The Tender Trap Of The Gender Gap

I received three letters in three separate envelopes from the state medical board. I tore the first one open; a single page with the name of the respondent at the top and an official signature at the bottom. “Dear Miss: We are writing to inform you that your claim will not proceed because there is not sufficient evidence…

What the board was telling me is that my claim against three doctors is being denied. They saw my facial droop, my staggering walk, my shaking legs, heard my stilted speech, and then saw it go away when I tilted my head to manipulate the CSF in my cranium, and they wrote in my medical records that I was making it all up. It took me close to a year to get the correct testing after that. When I had everything together, I bundled it and sent it to the state including the disc with my complete MRI showing my brain had collapsed. I sent documentation from my previous surgeries. I outlined how their notes directly affected my life – both by delaying my care, and because I was denied by the Undiagnosed Diseases Network based on their notes.

The only conclusion that I can possibly come up with is that I’m a woman. Who could believe me? Why not attach a hinge to my cranium so I can flip my lid open for everyone to see, and then maybe, maybe, they will consider the notion that I’m telling the truth?

The irony is that this very place where these doctors work tweeted an article today about how there’s such a big gap in women being tested in healthcare trials, and how there’s still a huge gender bias against women when it comes to our symptoms being recognized and validated. THIS EVEN HAPPENS IN LAB RATS. So they are willing to admit it happens,

but

not willing to admit it happens with them.

Here’s another article that speaks directly to the phenomenon of being a woman in the healthcare system. Women are “emotional” and therefore shouldn’t be believed. By the way, female doctors can be just as unforgiving as male doctors.

I’m going to take a little time out to compare and contrast. I have a male family member who had rotator cuff surgery when he was a teenager, at least 13 years ago. He just had to have an EMG of his arms and possibly legs. I was explaining to him what to expect since his doctor’s office didn’t do a very good job. Let me emphasize that there’s a 13-year span between those two medical events. Yes, recovery from rotator cuff surgery isn’t pleasant, and an EMG isn’t pleasant.

In comparison, I’ve had 10 brain surgeries, 12 abdominal surgeries, 4 infections cut out, 7 crowns, 10 spinal taps, 2 EMGs (including my face), a year-long CSF leak, and a spinal blood patch in a 7-year period. For a lot of these I couldn’t have Lidocain because my body doesn’t metabolize it, and it’s the same for morphine. So every time I was poked or sliced or stitched, I felt it. I also tore the capsule and the tendon in three places in my left shoulder (but couldn’t get surgery because of all of the scar tissue I make). I’m also horribly allergic to my shunt that is still implanted and runs from my brain to my abdomen, so I constantly feel like I am being stabbed in my lower abdomen.

This male relative’s doctors immediately jumped at the first sign of his trouble. The help he has received is in stark contrast to how I have been treated, which is to be called a liar and to be treated as a hysterical woman. He was also considerably nervous about the EMG. I tried to reassure him that if he could get through rotator cuff surgery, the EMG would be much easier. Seriously, I would trade that CSF leak with just about anything. An EMG is a walk in the park.

So, what exactly do women have to do to “prove that they are in as much pain as men”? Shouldn’t it be the other way around?

Advertisements

Send Up The Flares

It has been a really long time since I’ve logged into my FetLife profile. I didn’t realize it, but I had three messages waiting for me – one from about two months ago, another from four months ago, and the third from a full year prior. The one from a year ago I let slide. I mean, I did put in my profile that I don’t log on and that I’m going through a health crisis, and I can’t “play” in any way, shape or form. I did make a small adjustment to my profile, which alerted my friends and RELEASED THE KRACKEN.

One former spank party friend wished me well and told me that he had heard I moved to California. I replied that that wasn’t the case, I’m actually in Minnesota, taking care of some serious stuff. Then the guy who sent me a message four months ago hit me up again, this time with his instant message name and phone number. I replied that I was not looking to do ANYTHING, but that didn’t deter him; he said he would be willing to “give me a massage if I needed it.” Um, right, do bedridden women usually fall for that?

Then another guy whom I’ve played with at spank parties in Arizona hit me up to let me know he was actually currently in my city for work, and was I interested in getting together for a session? I groaned. This guy…he’s very, very, VERY focused on his kink. I like to have fun. It’s not the be-all, end-all thing for me. He carries a backpack with all of his tools. He actually has two pictures of me (not showing my face, only my red ass) on his profile. He’s totally into role playing, having me stand in the corner, punishment, the whole bit.

So I turned him down, because there is no fucking way I can do anything, including hang upside down, or put my stomach over his knees. The thought makes me cringe. I would be walking like a cat just getting out of anesthesia. And it would be painful, and not in a good way. So he asked me if I could be his chat buddy while he’s traveling for work: talk to him about discipline, spanking, corner time, paddling, etc. I’m rolling this around in my head, and first of all, this requires research. And time. And creativity. Probably some motherfucking Skype. A hairbrush (because wouldn’t you know it, I’m bald). It’s all I can do to peel myself out of bed to make food for dinner every day, and this guy wants me to put a lot of effort into keeping him happy and satisfied.

It takes a lot of effort to turn him down and I know I’m going to have to repeat myself. It’s not my first time. And there it is: “I’m traveling a lot and I don’t get the opportunity to do what I need to do.” So I have to drive it home for him: I’ve got serious stuff going on, I’ve got scar tissue in my brain and I have to lay flat 20-22 hours every day, I’m in pain, I can’t get another operation right now. His reply: “Okay, just know that you’re missed.” BTW, he has a wife and two little children at home. She knows about his kink and his attendance at the spank parties; I don’t know what else she knows because the travel job is news to me – but then again, we were never close.

This is also not the first time I’ve had to turn him down since I started having shunt failures. His kink always comes first. It’s fucking exhausting, man. But if y’all are interested in a pen pal, hit me up.

In other news, for about three weeks I’ve been dealing with persistent hives on a daily basis. I wasn’t quite sure what to do because of losing my rare disease doctor. However, I received a message from him this morning indicating that he put a script through to the compounding pharmacy for me that will (hopefully) help with my hives as a sort of last hurrah while I try to find another doctor. I also got the names of two doctors in the area who would be willing to communicate with him. The problem is that one is old as dirt and so probably won’t be practicing much longer, and the other one isn’t much younger and has a bad reputation for being a raging bitch. I need to sacrifice a chicken and do a dance around a fire or something.

Also today, I received a call back from the neurosurgeon’s office whom I originally saw two years ago when I relocated here from Phoenix. I called him as a last-ditch effort to try to be seen by him or someone else in the practice and get away from my current neurologist. She has been telling me that I don’t understand my symptoms – kind of along the same lines of telling me that even though I stubbed my toe, it’s really my nose that is hurting, ridiculous like that. So this neurosurgeon was kind enough to order a repeat lumbar puncture, which I’ve been begging for since December 2016. The lumbar puncture he ordered is “high volume,” meaning they will take at least four vials of cerebrospinal fluid. They will measure the opening pressure (like you would when you check the pressure on your vehicle’s tires) and then they will send the vials of fluid for testing of the proteins and check for bacteria. Getting this done will also relieve my symptoms for a few hours. He also agreed with me on my choice of neurologists within his group. 

My current neurologist’s justification for not ordering a current LP is this: Usually slit ventricles means that you are overdraining. I pointed out to her that my shunt failed 17 days after surgery in 2015 so I’ve got high pressure, and she witnessed my shunt opening up for about 30 seconds during my last appointment, and my paralysis went away, then came back. Then we read scientific journal articles together about adults with slit ventricles and shunt failures and symptoms. Then she said it only happened to some adults. I asked her why I couldn’t be included in that “some.” She told me it didn’t count because I wasn’t throwing up, I was only nauseated.

Fuck that. Spinal tap, here I come. 

Gender Bias: It’s Not Just for Work

Everyone is going crazy for this article that was published about a man and his subordinate who swapped names as an experiment to show gender bias in the workplace. Really, it’s not so much an article as it is a series of tweets, but you get the full picture. And REALLY really, if you’re a woman and you’ve worked outside of the home or if you’re a woman and you’ve been outside of your front door, you know how this went.

We Swapped Names and I Was So Surprised (Said Every Male)

But if you know anything about my blog or about me, I write about my experiences as a woman in the American healthcare system. Now I’m a really concerned woman as I watch a very out-of-touch bunch of Republican-led lawmakers work on dismantling the social safety nets that will help keep me housed and fed as a disabled adult with no chance of working (at least, not now, for as long as I’m allergic to the shunts they keep putting in me).

A huge barrier to my care is the fact that I’ve seen 57 doctors in 6.5 years, and a good number of them have told me to go away and not come back. My disease and symptoms scare them. They can’t diagnose me. I can tell them exactly what’s happening with my body, but they don’t believe me – they tell me it’s not possible, even when I demonstrate it and they see it with their own eyes.

I was told by someone close to me – a man – that I probably wasn’t doing something right. I wasn’t advocating enough. I wasn’t demanding enough. I wasn’t yelling enough. I wasn’t stoic enough. I was probably too emotional, or not enough, or not the right combo. I was just the wrong kind of patient and it was hurting my case.

By the time you get to 57 doctors in 6.5 years, you learn a lot of tactics: cajoling, crying, stoicism, joking, demanding, taking binders of info (so they can’t claim that they don’t have enough of your info at hand to continue).

My conclusion is that I just don’t have a penis. I wouldn’t be doubted. I wouldn’t be treated as if I’m being over-dramatic or like I can’t handle four-syllable words.

I always invite someone who has told me that I’m not doing enough to come with me. Of course that person suddenly becomes too busy to join me…but not too busy to dispense advice from his armchair.

Product Review: Visbiome

When people who don’t know me well ask what I do, I tell them I’m a professional patient. When I detect a slightly pitying look cross their faces, I tell them it’s not so bad, because I get to review products like this – and truly, I count myself lucky to have access to them since I have limited means at this time. Please note: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

2016-10-23-06-16-10

Visbiome is a high potency probiotic targeted specifically to be used for patients who suffer from ulcerative colitis, irritable bowel syndrome and pouchitis. I suffer from irritable bowel syndrome and was clinically diagnosed after a colonoscopy in 2011, but for years before that my body vacillated between diarrhea and constipation without a whole lot of predictability. I know that in general my body likes protein and veggies and punishes me for eating carbs, simple sugars and fatty foods. In other words, I won’t be heading to the infamous Minnesota State Fair anytime soon, where they brag about having deep fried Coca-Cola as a “thing.” That would lay me low for ages.

However, knowing these things, my diet isn’t perfect. I’m bed bound because of major issues with CSF getting caught around my brain stem and I’m allergic to the shunts that have been implanted and failed, so long story short, it’s impossible for me to go to the grocery store every third day for fresh produce. I also can’t spend a lot of time standing and prepping, so I eat a lot of stuff that’s pre-cut and frozen. I have also become an expert on which protein bars don’t taste like sawdust but also don’t have a high sugar content.

So, Visbiome to the rescue! As you can see from the picture, the living bacteria – 112.5 billion per capsule – is incredibly high. For that reason you must plan on storing this product in the fridge at all times so the capsules don’t lose their potency. I was shipped a 30-day supply and it was packed in ice packs in a cooler, and this will be the norm when you order it. In fact, it will be smarter for you to ship it to a location where you can unpack it and get it in your fridge as quickly as possible, so if you know you’re going to be gone from home for 14 hours, maybe it’s smarter to ship to work instead.

The recommendation on the labeling is for this product to be administered under the supervision of a doctor. This is important because because of the extremely high bacterial count in each capsule. You will undoubtedly notice a change in your digestion and bowel movements. If you experience diarrhea for an extended amount of time or other undesired effects, your doctor will advise you to either change the frequency of the dose, the amount, or to stop it altogether. Your best health is always the ultimate goal.

I read the enclosed pamphlet and it indicated that for IBS I should take 2 capsules daily. I opted to take both at the same time because I tend to be forgetful when I’m taking new medications, especially if they are only meant to be taken for a few weeks. Some of my fellow bloggers had good results splitting their doses up throughout the day.

Wouldn’t you know it? Right in the middle of my doses, I managed to get a nasty case of flu. Five days later I developed fluid in my ears which churned into two very nasty ear infections, at which point I had to go on antibiotics so my ear drums wouldn’t perforate. A few days later I also developed bronchitis. I actually think I was quite lucky to be on the Visbiome at this time because the antibiotics were guaranteed to kill off anything good growing in my gut, but this product could re-introduce some helpful bacteria. I’m also terribly prone to yeast infections, and I think that taking Visbiome helped a bit with me not having to be so miserable in my lady parts.

The term “medical food” is a new one to me but I decided to look it up because I think we will be seeing more of it. This is the definition per the FDA:
“The term medical food, as defined in section 5(b) of the Orphan Drug Act (21 U.S.C. 360ee (b) (3)) is ‘a food which is formulated to be consumed or administered enterally under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation.'”

Please visit Visbiome’s site and pass it along to your healthcare professionals so they can review all of the product’s benefits.

Nothing Like Designer Jeans

I’m listening to Pandora right now, and Whitesnake’s “Is This Love” happens to be playing. What were the hottest jeans from 1988? Maybe they were Guess?, maybe they were Girbaud (with the little loop at the top of the fly). I remember that it was important for guys to have Levi’s, at least in the little town where I was attending school when Tawny Kitaen was straddling two Jaguars.

There’s trends in medicine too. Remember how just over a century ago, no one really had a grasp on how important it was to wash your hands? And remember how 80 years ago, antibiotics were just around the corner, but before they were available to the general public, syphilis could very well be a death sentence? But it’s not so much trends as it is that we become more aware and educated.

Medicine attempted to treat PTSD in soldiers and document it for as long as wars have been fought. Different names have been attached to it; “Soldier’s heart” for the Civil War, “shell shock” for World War I; and “Combat Stress Reaction” for World War II.

After WWII, the American Psychiatric Association worked to put together a label that would apply to all symptoms that would appear as a result of traumatic events, not just war. It has actually been through five revisions to date and includes four different types of symptoms: reliving the traumatic event (also called re-experiencing or intrusion); avoiding situations that are reminders of the event; negative changes in beliefs and feelings; and feeling keyed up (also called hyperarousal or over-reactive to situations). Most people experience some of these symptoms after a traumatic event, so PTSD is not diagnosed unless all four types of symptoms last for at least a month and cause significant distress or problems with day-to-day functioning (see PTSD: National Center for PTSD ).

Since I’m part of the Chronic Illness Bloggers network, I’ve been able to read a lot of my fellow bloggers’ unique perspectives, and more than once I’ve seen references come up about PTSD in medical settings. I cannot believe what some of you have had to endure. I worry about putting on my Girbaud jeans and raising my hand and saying “Me too,” but after having many discussions with my counselor, she has confirmed that I indeed have PTSD triggered by my experiences brought on by this mystery disease.

Was there one big bang? I don’t think so, just like there isn’t one big battle in war, but a whole war. There were certain things that were especially traumatic. The time that my neurosurgeon stood in the doorway of my hospital room on the night of my birthday in 2013 after my fourth surgery and told me he would have to send me home nearly blind because he was just in there and it had to be something else, not a shunt failure was especially traumatic (turns out that it was a kink in the shunt that developed that would not have been discovered if I would not have thrown a hysterical fit to have a nuclear shunt study performed).

One story that I told to my counselor in this week’s session happened January 2014. 2013 was my big year of surgeries – six in all. I got to know my symptoms of shunt failure really well, plus I figured out that I was making copious scar tissue and adhering the shunt to my chest and abdominal wall. At various times I also leaked great big pools of CSF out of my spine so that I had a softball-sized vat of fluid sitting on my back, and a more dangerous situation of having a shunt in my brain and another one in my back, making it harder to control pressure.

My last surgery in 2013 was December 21st; that was when my neurosurgeon finally believed me after 2.5 years that I was allergic to the shunt, when he saw for himself that my abdomen was red and inflamed, like a “war zone,” as he put it. I told him that I needed to see an immunologist and a rheumatologist, but he said that I was “taking it too far.”

A month later, my shunt clogged or strangled again and it was adhered to my abdomen by scar tissue. I went to the ER and saw the on-call neurosurgeon, someone I had never seen before but who was with Barrow Neurological like my neurosurgeon and had access to all of the notes from my surgeries and could talk to my neurosurgeon. I demonstrated for him my usual problem when my shunt isn’t working and my symptoms come back: when I’m upright, my face is paralyzed and I can’t open my eyes; when I lay down, my eyes immediately open because the fluid moves away from the brain stem. When I sit back up, the fluid moves back to the brain stem and presses on the nerves again.

The neurosurgeon went away. The regular ER doctor came in and said I had a clear case of a classic migraine headache. I told him it was ridiculous and asked if anyone read my notes from my chart from all of my other admissions and surgeries, and he said he didn’t know, but that was what the on-call neurosurgeon said. Then he handed me a prescription for opioids. I was absolutely floored. I demonstrated for him what happens when I put my head parallel to the floor – my eyes open – and what happens when I’m upright, and asked him if that’s “typical migraine symptoms,” and he said he didn’t know, but that was what he was told, so that was it. I told him it was bullshit (never raising the volume of my voice, by the way). I told him that if they discharged me, I was going to turn around and ask to be admitted again. He told me they would refuse to treat me. I asked him why he prescribed pain medication for me when I wasn’t in pain, my shunt was simply clogged. He said that with patients with clogged shunts, they always get headaches, so if that was really my problem, I should have a headache. Then he left.

I was openly crying and shaking. The nurse came in and her whole demeanor toward me changed. She told me that I had to stop being abusive to them, they were just trying to help me; all the while I couldn’t even speak, I was so stunned. Then she yanked the IV out of my arm without putting pressure on the puncture so that I bled all over and then snidely said, “Oh, look at that, you’re a bleeder!” I just sobbed harder. She left the curtained room and I shut the curtain and cleaned myself up and managed to get changed. She came back with the discharge papers. I asked her if she could walk me out of the maze of the ER back to the lobby. By then it was 4 a.m. and quiet. She told me that she was too busy and that I had to find my own way out. My room was next to the nurse’s station, and many of the night ER staff had congregated there and were observing the exchange. They could also see that I had a cane and paralyzed eyelids that were mostly closed; one offered to help, but my nurse said, “She’s fine.” Another person asked me if that was true, but I couldn’t speak. I just kept walking. You could have heard a pin drop.

I finally made it out to the now-empty ER lobby and managed to call a cab and directed my face to the windows so I could watch for the familiar colors of the cab company. When the pressure gets bad, that’s all I can do – make out shapes and colors.

When I contacted my neurosurgeon’s office after that visit, I discovered that he actually upheld the on-call neurosurgeon’s decision to diagnose me as having a migraine episode, even though my neurosurgeon had been following me for 2.5 years and knew my symptoms just as well as I did at that point and performed all 8 of my surgeries to date. Everything that I have told my neurosurgeon that has been wrong with my body has been completely correct, and for him to suddenly go with something as far-fetched and outlandish as to describe this as a migraine episode immediately caused me to distrust him deeply. Before I would have talked to anyone who would listen about how great he was about thinking outside the box; after that I only hoped to survive.

Because of this horrible ER visit, I went home and started stretching my torso because I could tell that the shunt was adhering again to my abdomen only 3-4 weeks after the previous surgery. It was the only thing I could think to do. In the process, I managed to stretch so vigorously that there was a tug of war internally and I created a break in the shunt, which led to a leak…and because my neurosurgeon finally conceded that my demand to get an immunologist and a rheumatologist involved in my care was actually very practical, he refused to fix my leaking shunt for almost a year, which was EXTREMELY painful.

But that’s another story.

Back to PTSD. Post Traumatic Stress Disorder isn’t reserved for those who only experience war, or even a natural disaster. It certainly applies to anyone who has been abused in a relationship.

And it certainly applies to me. And I’m not even done with the war. I’m not even “post” anything yet. 

2016-10-01-12-51-21

Dear Mr. President

I figure I have nothing to lose.

It will be a few months until all of my dental work is completed. I am pretty sure that the one tooth that has a “catastrophic” crack is going to be a complete loss, and I’m going to have to spring for an implant (or a partial plate/denture). I’m not allowed to have pain pills – not because I’m not suffering, because clearly I am, but because the FDA and the CDC has decided it’s a good idea to regulate me, rather than try to treat addicts. So I’m stuck eating scrambled eggs and applesauce and rice because I’ve cracked all of my teeth because I’m in pain.
The NIH/Vanderbilt has turned me away with a final diagnosis that is a complete misdiagnosis, so now I’m down to a PCP who will only write me prescriptions for my cholesterol meds. I might have the mast cell disease doctor, I might not. That’s up for debate.

So I wrote a letter to the President.

That’s right. Not that I expect Barry, a single digit midget with only months left in office, to be able to do much about it, but overall, I think those of us who are applying for or who have received disability really get the short end of the stick every time. Here’s what I asked for:

1) Common sense from the people who determine disability. I cannot believe how many times I have heard directly from people who say they have been turned down for disability because they have been paralyzed. One person was a paraplegic and their only way to ambulate was to blow into a straw on their customized wheelchair. THAT PERSON WAS TURNED DOWN FOR DISABILITY. Unless the SSA can prove that the vast majority of the U.S. population ambulates by blowing into a straw on their customized wheelchairs, I think this person should be considered disabled. Likewise, if I have to lay for 20-22 hours a day to keep the pressure off of my brain, common sense should tell my determiner that I am disabled, unless the majority of the U.S. population travels to work on a bed. THEY DON’T. Yet here I am, being told that there’s no way anything is wrong with me. By the way, it’s not just my physical limitations that determine my disability (silly me for thinking that); it’s my age and education too, and since I’m college-educated, there’s a higher chance of me finding some job to support myself – more so than someone with just a high school education, even if it’s a physical labor job that requires only a high school diploma. One guy was told that he can fold napkins, so he was denied disability. If anyone knows of a job where the only duty is to fold napkins and you can pay all your bills and eat too, hey, let me know, I will fold the shit out of those napkins…from my bed.

2. The time to process a disability case is appalling. I was told it “wasn’t unreasonable” to have to wait two years to be assigned a hearing to determine disability. If I can’t work and I don’t have any source of money coming in to pay for basic needs like rent and groceries, how is this reasonable? Not everyone has relatives that they can live with.

3. Accountability. I told President Obama that it’s incredible to me that I have to resort to writing to him or to daytime talk shows or to local TV stations with the hope that someone will find my story interesting enough to want to “rescue” me. But what about the thousands of people like me who don’t get that chance? Why should only one person win the lottery? Why are only some people worth the money and effort?

In closing, I acknowledged that my letter could be completely pointless if Trump is the President Elect. We all know how he hates disabled people…and people of color…and women…and poor people…and foreign people except for his wives (that he later cheated on)…

Can You Describe It To Me?

This week I’m getting ready to attend the 14th National Conference on Hydrocephalus (http://www.hydrocephalusconference.org/conference-information/conference-fees/) that is happening right here in Minneapolis. I’ve got my t-shirts ready. I’ve got my binder of medical history ready. I’ve got my boyfriend ready. I’ve got my transportation ready. I’ve got the hashtag for Twitter ready (#HACON2016). I’m getting mentally prepared to be upright for 9 or 10 hours for three days in a row (only about three hours for the fourth day because everyone is flying home Sunday). It’s going to be really, really tough, physically and emotionally. I just don’t know what to expect but I’m trying to prepare for every variable.

I’m starting the conference by meeting my attorney for the first time because he’s about five blocks away. He doesn’t know that if I detect laziness from him, or a “can’t do” attitude, I will kick him to the curb. At this point, I cannot be the only person fighting for me. I don’t know if actually seeing me and my physical challenges will change his attitude, but he has not been impressive over the phone so far. I keep getting flashes of Boss Hogg a la “Dukes of Hazzard,” all oily, fat fingers and labored breathing. (I realize I’m being very harsh and am one step closer to Hell. Maybe I’ll see you there?)

Then I’ve got to figure out how to be succinct. My t-shirts do half the battle for me. The weather we are having is both a blessing and a curse for me, because if anyone sees me outside, they will witness me at my worst – my face will be almost completely paralyzed, so that means my eyelids will be mostly closed. However, air conditioning helps with temperature, pressure and humidity, so it will take longer for the pressure to build when I’m inside. When it’s bad, I want to die. It’s not an exaggeration. I have trouble explaining it. It’s not a headache. I associate headaches with dull or shooting or throbbing pain; this is more like my brain is being suffocated and crushed by an elephant sitting on it while my head is submerged underwater. But how can I explain that without it sounding like an outrageous exaggeration? It’s not like I keep elephants in my back pockets to demonstrate to others on the spot what is happening with my body for times like these.

I’m also dealing with my left shoulder and right hip giving me loads of trouble. I babysat my nephews Sunday night while my sister and her husband attended a concert, and I had to block a body shot from my 7-year-old nephew, which made me nearly weep with the pain it stirred up in my shoulder. It hasn’t stopped since. I knew my physical therapist would ask for a number to rate it today. I struggle with the pain scale, because as I pointed out to a fellow blogger, my “7” is someone else’s “21.” My PCP thought I was dealing with an inflamed tendon, but since therapy has not been a steady upward improvement, I may in fact be dealing with tears in the tendons and/or ligaments in my shoulder for laying on it for the first three years of shunt surgeries being done on the center and right side of my body. I’ve got an appointment with an orthopedic doc who only specializes in shoulders a week from today.

But even my crying “10” isn’t my real “10.” I would say that my worst pain has been when the CSF has been overdraining – both after my very first surgery, and then for almost all of 2014 when I had a leak in my shunt but my doctor wouldn’t operate because he wanted to find out which parts I was allergic to. Almost every time I got up, I cried. It really did feel like I was being beaten. I know it’s because my brain was coming to rest on my cranial bones. What would be worse? Read my fellow blogger’s description of her “10.” http://www.thehurtblogger.com/post/15492551756/evaluating-the-1-10-pain-scale
Now if you’ll excuse me, I’ve got to try to track down a reduced-rate or free dental clinic that will do three crowns for me. I can’t chew on the left side of my face because I’ve been in so much pain that I’ve been clamping down with my jaw in my sleep and I cracked three teeth on my left side.

Did I Or Didn’t I?

Please note: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

The Saint Paul remarked upon the sheer volume of medicine that he could see displayed in my bedside drawers, something that started with “Wow.” I told him that the one drawer that was open as well as the bottles on the surface were only the half of it and that the other two drawers were filled as well. Of course, I don’t take them all every day; some I keep because I know they might come in handy later. Truly, though, I go through about 45 pills per day thanks to my prescriptions and supplements.

The makers of PillSuite (http://pillsuite.com) were kind enough to send me their product to give it a whirl. I received a sorter, two rolls of sealable baggies and a sealer. 2016-03-27 11.40.02I chose to load up my midday pills, which are only about seven in number but are the largest in volume. When I looked at the sorter, it seemed like the compartments could only handle these seven, and I was right.

The baggies are biodegradable and can be written on with any sort of note you choose to write; I recommend a fine-tip permanent marker.
2016-03-27 11.41.51

After you snap the lid onto the sorter, you flip it over so the funnel lines up into the open end of the next plastic baggie to load up the dosage.
2016-03-27 11.42.25
There was just enough room to get these horse pills into this baggie, just like there was just enough room in the compartment.

Next, the open edge of the baggie is pushed to the back of the sealer and the big button is depressed for 3-5 seconds, which seals the baggie shut with a fine line. The red indicator light shows that the sealer is working its magic and closing off the baggie.
2016-03-27 11.44.07
After that is done, both ends are completely sealed, and your meds and supplements are ready for transportation.

When you are ready to consume them, there is a perforated end that can be easily torn open.
2016-03-27 11.44.52

Here are some advantages to using this product:
1. You bet I like the fact that the baggies are biodegradable! I’m always worried about how much I consume and add to the demise of our resources because it’s not easy for me to do things that able-bodied people take for granted. Check out this episode of In Sickness + In Health podcast (http://www.insicknesspod.com/blog/2016/3/8/23-when-sus).
2. I can write anything I want to on the baggies. I can indicate the medication names and dosages, or I can indicate the time of day the pills should be taken, or I can remind myself to take the contents on an empty stomach an hour before eating, etc.
3. This is a great product for traveling. Sometimes I have appointments that require a lot of time for me to be away from home, and it would be a lot easier to slip one of these baggies in my purse than it would be to take a pill sorter or an actual bottle (or seven) with me. This would be pretty handy for a short trip as well. The only time it wouldn’t work is traveling outside the country; TSA requires medications to be in their original prescription bottles when traveling outside the U.S.
4. This takes the mystery out of whether you have missed dosages or not, especially if you have scripts or supplements that are taken 3-4 times a day or you have to stagger everything according to a full versus an empty stomach. I have yet to see a pill sorter that has enough compartments for all of my dosages.

One disadvantage for me? My evening dose of meds and supplements actually adds up to about 25-30 pills and capsules – the seven that you see here, plus a bunch more, depending on how I am feeling. I would actually have to fill two compartments in the sorter and therefore two baggies for the nighttime dosages.

Ordering additional “suites” as the baggies are called is impressively inexpensive from http://store.pillsuite.com/.

Now You See Me

About a month ago, my fellow blogger Nikki (As I Live and Breathe, http://ilivebreathe.com/blab-archive/) and I started hosting sessions on Blab to talk about topics that concern us as patients with rare diseases and chronic diseases. We’ve had a lot of fun and have learned along the way what has worked and what hasn’t. Nikki also keeps seats on lockdown so we don’t have bullies show up on camera (though we can’t control trolls that come in and leave after they have said nasty, vile things). It’s pretty easy technology once you get the hang of it. I hope that you will consider joining us for our #SickadillyChat every Friday around 4 pm EST/1 pm PST (times sometimes change by an hour or two earlier if we have something that is going on – you can always subscribe to Nikki on Blab so you have the link for the show). If you are otherwise occupied, Nikki keeps a working list of our chats as they are recorded.

“Sickadilly,” according to the Urban Dictionary, means 1. To be fresh or poppin, or 2. To look beat. I mean, c’mon, we’re a little bit of both, aren’t we?

I consider us lucky to have the help of a few physician friends that Nikki has gotten to know well from her years of advocacy and education. Their enthusiasm and openness helps to keep us on the right track.

If you have ideas or topics you would like to cover, feel free to leave comments for Nikki or I. We also may approach people to join us, if they are able. We already have a running list of topics that we hope everyone will find interesting.

Here’s the latest one regarding apps and devices used to assist with your healthy living and healthcare from home, from February 26, 2016:
https://blab.im/nikkiseefeldt-sickadilly-chat-4-let-s-talk-about-tech-baby-ci-disab-rare-dis