Hiatus

It is hard to believe that the last time I wrote on this blog is over a year ago. When my computer broke, I thought it would be a quick fix but it turned into a long protracted ordeal. I no sooner got it fixed but my daughter's cat decided that it was time to test the laws of gravity. Surprise!


Luke, the gravity seeking cat.

The laws of gravity remain firmly entrenched on earth. What goes up must come down. And, what went down was my computer. So in this case a computer crash was really a computer crash.

So now here I sit with my new Surface 2. It is a tablet. It is a laptop. It converts back and forth. It can take a licking and keep on ticking. I should know, as my dog Dixie has licked it repeatedly (In case you don't remember she has obsessive compulsive disorder, as a result when stressed she will lick I concentric circles).

Dixie

Well, since I was last on I became a new mom to a bouncing baby boy. I was hoping to adopt but he became available unexpectedly through a failed adoption (isn't that sad). So I was able to adopt this beautiful boy last February. He is the love of my life. His name is Kubota. More about him next time; however, since a picture is worth a thousand words let me introduce you to my son...


My  service dog, Kubota.

IV Catheter Broken Off and Computer Screen Broken

The theme of this past week has been broken. When I was at the hospital the nurse that placed the IV in my arm used the wrong technique; she sheared off the tip of the IV catheter and it was left in my arm. I discovered this when a small piece came out on Sunday. 

A piece of IV catheter in the body that has broken off can cause an embolus. This can cause a stroke or heart pulmonary emboli.  In other words, finding this piece of IV catheter is a medical emergency if a piece is left in the vein. I didn't think this was the case but still needed reported to the hospital that was responsible for originally inserting the IV. It also meant a trip to the emergency room. Sunday afternoon was spent in the emergency room. To say my treatment there was poor is an understatement. If I didn't need to specifically be at this particular ER I would have walked out. I'll be ranting about the treatment of patients that are on antidepressants in the future. The bottom line was that my IV catheter broke off in my arm.

The other thing that happened this week was that my computer had an accident. I accidently dropped my laptop and now reading the top part of the screen is impossible. So I'm on an old laptop that tends not to work well. I call it my Dell Hell Laptop. Anyway, I've not to been on the net very much next week. I will try to be back to this blog more in the future. 

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Exercise Makes a Difference When You are Chronically Ill..It Is Working For Me

From YouTube with Winnie the Pooh doing his stoutness exercises

Sometimes when I look around at the others at the gym, all I see in front of me are images of live versions of Barbie and Ken dolls. Me, I feel like Winnie the Pooh doing his stoutness exercises. I feel fat compared to the beautiful people around me. I still have baby fat on me. For those of you that don’t know what that is, it is fat that has never left after you have had babies. That’s pretty sad as my baby will soon be 25.

Let’s face it most of the people at the gym are the beautiful people. They are young; they are fit and trim. The good and the bad news are most of them got fit and trim through exercise. That means it is possible for other people to get fit too.

I’m middle aged woman who is overweight and I walk with a cane. Just walking with a cane alone makes me feel like I am 20 years older than I am. I haven’t been able to exercise because until recently they didn’t know why I was having so much pain (Mixed Connective Tissue Disorder) and the need for multiple operations. If you are having chronic pain and the doctors don’t know why, it is almost impossible to get that pain controlled so that you can do things. Having pain takes an enormous amount of energy. Medications and lack of Vitamin D caused me to gain mega amounts of weight which not only made it difficult to exercise but also embarrassing.

Yes, there are some other ancient relics around the gym but when I go there are few to no middle age persons there (That is because they are productive and have jobs). I’m disabled and well and I won’t say I don’t have a job because I do; my job is to work on improving my health.

However, a strange thing happened to me at the gym. I was having trouble swimming due to my knees. I discovered to my chagrin that it was my arms that were mainly propelling me through the water and not my legs. After doing a hard workout on my legs, I went to the hot tube. There I met a delightful man from Russia who was slightly older than I am. Let’s call him Sergei. We exchanged pleasantries and the reasons we were at the gym. He was there because he was a trucker with back pain. I told him I had an auto immune disease and was “rehabbing my joints and trying to slim down and trim down”. He said, “Why you need to slim down. You are beautiful. Women like you are considered most beautiful in Russia”. We talked some more and then I left for a cool down crossing down the length of the pool.

I must admit, I have been feeling better physically because of the exercise that I have been getting. I have noticed my legs are getting thinner. My waist is a bit smaller. But the biggest difference is that I am having less pain from my Mixed Connective Tissue Disease, less depression due to the happy healthy hormones released with exercise (endorphins), and fewer migraines.

Ok, maybe there won’t be a Sergei at the pool commenting on my looks every day nor would I want there to be. That would just be creepy. But maybe, just maybe, the doctors are right (ok, miracles happen. They can be right once in a while just like the weatherman). Exercise is good for those who are chronically ill.

Today, I took a real look in the mirror (the thing I’ve always been afraid I’d crack) because Sergei’s comments gave me the confidence to do so. I gave myself an accurate appraisal and I even started to feel better about my shape. Yes, exercise does pay off. I’m even looking at going to my next session. Wait a minute, did I really say that? I have to get my head examine.

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Sexual Assault Survivors Don't Want to Go For Pelvic Exams...So I Don't Want To

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I am a rape and incest survivor and a RN. I’ve helped with thousands of pelvic exams and hundreds of deliveries. To a nurse or health care provider, looking at female anatomy, or nether regions (or whatever you want to call your vulva, cervix, etc…) gives us as much of a thrill as looking at a set of  tonsils… boring. And here you thought your anatomy might be something special. WRONG . (I've even seen a woman with two uteruses... just what is the plural of uterus..oh well, double the amount to look at...darn more paper work and, yes, still boring).

The only thing exciting about a vaginal exam is when a baby is about to be born; frankly, it is all about checking on where that little one is at (nothing personal ladies … we want that kiddo out almost as much as you do... it is the paperwork... we nurses hate the paperwork).  However, for the incest or rape survivor a pelvic exam is a BIG DEAL. I know it is. I’ve put mine off my pelvic exam for over 10 years. This is not the healthy thing to do.

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Why? If I know so much about pelvic exams, why did I put mine off? That’s a good question. It isn’t really about the health care providers. It is about trust. It is about trusting a stranger not to hurt me while I’m in a vulnerable position. I don't want foreign objects shoved into me. I don't want more than one person in the room. I sure as heck don't want student observers! It certainly isn't fear of the unknown, as I've helped with these exams. 

I’m still in therapy so I’ve talked about it to my therapist about the upcoming exam. 

Lucky therapist... I'm sure a male therapist just loves talking about gynecological exams...Any way, my therapist continues to remind me that this is my choice and I am in control. I shouldn’t let those who have hurt me in the past prevent me from staying healthy now.I'm also afraid that I'm going to have a flashback in the middle of the exam. To say that would not be good would be the understatement of the year. Well, I guess I'll have to tell the doctor to wear a football helmet in case I start pounding on her head. At least I have a month to figure out how to deal with in case of flashback issue. I think that is my primary worry at present.  However, I’m still worried about the exam that is coming up next month.

I decided to do some research online hoping to find a survivor that had a pelvic that was feeling the angst over the appointment that I am feeling now and survived her appointment. Luckily, I found one so I’ve re-posted her article here. I hope this helps you as it did me. I’ll let you know how mine goes after I have it mid-November.

Don’t forget, if you get your period to reschedule your exam.  If you have trouble figuring out when your period is due, use the period calculator to help you.

How to Prepare for a Pelvic Exam if You’re a Sexual Assault Survivor

BY CHANTAL ALEXANDRA

There are many online resources about pelvic exams, but they're not always reassuring. As a woman who was raped many years ago I went online to find reassurance, and what I read had the opposite effect. But I'm happy to say that the exam was fine, I didn't notice any discomfort, there was no pain and I felt respected. Here's how I prepared for it.

I should start off by saying that I went through successful therapy after being raped and I have a normal sex life. But the thought of getting a pelvic exam was horrifying. I dreaded the idea of trusting a stranger not to hurt me while I was in a position that doesn't inspire a sense of control. I cried every day during the week leading up to the appointment.

The key to a good pelvic exam is communication. The very first thing you should do when you schedule the exam is to let the people know you have been raped or assaulted. These people know damn well what this means, so don't be worried about being judged in any way. Telling them about your history will allow them to schedule in more time for you. You can use so that time to ask questions and relax, while they will have the time to be extra gentle and careful. When I arrived at the center I also reminded them again of my history. If you don't like to talk about it, then slip them a written note.

Try and figure out for yourself if there are any particular things you are worried or scared about. Is it the thought of pain? Are you scared of being in the vulnerable position? Are you afraid you are not in control and can't make the exam stop once it starts? These concerns will probably depend on your history and are rather personal, so only you can try to determine what prospect scared you the most.

Don't let the exam begin until you raise these issues with your physician and talk about it. I decided that I would not get into the chair and be in a vulnerable position until I felt confident that the physician understood me. For me there were two major concerns: pain, and the fear that the physician wouldn't stop when I told them to. I wrote my concerns down on paper so that I wouldn't forget if I panicked.

To minimalize the possibility of pain I decided that for every stage the physician should use lubricant — no lube, no exam. There is no medical reason lubricant cannot be used. Lube is standard in some health centers but not all, so ask for it if this worries you. There are also differently sized speculums, so ask for a smaller size if you think you need it.

The most loaded question emotionally was whether the physician would stop when I asked her to. I didn't like to ask or think about such a situation. I'm happy I did ask though, because her answer was brilliant. She answered that I was in total control and she would stop as soon as I asked her to. She said the position might not feel empowering, but that if I said stop she would listen immediately and the exam would end.

Another concern I had was the chair, especially the stirrups. I asked the physician whether I had to use them. She told me I didn't have to, but it would help me achieve a comfortable position that would make her job easier, and the examination more comfortable for me. I translated ‘more comfortable' as ‘less chance of pain,' and I was still more worried about the pain than the weird position. I was sure she would stop the exam when I asked her, so I decided I was okay with the stirrups. If they would mean less discomfort I'd happily use them. She also told me how to sit in the chair, and where I held tension. Next time I will definitely ask the physician how to lay down/sit well. She also told me what she was about to do, before she actually did it. This felt very empowering for me and next time I will ask my physician to do the same.

If you have a physician who doesn't address your concerns, which seems to rush you and doesn't seem to work with you, then find another physician. There will be plenty who will understand that with a history of assault you may need a bit more time and you will have concerns specific to you, and they will be happy to reassure you. Because I told them about my history and how nervous I was, they took precautions to make me feel more in control and less scared even without me asking. For instance, they also covered up the whole stack of speculums.

So what did I actually feel during the exam? Very little I didn't feel poked or prodded. The only poking they do is on your stomach at one point and that just feels silly. The first part of the exam uses a speculum. They come in various sized because every woman is different. Remember, you can ask your physician to start out with a smaller sized one. I didn't feel a thing when the physician placed the speculum inside me. It was a little cold, but that was all. When folded these things are TINY, smaller in width than a finger or a sextoy. The speculum does open, but not very far. When I finally sensed something going on, it was already over. I heard a metal sound and that was it. It was a split second between ‘hey I actually feel something' and ‘oh it’s gone and now she tells me it's placed.'

When the exam reaches this stage they will take cells from your cervix. The physician said I might feel something like a menstrual cramp. I would describe it as a twinge — seriously, just a twinge. It's a little strange, like butterflies in your stomach, but not painful nor uncomfortable.

After the speculum adventure it's time for the bimanual exam where they use their fingers. Again, thanks to lubricant and the professional aim and angle of the physician, I did not notice much. No pain, no discomfort. The only part I noticed was when she pushed my stomach, three short pushes. I just looked puzzled, wondering if that was it. If you do feel pain, you should let your physician know. You are there for a health check, so if you feel pain you should tell them. For me this was the last part of the exam. The whole thing was comfortable and respectful, which is what everyone deserves. Remember, if your physician is not sympathetic to your needs, don't do the exam. Don't convince yourself to try it if you don't trust your physician. Find another one who will help you safeguard your health — physical and mental.

Coping with Cancer

As I said in an earlier post, one of my friends was diagnosed with cancer. My sister is also dealing with breast and thyroid cancer. I've been a bit overwhelmed of late. Monday of this week, I went for a screening colonoscopy. So I've been a tad busy. Because of this, I decided it would be a good week to reprint some great articles on cancer. This is the third in the series.

Shock and Awe: The First Psychological Phase of Coping with Cancer

Cancer Series III: the first phase of coping

Published on May 31, 2011 by Mindy Greenstein, Ph.D. in The Flip Side

I have always known that at last I would take this road. 
But yesterday, I did not know it would be today.
- Ariwara Narihara, 9^th century Japan

We all live with an expiration date that we try to ignore, while creating a satisfying life in the meantime.  Just before a cancer diagnosis, we each live our lives, minding our own business, as mechanics, secretaries, stay-at-home parents, dentists, or even psycho-oncologists.  Suddenly, often through an event as trivial as a pain in our side or a cold that won't go away or a tiny lump, the entire basis of our daily existence comes into question.  All the existential fears we hide in the back of our heads come screeching to the front. Even someone like me-whose work has revolved around cancer-is taken aback by the abrupt switch in her identity.  Learning how to cope is often a painful period of trial and error, as we slowly learn what makes us feel better and what makes us feel worse.

The hallmark experience of this phase is the sense of being overwhelmed by an alien entity, and the flood of I don't know's.  As time passes and more information is gleaned, the uncertainties will narrow.  But between the initial diagnosis and the final pathology report, everything is open to question.  How bad is it?  What's the chance I'll die?  When?  When will I know?  Will I need chemotherapy?  Surgery?  Radiation?  Will I be bald?  Nauseated?  Too sick to work, or take care of my kids?   Do I want to trust the first doctor who diagnoses me, or do I shop around?  For a few weeks, the answer to all these questions will be "I don't know," making it difficult to know how to cope.   Someone with an 85% chance of cure might cope differently than someone with a 10% chance.

On top of all those questions is another crucial set of questions—whether to tell our friends, or whom to tell, or how to tell it.  This is a complicated business, because how other people react can have profound effects on our ability to cope. These issues arise even among patients themselves, for example, in the envy we can feel for fellow patients with better odds than ours. Or the feeling that I had no right to complain about my stage II potentially curable cancer to my stage IV friend, who would have to be in treatment for the rest of her life. I personally found talking to other patients the most helpful, despite the complications.  Those who were many years past treatment helped me imagine a day when I might be in their shoes.  And those who'd only recently finished treatment or were still there helped me feel less alone and alienated.  I was even comforted by the memory of former patients of mine, whether or not they survived their illnesses. Because cancer patients—and patients of all manner of catastrophic illness—fight two separate battles: the battle to survive, and the one to have a meaningful life with joy and purpose, regardless of how the first battle goes. Though this was a club I never wanted to belong to, I knew I was in the best of company.

Underlying all these issues is the reality-denial continuum that marks our general personality styles.  Some of us want as much information as possible, while others want to know only the bare minimum required to make informed decisions.  What makes things more complicated is that the realists and deniers need to learn to coexist.  Often, the deniers think the realists are too negative, while the realists think the deniers are intellectually immature.  Over time, we need to learn to respect each others' styles.  Though a card-carrying Realist myself, I learned a surprising mantra from my supervisors when I started working in medical psychology-unless it interferes with treatment, denial can be your best friend.  And while I would make a full-time job of learning about my illness and my options, I came to respect the place denial had in helping people enjoy themselves, even in the face of what seemed like insurmountable odds.

Finally, this shock and awe period profoundly affects our experience of time.  As our future is threatened and every minute seems more precious than it had been before, time itself feels as if it's speeding up.  We fear we won't have enough time to accomplish all the things we want to do; we might not even have known until this threat what those things were. All we know, while we run around consulting doctors and submitting our bodies to more tests and scans, is that we want this cancer out of our bodies yesterday.  On the other hand, when it comes to waiting for results of those examinations and scans and biopsies, and finding out whether we can be cured or how nasty our treatment might be - time can move agonizingly slowly.

And when those results finally come back, we have to make decisions, finding hope where we can in the face of all the uncertainties. 

Open up and say AH... Colonoscopy time

"Open up and say, "Ah" isn’t what the doctor will be said when he approaches me.  Actually, I better not be hearing him and best be asleep when he comes near me with that THING. I don’t want to hear rumors of comments about “black holes” or that “I’m a one-eyed-brown-Susan”, if you get my drift. because... joy of joys and wonder of wonders I’m over 50. If you’re over 50, boys and girls you all know what that means…yuppers…that dreadful day of the colonoscopy happened this morning. What fun!  Actually, the worst day was yesterday…the prep…but that isn’t for polite conversation. Really it wasn't as bad as I expected. So rather than discuss it let’s just let the following cartoon speak for us…

Now, I don't want you to miss out on all the fun. All joking aside, this test can catch cancer in the very early stage when it is just a polyp. At that stage, it is curable. So the question is, "To be or not to be"... Seriously, that is the question. If you want to make sure you're going to be around for a while, go get checked out by a colonoscopy if your over 50. Really, the prep is the worst. It tastes a bit like over salted cherry water.

I was lucky. The doctor didn't find anything. I was out for most of the procedure. I woke up once or twice during the scope; I asked if they found anything. I was told, "No" then I went back to sleep. Unfortunately for me, because of family history I will have to have another one in 5 years. I won't be fearing the prep (really, I heard horror stories...); all the stories of how bad the prep was were exaggerated greatly. Don't let the stories keep you away from getting a harmless test to help you stay healthy.  

What not to say to a cancer patient

This is part 2 of the article from author Dr. Mindy Greenstein, on what not to say to a cancer patient.

Cancer Series II: The First Question, or, What Not to Say to a Cancer Patient

For cancer patients, is hell really other people?

Published on May 18, 2011 by Mindy Greenstein, Ph.D. in The Flip Side

 If you read my last cancer blog (What Do I Say When Someone I Care About Gets Cancer), you probably know that I won't actually tell you what not to say to a cancer patient.  That's because words without context are meaningless.  "You'll be fine" may feel heartening one day, and dismissive another.  For me, though, there was one question I came to loathe, not the question itself but what it represented. 

I didn't loathe it the first time it was asked, or even the second, maybe even the third.   But by the time I realized that this was going to be the first thing every single person said to me upon learning of my breast cancer diagnosis, I often started to cringe as soon as I heard the words starting to form.

            

So what was so important, it was the first thing everyone had to know?  It was this:

           

Does it run in your family? 

Seems innocuous enough.  Let's unpack it, to understand why it came to bother me so much.  A wise teacher in graduate school was fond of telling us burgeoning therapists,  "It's not what you say to patients that's important, it's what you say next."  Perhaps that's why my reflexive cringe response quickly dissipated when a couple of my friends followed up with an explanation for their question: if my answer had been yes, it does run in my family (it doesn't), they would have made sure to suggest I have a genetic workup in order to see if I had the BRCA gene mutation, which would have affected my treatment significantly.

 So why was everyone asking?  Perhaps a typical exchange holds a clue:

Friend: Does it run in your family?  It doesn't in mine.

Me: Not in mine either.

Friend: Really?  That's surprising.

Me: Actually, the vast majority of breast cancer is random, with  no significant  family history. (usually evokes a shocked response)

Friend: They found it on your mammogram, right? (this was the  second question almost 75%  of the time) I just had a clean  mammogram X months ago.

Me: Actually, no. I had a clean mammogram just a few months ago, and a clean gynecology  exam only a few weeks ago.  Mammograms can miss 1 out of 5 breast cancers.  I found it on a self exam.

Friend: What's your doctor's name?

Me:  It's actually not the doctor's fault. I have a rarer kind called lobular carcinoma, that's  hard to catch because it doesn't grow in lumps. It just feels dense, like the rest of my  fibrocystic breasts. I'm lucky I just started doing self-exams again. (In fact, it was my first self exam in years, even though they weren't being recommended to women anymore; I'm glad I didn't read that guideline until after mine saved my life; I found the  one area that hadn't been dense in the past—the upper quadrant—now felt the same as the  rest of my breast)

Friend: I never do self-exams. (almost 100%'er)  But I have a very  good doctor. (One friend's doctor even swears he's never missed a breast cancer)

In other words, rather than wondering how I was doing, they were actively assessing their own chances of getting the disease: Doesn't run in my family, I get regular mammograms, my doctor is probably better than hers, etc...  Of course, I made sure to give them as little comfort as possible: Doesn't run in my family either, I had a clean mammogram too, it's not my doctor's fault she missed it....  But, at heart, these questions reinforced my sense of isolation, as I could see how my very existence scared the people around me.

            

Does that mean you should never ask an afflicted friend if cancer runs in his or her family?  Of course not.  They're only words.  The real issue is what's underlying the question - do you have advice to offer depending on the answer?  Or are you just responding to your own fears and forgetting your friend's needs?  The same is true for the ever popular "You need to stay positive!" Are you reminding your friend that there's hope, or are you warning her that she better get an "A" in coping, and that you can't tolerate hearing about the bad times?  If the latter, perhaps a nice "How is it going these days?" would go a long way instead.  But then, of course, you have to be prepared to listen to the answer.           

           

 Despite the upsetting moments, Sartre was still wrong—Hell was not other people, at least not for me.  I came to accept that my cancer scared them, and sometimes they unwittingly made me feel bad as a result.  But those feelings paled in comparison with the way many of them gave of themselves so generously—traveling hours across state lines to visit me after surgery, taking care of my kids during bad chemo days, cooking my family's dinner, driving hours out of their way so that I could go on vacation and still get into the city for treatments, listening to me whether I had a "good" attitude or not, sending me the best joke emails that actually made me laugh. 

They reminded me on a daily basis that a world that contained people like them was one I wanted to stay in for a very long time.