes, you might lose power. But you should already have plenty of blankets, candles, matches, and bottled water in the house anyway, because that’s just good sense.

Look, we’ve had storms like this many times before. So we know that it will end on Wednesday and by Thursday people will be out and about again. By Friday we’ll have forgotten about The Storm as we prepare for the next one. So why buy a month’s worth of groceries when you’ll only be indoors for 2 days?

I suppose most people don’t like feeling stuck at home. I get that. I don’t like it either. But I know how it really works. You see, I get stuck at home for days at a time on a regular basis. It happened last week. And the week before. And the week before that. And it’s ok.

One big difference is that everyone else is stuck at home too, so you’re not the only one canceling plans. The other big difference is that when you’re stuck at home for a blizzard, you feel ok and can do things. When you’re stuck at home for chronic illness, often you feel like shit and can’t do much beyond stare at a tv screen. Thankfully, I feel ok today, so while I watch the snow outside, I’ll do the kinds of things I think everyone should be doing today. Here are a few ideas for you:

  • Clean up the clutter around the house.
  • Cook.
  • Bake.
  • Have some quiet time with your thoughts.
  • Call a friend you haven’t spoken to in a while. If they’re in the same city and they’re not an emergency worker, chances are good that they’re home too.
  • Read that book you’ve been wanting to read.
  • Work on your creative hobbies – knit, paint, write, etc.
  • Play with your kids and pets (I would if I had any.)
  • Watch a movie.
  • Daydream.
  • Exercise. I’ll do my physical therapy, but you can also do plenty of at-home exercises like lifting weights, sit-ups, push-ups, jumping rope.
  • Finally empty out that email inbox.
  • Take a hot relaxing bubble bath (it’s not my thing, but it might be yours.)
  • Do all of those other things around the house that you say you never have time for.
  • Be incredibly grateful that you’re indoors today and safe.

I do some of these things when my illnesses keep me at home, but many I can’t do. Today is sort of a treat – I’m home *and* I feel somewhat ok!

So the next time you hear someone panicking that The Storm is coming, remember that being stuck at home for a day or two is something many of us go through on a regular basis, and suggest that they relax and enjoy the time at home. And point out that they might want to keep a few bottles of water in a closet all the time, because standing in those long lines is just silly.

The new meaning of “Can I afford that?” when you live on SSDI

January 23, 2015

A friend just emailed me about a good deal on something I’d like to buy. But can I afford the $72 for 20120809_220808something that I don’t really need? Yes and no.

I’m one of the lucky ones. I was raised in a middle class family. When I was born my parents started a college fund, and I graduated from school without any debt. Actually, I had money in the bank because I’d learned to save what I earned from my various jobs. I was taught to never spend more than you had. Credit cards were to be paid off in full every month. I worked all through graduate school and never paid a dime in tuition. I had plenty of problems in life, but I never had debt. I feel so fortunate for that, I am so thankful for the good money lessons my parents taught me.

So when I had to leave my job due to disability, I had savings. Many people don’t. And I managed to get SSDI. Many people don’t. I am so grateful for all of that.

But for the first time in my life, money began to stress me out when I left my job. From the time I started babysitting at age 12, I’d always worked. I’d always had a way to earn money. Sometimes I worked part time, sometimes only on school vacations, but I always worked. Several years back I quit a job where I was unhappy and it was my first real break, but I had planned for it, I had savings, and I was highly employable, so I knew that I could get a job whenever I wanted and needed it. After some time off, I went back to work. I never earned a high salary, but I was frugal and I saved.

When I became too sick to work, though, it was all different. Not having the option of going back to work was stressful. There would be no way to replenish what I spent. That savings account is a huge comfort, but it won’t last forever. And then what?

SSDI is helpful, but it’s not enough. It almost covers my rent. Almost. I have food stamps that almost pay for my groceries. Almost. The extra rent and grocery costs are about $100 every month out of my savings account. Every single purchase beyond my rent comes out of my savings account. Electricity, gas for cooking, car insurance, gas for the car, phone, internet, very limited entertainment, and occasional clothing all come out of my savings account. And medical expenses. Oh, the medical expenses.

Each time I consider if I can afford something, I know that technically I can. Technically I have the money sitting in my savings account. But I also see those savings going down every month. I don’t know if I’ll ever be able to earn more than I spend. So should I save that $72 for the future? And what about the present? There are doctors and medical tests that I think might help but that I’m putting off because they aren’t covered by insurance. Of course, those are hundreds or thousands of dollars, not just $72, but it’s the same idea. If I’m not pulling money out of savings for those doctors and tests, should I really do it for something more frivolous? And if I really wanted to pull money out of savings for something fun, I’d get a pet. But I can’t pull money out for those big things, so getting something little might be fun and comforting. Or I could spend even less and get something else I’d really like, like a new sweater. My clothes are all old and out of style and starting to get threadbare. But even if it was only $30, I would still have to take that money out of savings. And that brings me back to the start of my reasoning: technically I can afford it, but I probably shouldn’t.

Each little “just this once” adds up. $72 here, $15 there, and my savings account keeps shrinking. I’m so grateful to have that account. I want to make it last as long as possible.

Then again, maybe I’ll just take $1 out of savings and go buy a lottery ticket. Then maybe I could afford it all.

What would it look like if healthcare worked the way I wanted it to?

January 19, 2015

I write a lot about all of the small things that I think are wrong with the system and the many small improvements I’d like to see. Those are all fine on a small scale, but what about the big picture? I decided to mentally design my own fictional healthcare system. For this my 500th (!!) post, I’m laying out just a few ideas for a system that I would 1-19-2015 5-44-01 PMactually want to be a part of. But I want your input to help make this fictional system even better! So please add your own ideas in the comments!

Now, I know that none if this is realistic right now politically, but wouldn’t it be nice if……?

To start, Ms. Rants’ Healthcare System (MRHS) is a system that would put the patient first. The goal would be to maintain health and prevent illness. Let’s say that again, because that’s a big fucking deal, and something that most of us don’t experience right now.

The system would put the patient first.

The goal would be to maintain health and prevent illness.

Oh my, I’m already light-headed with excitement! Ok, so we have our goal in place. Next up, let’s make sure everyone can access it, and I do mean everyone. Sure, someone has to pay for this, but I’m thinking there would either be a sliding scale or it would be paid for through taxes. But every person would have access to MRHS, regardless of income, assets, health, sexual orientation, gender identity, race, religion, citizenship status, etc.

And since we’re talking about access, that means that every office would have the following:

  • Accessible doors, chairs, bathrooms, examining tables, and everything else for all (including those who are able-bodied, in a wheelchair, overweight, blind, etc.)
  • Well-trained staff to understand and assist with the above.
  • Translators. The MRHS would have a staff of translators all over the world, all accessible via online video. When needed, translators would also be available in person whenever possible. All documents would be available in any language needed by the patient.
  • Medical personnel available for home visits for those patients who are unable to leave their homes.
  • Appointments in the morning, afternoon, and evening as well as weekend appointments. For the rare time the office is closed, patients can go to their local hospital for no charge.
  • Reserved appointment times for those who need last minute appointments not only for emergencies, but because they can not schedule in advance. For example, a retail worker may not know their work schedule until a few days in advance, so they need the flexibility to move appointments.

Of course, MRHS would also provide transportation to appointments for those who need it.

Now let’s talk about medical records. These would be electronic and available to every medical professional in every practice. I have spoken to programmer friends who work on these kinds of things so I know it’s not realistic right now, but this is my dream, and I’m choosing to dream about a world where this is possible. Right now, my Beth Israel hospital records can’t be read by my doctor at Brigham & Women’s Hospital unless I print them out and carry them with me. In MRHS, though, every doctor would use the same system. Everyone would be connected. But it wouldn’t only be the doctors who were connected: the patient would also be connected! The patient (or in the case of a child, the patient’s guardian) would approve each doctor who would see their record, and could rescind that permission at any time. The patient would also be able to make notes in their record, pointing out discrepancies between what they said/feel/experienced and what the doctor wrote. Of course, for this to work, every patient would need internet access and a computer, but of course in the MRHS dream that’s the reality, so that each patient can also participate in online support groups and do their own medical research. Training to use the computer would also be provided.

Of course, since each patient is being given the opportunity to be an active participant in their own care, the notes they add to their electronic record will be read and responded to in a timely manner. Patients can email every doctor, nurse, physician’s assistant, and other medical professional. Patients can also enter requests for certain tests and explain their reasoning as well as request changes in medications. Medical professionals will not receive any incentives or disincentives regarding tests or treatments, so all tests will be ordered unless there is a reason not to, and all treatments will be chosen based on their likelihood of success for the patient.

All tests and medications will be covered 100% by MRHS, of course. In addition, any over-the-counter item prescribed by a doctor will also be covered. For example, the multivitamins and vitamin D that my doctors now want me to take would be covered.

And it should go without saying that all accredited medical professionals will be covered. That includes doctors of all specialties, naturopaths, acupuncturists, chiropractors, and every other medical professional. If they’ve successfully completed their training, registered, and haven’t done anything really wrong, they’ll be covered. Simple.

Now, we haven’t touched yet on what it means for a medical professional to complete their training. You see, the MRHS has a different set of criteria for medical professionals than the current systems. Each medical professional will have to go through schooling and then follow up with continuing education, as they do now in many systems, but the content of that training will be different. Yes, they will be taught biology, etc. But first they will be taught to respect patients. They will consider a patient’s experience and intuition. They will learn not to dismiss a patient’s reported symptoms simply because they are unlikely or unusual. They will spend time overnight in hospitals, being treated as if they are ill, being taken care of and woken up for tests, etc. They will experience waiting rooms. They will go to offices and sit in waiting rooms, then report their symptoms to a strange person and see what they say. Nothing can replicate the pain, fear, and uncertainty that many patients face, but it’s a start.

They will focus not only on curing illness, but on maintaining health.

They will be trained to treat all patients equally, eliminating all racism, sexism, homophobia, biphobia, transphobia, anti-semitism, islamophobia…. and all other prejudices. They will be taught how to truly listen to patients. Medical professionals across specialties will team up when necessary. A rheumatologist, neurologist, and naturopath might all consult with one another about a particular patient or about a series of patients who seem to cross their specialties. Medical professionals will never lie to patients, even if they think it is in the patient’s “best interest.” They will offer patients all potential testing and treatment options and will guide but never decide for the patient. They will take their time with each patient and be sure the patient fully understands everything and that all questions are answered.

In short, they will learn to put the patient and the patient’s health first.

In the MRHS system, pharmaceutical companies will have no direct contact with medical professionals. Instead, a web site will be regularly updated. It will list every medication. New medications will be marked as new. It will include study results, including effectiveness and side effects. It will include comments by prescribers. When prescribers have questions about a medication, they will post their question to a message board on the site. Other prescribers will answer. Pharma reps can also answer, but their screen names will show they are pharma reps. There will be no more “conferences” for specific medications paid for by the pharma companies. Instead, medications will only be discussed at medical conferences. Pharma companies won’t attend these conferences. Prescribers will present on medications just like they present on medical equipment and other treatments, studies, observations of patients, etc. They will not be paid for this in cash, meals, or any other compensation.

I know this doesn’t cover everything, but isn’t it a fantastic beginning? I would love to be a patient in this system!

I realize that at some point my perspective changed. I started this article by writing about what “would” happen, and at some point “would” changed to “will.” Normally I would go back and change that so that it’s consistent, but I like it the way it is. Right now MRHS is a dream, but I’d like us all to start thinking about it as a potential reality. If we don’t dream big, it will never happen. I’d rather dream big.

Ok, your turn: what would you change about MRHS? What did I miss? Please add your thoughts in the comments! Let’s see just how great we can make this!

And on a side note, thanks so much for sticking with me. I can’t believe this is my 500th post! How did that happen?

Could a new pain be isolated?

January 14, 2015

Sitting at my computer has become more painful, now that I can’t find a comfortable position for my foot. I didn’t fall or trip or do anything else to it, but one day it started hurting. Usually my pain is in joints or in more “common” areas like my back and neck. The top of my foot was a new one. So I waited for it to away.

But it didn’t go away. I meant to mention it to my new podiatrist when I went to get examined for new orthodics, but I was so excited about the orthodics that I forgot to mention it. When I went to pick up the new orthodics 2 weeks later, I still had the pain, and this time I remembered to mention it. She said that the area I’m pointing is actually related to joint. Immediately, alarm bells went off in my mind. A joint?? Could I really have a new joint acting up?? She explained that there was a ligament there that had probably gotten stretched too far some how. She said it should fix itself within a few weeks, but it had already been a few weeks. The next step would be to immobilize the foot. Um, no thanks! Well ok, I might have. But first she wants to see if the new orthodics help. I sure hope they do!

But in the meantime, I’m left to wonder if this new problem is isolated or if it’s part of my connective tissue issues. It’s possible that it’s isolated, right? Right? I mean, if an otherwise-healthy person can have this problem, then I can too, right? Right?

But it’s also possible, even likely, that it’s an extension of the pain that I already have in my wrists, toes, knees, fingers…. Every few years I get pain in a new set of joints and it doesn’t go away. It can’t be “healed.” I haven’t had any new joints join the list in several years so I’ve been lulled into thinking this might be it. But I should know better. Despite all of my hard work and all of my improvements, I still have the same autoimmune diseases, whatever they are, that caused the problems in the first place. I’ve always assumed that sooner or later all of my joints would succumb to this. I just hoped it would be later rather than sooner. And when I pictured it, I didn’t picture this particular spot of pain that I never knew existed in relation to a joint.

This isn’t the end of the world. Actually, in my world, it’s relatively minor. The pain isn’t actually what’s bothering me at this particular moment. What’s bothering me is that I don’t know how to proceed. If the orthodics don’t help (and with my luck, they probably won’t) then should I bother to immobilize the foot? That wouldn’t be good – I wouldn’t be able to wear my new orthodics, it would throw off my balance, it would probably aggravate my hip, and it would be a real bitch to deal with in the cold, snow, and ice that come with Boston winters. And it probably wouldn’t do a damn bit of good. But then again, if there’s even the tiniest chance that it could help, that I might be preventing future pain, don’t I owe it to my future self to try?

Or would I just be deluding myself by thinking there was a chance this could possibly be an isolated condition?

Sadly, it’s a situation that we with chronic illness have to deal with far too often. Every pain, every extra-tired day, every ear infection or sore throat or sneeze or…. we have to question it all. My foot is simply today’s question.

Vagina vagina vagina

January 9, 2015

I ate an incredible chocolate chip cookie today. It gave me a lot of pleasure. It was just delightful.

I’ll get back to the cookie in a bit.

Like many people, I have two hands, two eyes, a mouth, a liver, two lungs, a heart, two legs, and many other body parts including, yes, a vagina. So if I can talk to a doctor, a friend, an acquaintance, or a stranger about pain in one of those other body parts, why is it considered taboo to discuss pain in my vagina or any other body part involved in procreation?

I don’t personally have vaginal pain (aside from the occasional yeast infection, etc.) but if we discussed these things more openly, it wouldn’t have taken me years to find out that the blood clots I got with my period weren’t normal. And while I don’t happen to have pain in my vagina, vulva, or related areas, plenty of others do.

The taboo seems to trace back to pleasure. Apparently, the problem with discussing vaginas and penises has to do with the pleasure we get from them. I got a lot of pleasure from that cookie this afternoon, yet it isn’t socially inappropriate for me to talk about my mouth. There’s just no logic to it. Apparently sexual pleasure is to be shamed while all other pleasure is acceptable, at least in my culture. But who does that help? I see absolutely no reason why that should be the case.

Many people of all genders express discomfort when discussing genitalia. I don’t get it. Every single one of us is here as the result of sexual organs. Think about it: would you exist if no one on the planet had a uterus? The vast majority of us are here because of a penis and a vagina, even if they never came into contact with one another. It amazes me how many men think vaginas are only for sex; unless they were born through C-section, they once came out of one!

Today I learned that a friend has vaginal pain. She had never mentioned it before, referring only to more socially accepted forms of chronic pain. She said she’d probably never discuss it again. But why should that be? And the topic of how pain in other parts of the body affects sex really needs to be a post all its own. If you have chronic pain, has your doctor ever asked if it’s had an impact on your sex life? Mine haven’t. But they should have. Every single one of them (in the appropriate specialties) should have!

So I’m saying it loud and proud: I love my vagina! It is as important a part of my body as any other (and more than some…. I’d give up an appendix or tonsils before I’d give up my vagina!) If you have pain or other symptoms in any body part that’s taboo to discuss, feel free to share it here. I will give it the respect it deserves, and I suspect most of my regular readers will, too. After all, it is as much a part of your body as your shoulder, your skin, and your kidney. So why not discuss it?

Which is why I titled this post the way I did. Let’s start with at least being able to say the word itself!

Dear doctor: Those symptoms you ignored were signs of a real problem

January 7, 2015

I don’t expect every doctor to know everything there is to know about medicine and health. I don’t even expect them to know everything there is to know in their own specialty. But when I present the same symptom to many doctors, and it’s common enough to be written on one of those silly internet lists, shouldn’t at least ONE DOCTOR have known what was going on??? Or at the very least, they shouldn’t have brushed it off!

Back in my mid-20s my fingernails began to curve. Before that they were pretty typical nails, I think. Then suddenly, they curved downwards as they got longer. The first and middle fingers were the worst on each hand. I just cut them recently so I can’t take a photo today, but trust me on this; it was really noticeable.

I didn’t assume there was a major, life altering problem, but it definitely wasn’t normal, so I showed my doctor. He brushed it off, saying it was nothing. I showed my next doctor after him. Same response. I showed many doctors, both internists and specialists. Some said it was nothing. Others weren’t sure, but said I shouldn’t worry. Not a single one suggested that maybe it should be investigated. A friend said it could be a vitamin deficiency of some sort. My doctor didn’t agree. So what could I do about it? Looking things up online wasn’t so easy just a few short years ago, and I had bigger health problems to worry about.

I came across this short list, What Your Hands Can Reveal About Your Health, a few months ago, and I haven’t been able to forget about it. That’s because it was so clear about this problem that none of my doctors addressed:

Curved nails

Soft nails that curve likes spoons can be a sign of iron-deficiency anemia, says Dr.Leffell. The condition, called koilonychias, can be due to such malnutrition, gastrointestinal blood loss, worms, gastrointestinal malignancy, or celiac disease. See your internist who can check your iron levels.

Now, obviously my doctors screwed up in other ways. I had low ferritin levels for many years, but none of my doctors addressed it. It wasn’t until I sent myself to a hematologist that I finally received the iron infusions that got my levels up to where they should be. And I had symptoms of Celiac Disease for many years, but doctors kept telling me it was IBS, or IBS and reflux, or IBS and stress. Nothing improved until I put myself on a gluten-free diet. So really, the finger nails were just one more symptom that was ignored.

But why were they ignored?

I will never know why multiple doctors chose to brush off my concerns about very real symptoms of very real illnesses. I’ll never know if other patients were similarly dismissed. But I do know that an injustice was done.

I am so grateful that I took my health into my own hands. It’s not easy, and sometimes I forget to fight back, but I’m trying. And every time I come across another symptom that my doctors overlooked or brushed off, it’s a reminder that it is worth every bit of effort I expend to continue pursuing the treatments that believe are best. From now on, I choose to see my curved fingernails as a reminder that I need to make my own decisions about what is relevant to my health. I won’t be brushed off again.

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