Lucky day

The nights are getting cooler and the wind is no longer warm. Darkness descends earlier. Fall is close. I walk a lot but especially at night when it is just a little cool. I listen to music and look at the moon with a dog in tow. Life seems less antagonistic when you look at the ocean.

Last week on just such a night, I took Astoria for a walk to the water. It wasn’t late but the town was quiet. About a mile from home, as we walked down the block to the ocean, a man ran past us and almost bumped me. I turned to steady myself just in time to get coated in pesticide that was being sprayed from the back of a pickup truck.

I just stood there for several seconds because I couldn’t believe what had just happened. I was stunned. Astoria has saddlebags with her treats, water, bowl and bags on one side, and my epipen, IV meds, and emergency protocol in the other. My immediate reaction was to take benadryl but I was afraid I would contaminate the line with pesticides if I used it. We were close enough to my apartment that hurrying home would get me there faster than calling someone to pick me up and bring me to my place. I took the epipen out of the case and walked home as fast as I could with it in my hand.

I was home in under ten minutes. I took off all my clothes and threw them into the washer with Astoria’s collar, harness, leash and pack. I rinsed myself off so I could use IV meds and got benadryl and pepcid onboard. I took 50mg oral prednisone and gave Astoria a bath.

Astoria can be a lot of work sometimes but one thing that is never a problem anymore is bathing her. She loves water. She loves the hose. If I am trying to spray something with the hose, she would prefer what I’m spraying to be her face and will jump back and forth to body block whatever I am aiming at. If I wash dishes, she stands close to the sink so I can spray her with the little nozzle. She knows all about the bathtub and that the water lives there. When I get home from work and open the bathroom door, she ferries her toys from the bedroom to the bathroom one at a time, piling them on the bath mat. When she has all the toys she wants, she picks up her favorite dinosaur and gets in the tub. Just hanging out in the tub so she doesn’t miss bath time. If she is dirty (or not), she will actually get into the bathtub and look at me plaintively until I wash her. She is a ridiculous creature.

Well, it was her lucky day because after getting covered in pesticides, we had a long bath. She was pumped. I shampooed her all over and rinsed her really thoroughly while she repeatedly slapped me in the face with her tail. She shook off all over the bathroom because why not at this point and let me aggressively towel dry her, which meant she was at most 70% dry.

Since I was now covered in water, fur, dog shampoo and probably pesticides that I just washed off her, I took another shower. Fifteen minutes later, after I wiped down every last surface in the bathroom because they were somehow all coated in fur, Astoria started coughing. So she got another bath. More shampoo. More water. More shaking. More towel drying. More cleaning every single thing in my bathroom. She is having her best day ever.

As I’m changing over the laundry and loading a truly impressive amount of used towels into the washer, she is running in and out of the bathroom with her tail going so fast that she is knocking things off the coffee table. LOOK MOM THIS IS MY DINO. More wagging. More wiggling. She is at a cool 97 on the excitement scale if 100 is the point at which you actually detonate from euphoria. LET’S DO THE THING WHERE I WANT YOU TO PLAY TUG WITH A STUFFED ANIMAL THAT ISN’T BIG ENOUGH TO GET A GOOD GRIP ON. LET’S DO IT.

But I still need to shower myself again so I put some peanut butter in her kong for her to play with and I climb back into the shower. I am listening to music and trying to calm down as I scrub myself again. In the next room, Astoria finishes up with her kong and comes looking for me and then lets herself right into my shower. She is now 100% wet instead the 30% I was settling for earlier. She is slapping bottles of shampoo and body wash off the shelves with her tail. I have two towels left and it takes 1 ½ to dry her off. At this point, the dog has been washed and buffed dry three times in two hours. Her coat is so shiny, I can’t look directly at her without sunglasses. I’m bright red and developing my own cough so I take IV steroids and just plan to never sleep again.

My town was spraying for mosquitos that night, which is how all this happened. I have a landline for calls like the one I expect for spraying. I didn’t get a call. I usually do and realize that this was just an unfortunate glitch. I don’t think anyone is to blame for this situation. I didn’t make any mistakes and this still happened. You can plan and prepare but there is always an unknown element. The world is not entirely predictable and that means that there is always the chance that some unlikely thing will happen. I had my meds, I had epi if I needed it. I was responsible. I understood that I can’t always control my disease or my environment so I had to be ready to respond. A large part of learning to function with mast cell disease is understanding that you will never be able to completely control your exposure to triggers.

A completely different situation that also happened last week confronted me with a separate but related reality: that people often think that people with disabilities are just not doing it right. By which I mean being disabled and living with a disability. It is omnipresent and so frustrating and degrading. When we say that someone gave us trouble for parking in a disabled spot for which we have a placard, they say that if they were disabled, they wouldn’t park there because it’s not fair for people who have worse mobility.When we say that we are scared about not being able to get medication for chronic pain, they say that if they were disabled, they would meditate and rub themselves in [insert herbal remedy] and push through the pain by virtue of their willpower. When we say that we are worried about how changes in healthcare policy will affect disability payments, they say that if they were disabled, they would never allow themselves to need disability payments because they would continue to work fulltime. When we say that we can’t pay for our meds and copays, they say that if they were disabled, they would manage their money better. When we say that our insurance won’t pay for a medication that we absolutely need and should have, they say that if they were disabled, they would never let that happen to them, that they would just be so forceful and smart that no insurance would be able to deny them anything. (I just made a Michael Phelps face as I typed that last sentence. This point is a bit more sore than I thought.)

I realize that this response derives mostly from two things: ignorance, and to a larger extent, fear. It is terrifying to confront the fact that we live in a society where people can just refuse to provide you with things you need to function or even to stay alive. It is scary to think that you can become so sick overnight that your old life will never be manageable again and that you will need so much help to do anything. It is scary to think that providers and government agencies and pharmacies can refuse to alleviate your serious pain. It is much easier to think that disabled people are just doing it wrong than it is to realize how vulnerable we all are in so many ways. Few things are scarier than impotence. Maybe nothing is.

Hope you’re having a great summer.

 

Astoria has a bath

 

 

Astoria has a life jacket

 

 

Astoria has a bathtub

Unshakeable: An update on Kristina

On Father’s Day in 2008, my father had a massive heart attack. My mother, sister and I were passengers in the car he was driving to a restaurant for dinner when he suffered a full cardiac arrest. I know all of the facts about what happened because I have recited them so many times, but I don’t truly “remember” most of what happened. I remember performing CPR in the middle of the street and worrying that I was not being forceful enough with compressions immediately before I cracked his sternum. I also remember calling my uncle from the ambulance and thinking at the hospital that this was one of those moments that would divide my life into periods of before and after.

There have been a few other moments and I mostly recognize them when they are happening. I did not realize that the week spanning the end of September and beginning of October in 2015 would be one of those. I spend a lot of time reassuring people about their health, including myself, to the point that it is almost a reflex. I assume things will be fine until I am shown incontrovertible evidence that they will not. I trick my body into thinking it’s not scared by donning the physicality of confidence and busy my mind with other things.

I have a practiced eye and I should have been able to see the impending storm last year. On the other side of the horizon, a darkness gathered, spinning and spinning into a fury. But I didn’t. None of us did. I think about it every single day.

Last week, a friend commented that Naples is not too far from where Kristina lives. It’s lucky that she did because I had no idea. Kristina is a mast cell patient and mom of a mast cell baby. She is my friend and part of a group that included me and six other masto moms or patients who shared everything. Kristina suffered a brainstem stroke last October and suffers from locked in syndrome. She is aware and understands everything happening but is unable to control her body or speak.

I visited Kristina yesterday at home with her family. She is still Kristina. She laughed at my sarcasm and bad jokes. I asked her if I could give an update for everyone thinking of her and praying for her. She said I could.

The last ten months have been very challenging for her and her family because she lost all functionality but very limited eye movement in the stroke. Additionally, she is a mast cell patient, which complicates her management and treatment. Her team is aggressively working to teach her brain to make new pathways to control movement, especially in her face, arms and fingers. She is working on sitting upright and spent some time in a wheelchair while I was there.

She has regained some movement in her face and neck. She can turn her head from side to side. She can control her eye movement better, including blinking. She can move some other muscles in her face, including above her eyes and near her mouth. Kristina communicates currently by eye movement and answers yes/no questions or spells words by blinking when the alphabet is recited to her.

Kristina is able to breathe on her own with a tracheostomy, which allows extra assistance to help clear secretions and cough if needed. Her speech therapist tried a new valve on her trach while I was there and for the first time in ten months, I heard Kristina’s voice.

It is not in my nature to be hopeless, even when things are grim. In 2008, my father was in a coma after his heart attack long enough that we were approached about giving him a trach to keep him ventilated long term. We were given a target date for this procedure since he was not expected to wake from the coma before then. Instead, the vent was removed and he woke up on my parents’ 25th wedding anniversary. It has been eight years since that day and I am still grateful for that every day. The fact that my father survived has given me the unshakeable understanding that sometimes, even when it seems hopeless, and even when we can’t explain it, people get better.

Kristina is a tenacious, intelligent and eminently capable person. Her family is amazing. They are so dedicated to her recovery. Getting to hug Kristina, and her mom, husband and son, was easily the highlight of my year. I don’t know what will happen but I am hopeful. I told her that we love her and that so many people think about her and ask about her often. I told her that I was glad to see how well she was adapting to being home and that she was making gains and that I had an unshakeable belief that she would get better, too.

Thank you for keeping Kristina and her family in your thoughts and prayers.

An uncommon gift

Rare disease patients often have little in common but their disease.
We speak different languages.
We are of different races.
We live in different countries.
We have different families.
We have different ages
And politics
And religions.
We laugh differently
And love differently
And cry differently
But when you are in the moment, it all feels the same.
And because we are so different
We might never have been friends otherwise
But that doesn’t matter
Because we are.
And sometimes our differences make our friendships messy.
And sometimes our closeness despite our differences feels like cheating
Like getting a gift in celebration of something
We shouldn’t be celebrating.

Today I visited a dear friend
Who was a gift from this disease
And I sat with her
And rubbed her hands
And told funny stories
And reminisced
About the hard days
Before the hardest days came.
And thought to myself
That I will never be able to put this feeling into words.
To put this connection
Into words.
To describe
How one day
A long time ago
This woman told me about her son
And that she was scared
And when she did
The fear in my heart saw hers
But it saw the courage too
And hearts are always more courageous
When they don’t beat alone.
I will never be able to put into words
What happened inside me
When she lost her voice
And things seemed hopeless
And she was scared
And I was scared
But my heart mustered some courage
So that her heart would see it.
And we don’t know what will happen
But the only way to overcome these hardest days
Is by opening our eyes
Even when we don’t want to
And laughing
Even when it makes it hard to breathe
And remembering
Even when it twists your insides
To know
That none of us saw this coming
And that we are scared
That we won’t overcome this.

But we are part of this world
A world that gave us
Sunshine
And warm breezes
And the night sky.
That gave us
Swimming
And family
And friends
To remind us
That there is good here.
That gave us
Terror and pain
So that we would understand joy
Desperation
So that would know peace.
This disease
So that we could find each other.
These hardest days
So that we can overcome
And so that nothing
Will ever
Seem hard
Again.

Indiscretion

I am not terribly discreet about my health and the accompanying body differences. It is not in my nature. When I was growing up, I would get dressed for school in the living room in front of a window that provided an unobstructed view for anyone passing by. It took me a year to put up blinds in my current apartment because I just couldn’t be bothered. The idea that someone could see me naked is really not something that I particularly care about.

This lack of concern has extended to my day to day management of my health. This means that my health issues are pretty visible, even to people who don’t know me. My port is accessed all the time and I don’t usually wear clothes that hide it. When I had a PICC, I never wore long sleeves for the express purpose of covering the line. While many people didn’t know what I had under my clothes, they could certainly see that there was a bulge on my abdomen where the ostomy bag was. I take medication in front of other people all the time, including IV meds, sometimes in public. I sometimes need to infuse fluids during the day and so then I am walking around with a backpack holding a pump and an IV bag trailing a line connected to my port.

Also, my hair is bright red and I have distinctive glasses and dress like a 60’s housewife. Blending into a crowd is not really something that is going to happen for me.

I made a decision a long time ago to be as transparent about my health as possible in all areas of my life. During the years before diagnosis, and for about a year after, my friends and family understood in a general way that my health was not great. I was fairly functional and at that point didn’t require a lot of help to manage my day to day life.

In the winter of 2013, that changed. I crashed so hard that in the span of a few weeks I ended up unable to stand for very long, or exercise, or eat most foods, or clean my apartment, or run errands. After a couple of episodes in which I got out of bed and literally fell on my face from low blood pressure, it became obvious that I could not manage my life on my own. I was mostly unable to leave my apartment.

So I told everyone. I told my family and friends and work and pretty much everyone else I interacted with. By doing so, I was able to create an insular environment that was largely safe for me. Venturing outside of that bubble was inherently dangerous for me.

In the last couple of years, I have gradually gained more stability and more independence. I travel a lot now. In the last two years, I have been to Seattle, Colorado, Florida, California, Maine, Hong Kong, Beijing, Colorado, Maine again and Florida again. I’m currently in Naples, Florida.

Travel was a big part of my life and identity in my adult life. When I got sick, it was easily the thing I missed the most. It wasn’t even really that I wanted to go somewhere as much as I wanted to be able to go somewhere if I decided. The anxiety associated with being unable to just book a trip and go created a weird sensation of claustrophobia. I was trapped. And by traveling now, I am no longer trapped, but I am less safe.

I have written a lot about the difficulties encountered while I travel. I actually didn’t even realize how often I have written about this until yesterday when I was reading through old posts on the blog and on Facebook. I pretty much always run into trouble getting my boarding pass, despite many attempts to mitigate this ongoing problem. I sometimes have trouble even getting an airline to let me onboard the plane because some employee made a decision that I don’t look healthy enough to fly. Onboard, I often encounter trouble because I have to keep a bag with meds and an infusion pump with me at all times because the IV bag and pump are attached to my body.

And then of course there are the people who just don’t like that I’m sick. You know the people. The ones that don’t actually know you, but who make snide comments or stare.

I flew to Florida on Saturday. For the duration of that flight, I was connected to an infusion pump. The woman next to me was staring and rolling her eyes pointedly which seems awfully stupid since she could just ask me what it was if she wanted to. Two hours into the flight, I diluted a med using a needle. She finally said, “You know, it makes me uncomfortable that you’re doing that.”

I responded, “You’re going to be a lot more uncomfortable if I start going into shock,” and then pushed the med and reconnected my fluids.

Any time I venture outside of this bubble I built for myself, I accept the risk associated with a naïve and sometimes hostile environment. I find it incredible that in 2016 these issues are still present. I am clearly dedicated to educating people about mast cell disease and seize the opportunity to do so when it presents itself. But situations like this have really driven home for me that often people have already decided how they feel about what I am doing or what I look like before we even interact. In some instances, teaching them about my disease won’t help. And sometimes, it makes things worse.

There is also this sticking point: that despite the fact that I don’t try to hide my health issues, I still have a right to privacy. I don’t mind discussing my port or why I’m bright red if people ask, but I have a choice. There should not be an expectation that I disclose my private health information just because I don’t look like everyone else.

Our stories as patients are our greatest weapons against ignorance and fear about our diseases. They are our greatest assets in making the world safer for us and people like us.

But they are still your stories. And telling them is a choice.

Just an update

Hey, MastAttackers,

Just wanted to update everyone quickly.

2016 has been phenomenally stressful in virtually every area of my life.  In the last few weeks, I have had to pull way back to focus on the parts of my life outside of the mast cell world in order to restabilize. It has been hard but it is very necessary. I know everyone understands.

I also wanted to let everyone know that I am so appreciative of everyone’s offers of help and support.  It is still my intention to use everyone’s talents to form a more robust community.  I received everyone’s messages and emails and will start dialoging about how best to do that when I am better equipped to do so.  I am excited to think about the future this community has with so many people interested in digging in.

Hope everyone is having a safe and happy summer!

xoxo,

Lisa

 

 

Sense of self

I am lately remembering things that I had long since forgotten. I don’t know why it’s happening. Without provocation, my mind offers up these intense sense memories absent of context. I sometimes struggle to identify when and where these echoes belong. Other times, I can place it immediately.

These episodes are much more than the nostalgia or bittersweetness of remembering childhood. In these moments, I am there. Visiting. And in the next moment, I am outside this strange land and it is moving rapidly away. Eventually, it is only a tiny point of light nestled in the curse of the horizon and I feel this pang of transient hollowness and an odd satisfaction.

I have lived within a mile of the ocean for most of my life. It makes sense that so many of these memories involve the ocean. When I walk to the water at night, I am again on my grandfather’s boat, wearing a thick sweater in July to counter the cold rush of air as we sail through choppy waters of Boston Harbor. I feel the rhythmic sting of salt water on my face and hear the distortion of voices against the wind.

I wonder now how many more things I have forgotten and how they shaped me. I struggle lately to figure out who I am now. A lot of my identity is wrapped up in what I do. I write about mast cell disease. I develop diagnostics. I go to the hospital. I take medication. I sleep a lot. I experience pain. I flush. I vomit. I make plans that I can’t keep. I start things I don’t have the energy to complete.

But what I do is not the same as who I am. I had a very clear idea of who I wanted to be as I grew into adulthood. I don’t know that I am that person, or even close to that person. You build a life around yourself and the idea of what kind of person you are. But sometimes that person isn’t who you really are. Maybe the struggle is borne out of the fact that this life was built for someone else, a person I wanted to be but am not. My life is built for a person with energy and good health and time and patience and physical durability. I do not have those things. Any of them.

I used to see myself as a daughter and a sister and an aunt and a scientist and a traveler and a rock climber. I don’t anymore. I still am some of those things but it isn’t how I view myself.
My identity has become inextricably intertwined with mastocytosis and the science of mast cell disease. I talk about my health constantly. This is partly as a coping mechanism. It is also partly reflex. I subconsciously perceive myself as a mast cell patient first.

I don’t know when that happened and I don’t remember how it was before. All I know is that somehow this disease superceded all of the things that I was in my own mind and I didn’t even notice.

From the deep

In early June, I went to visit my nieces in southern NH for the weekend. It was a fun weekend. Being Auntie Lisa is the best thing about me. I’m a good mix of “let’s make a big mess and clean up real quick before your mom gets home” and “DANGEROUS! TOO DANGEROUS!” I travel with a heated blanket for my joint and muscle pain. My nieces love me, but the “hot blanket” definitely ups my stock.

I think everyone who has ever seen my name at this point likely knows that my lower GI tract is a disaster. I have massive nerve damage and a colon that is prone to herniation and bleeding. I have had many scopes, biopsies and surgeries. I had an ostomy and resections and may eventually end up with another ostomy. My colon is shorter and there isn’t a ton of rectum left.

Last year, I had surgery to take down the ostomy and reconnect the higher colon to the rectum. The process of trying to nail down what would work and what was best for me was fraught with frustration, anger and grief. There was a general feeling that the colon should not be removed in its entirety because “if they were wrong, they couldn’t put it back.” There really isn’t any case literature to look to here; we were figuring this out as we went along.

My biggest concern with leaving part of the colon in was that it would not be short enough to reasonably prevent impaction. I was worried it could land me right back where I was before the ostomy, when I needed to literally bowel prep myself in order to pass any stool. My abdomen was always swollen and hard, my abdominal pain was serious and my rectal pain was really bad. It was an awful time. This was also before I understood mast cell disease well and a lot of what I was eating and doing made the pain and swelling worse. It was truly miserable.

Last month, while I was in NH being Auntie Lisa, I realized that my rectum was really hurting and something was wrong.

I will spare you (and me) the gory details but it took me seven hours of actively trying to stool. Seven hours of pain so bad that at points, I was literally screaming. My lower GI tract was very, very swollen. And in that seven hour period, I realized my colon had herniated again.

It has been six weeks since that day. Swelling has gone down and bleeding isn’t awful. But it is definitely herniated. The pain is bad.

It’s funny how fast you forget how bad something hurts. I’ve had persistent abdominal pain and bone pain for years. But it wasn’t this pain. My mind walled off the memory. I remember what happened. I just didn’t remember how bad it hurt.

I saw my GI doctor today. We talked about my symptoms and then about my rectum for a while. In the middle of the conversation, I started crying. “If this pain would just stop, my life would be so good,” I sobbed. I cried because I was in so much pain and have been in so much pain and also because when pain is this bad, you can’t think about anything else.  You can be grateful for things but you can’t appreciate them.  There just isn’t enough energy left.  The pain takes everything.

I manage the pain as well as I can but really I am still in quite a lot of pain. It was only in relating this aloud to someone who has seen me at my very worst that the enormity became evident to me. This is such a big thing.

And there is this other peculiar thing: that when I’m in pain, no matter why, it makes me think of all the other things that cause me pain, too. Every fear and worry and regret becomes vivid once more, all together. Those wounds open again, like air hungry mouths that finally surface from the deep. And then it’s not just my bone pain and my abdominal pain and my rectal pain and my stomach burning. It’s also that I never went to medical school and haven’t had kids and that my dog is old and that people can become memories so, so fast.

I have tried to tell myself that I can live like this because the alternatives are unpalatable. But I don’t think I can. I will have to do something about this and the very thought of it makes me shudder.

Reinforcements

Hey, MastAttackers –

Many thanks to all of the people who have offered to volunteer their time and knowledge to help out with MastAttack.  I am really excited to have a robust team to keep things moving along.

If you emailed me to offer assistance, I have your email address and will be contacting you in the next few days.  If you reached out to me another way (Facebook message, Twitter, or comment on Facebook post), please send me your email address. This will make it easier to communicate and share information.

Hope everyone is having a safe weekend!

Lisa

United States of Meth

Last week, I tested positive for methamphetamine.

I was on the red line train on my way to work, looking through my emails to pass time. There was a note from my health care system that a test result had been added to my patient profile. I clicked over and was horrified to discover that my urine had tested positive for meth. I burst into tears and called the office of the ordering physician in sheer panic.

Fear raises my blood pressure and elevated blood pressure decreases my hearing so I walked through Cambridge for a few blocks trying to will myself to hear the admin on the other end. I did several really stupid and unhelpful things to try and improve my hearing (including switching my phone to the ear I haven’t heard out of in six years and then covering that same ear) before finding a doorway to duck into down a quiet side street.

I think blubbering is too strong of a word to describe me here but I don’t know what word means one step down from blubbering so I’m going to call it “light blubbering.” I was light blubbering while telling the admin that I saw the positive test on my profile and that I wanted to know how to get it straightened out. She asked if I wanted to leave a message for my doctor.

I did, but wasn’t really sure how to phrase this. Finally I said (while light blubbering), “What should I say?”

The admin seemed equally perplexed and finally said, “I don’t know… maybe ‘I don’t use meth’?”

So that’s the message I left.

In July of 2013, I went to the ER with severe obstructive bowel pain. The kind of pain that feels like I am being repeatedly kicked in the stomach while at the same time my GI tract is being twisted.  It was two months after I had had my ostomy placed. My incisions weren’t even completely healed. I was having a bad reaction to pain and called the services for my surgeon and mast cell specialist on the way over. I arrived at the emergency department of the hospital where I had just had surgery and where I was seen several times a month. All of my records were there.

There were notes that if I presented in the emergency room degranulating/having anaphylaxis, to administer IV Benadryl, IV Pepcid and IV Solu-Medrol, and if I was in pain, to administer hydromorphone, one of the drugs of choice for mast cell patients with serious pain. I was puking from the reaction to the pain, tachycardic and flushing in waves a deep red like some sort of underwater creature that changes colors to tell other animals what it is feeling. Like a delicate jellyfish that communicates its intentions while vomiting and screaming every time I threw up because the tensing pulled on my incisions.

I guess my jellyfish routine sucked because in a very short period of time, I was embarrassed by several medical professionals in quick succession as a direct result of explaining that fentanyl and hydromorphone are the drugs of choice for mast cell patients. When they were collectively done treating me like garbage, the nurse ripped the IV out of my arm and I left without pain management. If you ever want to see a provider determine that you are worthless, lying, drug seeking scum, just tell anyone in an emergency department that you can only take fentanyl or hydromorphone for opiates. This is so true that there are memes about it.

Last month, the admin at one of my doctor’s offices told me that a new state law requires that certain patients provide urine samples to be tested for drugs of abuse. That’s fine. No problem. I have done this voluntarily in the past and I have nothing to hide. I went to the office, peed, and turned in my little cup to the nurse. I was not at all concerned that I would test positive for drugs of abuse because I don’t take drugs that aren’t prescribed to me. Then I tested positive for meth and just about had a heart attack on the red line train.

I think most people know that there is an ever worsening addiction epidemic in these united states. When I worked in pharmacy, I interfaced regularly with people struggling with addiction. People would come in with prescriptions from stolen prescription pads, or call in their own prescriptions pretending to be their doctor, or add a zero to the end of the quantity on a real prescription. I worked in a 24 hour pharmacy the week my state started imposing limits on the amount of pseudoephedrine that could be bought by a person to mitigate the ballooning meth problem. I was present when robbery for oxycontin became a looming threat in all pharmacies. I went to a high school that has had a huge number of former students die from overdose or complications of drug abuse. I am very aware that there are people who seek drugs for illicit use. (Disclaimer: I am not disparaging people with addiction. Some of the people closest to my heart are in recovery.)

Working in pharmacy, I also saw a lot of people who were in a tremendous amount of pain and who suffered because of others who abused drugs, especially prescription drugs. A few years later, I would also learn how embarrassing and difficult it is to be a chronic pain patient. The nurse who ripped out my IV and threw me out of the emergency department was a symptom of this larger system that sees everyone who needs pain management as an addict or as too lazy to work other options. Every single time I have to admit that I am in pain (even if I don’t need medication for it), I am forced to assess how likely it is that they think I’m spinning a larger tale to end with a prescription request.

The legislation that requires urine tests from pain patients reinforces the idea that if you have chronic pain and you don’t have cancer that you aren’t trying hard enough to find other ways to manage it or that you are selling/abusing/doing something illegal with your meds. I have spent years getting to a point where I can function at a moderate level much of the time. I exercise almost every day, either walking a few miles, swimming, or doing 60-90 minutes of advanced yoga at home. I have used massage, meditation/visualization, acupuncture, reflexology, and supplements like turmeric, magnesium and vitamin D to bring my pain level down. I have tried diets (some of which helped, most of which didn’t). I have tried showering in cold water to decrease inflammation. I take lots of meds to reduce inflammation and pain associated with my disease. I have been in pain a long time. I have tried pretty much everything. It’s not always possible to manage pain without use of pain medication.

While investigating false positive urine tests, I came across a lot of stories. There has been a story circulating on Facebook for a while about a woman who tested positive for meth during her labor and delivery. This ushered in a nightmare situation where a woman who didn’t use illicit drugs was separated from her baby while CPS determined whether or not she could bring the baby home.

I also found some other stories. A few were about newly implemented guidelines for when pharmacy personnel should suspect drug abuse. These guidelines include such things as going to a new pharmacy (though pharmacies will not tell you over the phone if they have controlled substances on hand); changing pharmacies (because no one ever moves); and paying cash (because insurance never rejects valid claims). There were some more ridiculous rules of thumb for how to identify a drug seeker. I fit at least half of them.

I spent most of the day after seeing this positive test result combing through literature on medications that can cause false positive results for drugs of abuse. Ranitidine can cause a false positive for methamphetamine. Even knowing this, I was still terrified. Even though I know I don’t use meth, I was still terrified. Even though I felt sure this would get straightened out, I could not stop worrying about it.

I called the office again the following morning because I had not heard back yet. The admin asked if I wanted another doctor to call me so I wouldn’t have to wait as long. “No! No,” I said, the second ‘no’ in a more forced-relaxed tone of voice. You know how you know something sounds bad but you just need to slip it in anyway and you can’t scare anyone because if you do (insert catastrophe)? This was one of those times. Is my voice the appropriate amount of nonchalant? Is this the voice of a meth user? “I have a really complicated medical history so it’s easier if I just talk to providers who know me,” I finally said, the words wavering a little more than I wanted. “I’ll just wait.”

The office NP (who is lovely and knows me) called later that day. She told me that no one called me because they knew it was a false positive. I exhaled two days’ worth of anxiety as she chatted cheerily. She hung up and everything was fine and I needed a nap to recover.

I have actual nightmares about medications and treatments that help keep me stable being taken away because my doctor retires or moves away or just doesn’t want to give it to me anymore. This terror is reality for most rare disease patients and probably plenty of patients who don’t have rare diseases. All of us, even those with solid care teams, are at the mercy of these providers and their personalities and these systems that see us as numbers and statistics that can’t really be in pain for so long.

I would like to say that I think things are improving or will improve for people like me but the truth is that I doubt that will ever be the case. Not every person who needs pain management is drug seeking but you would never know that in these united states.

Take home points: November 2015

Immunoglobulin free light chains: A possible link between autoimmune disease and mast cell activation

  • Light chains are part of antibodies that fight infections and responds to allergens
  • Free light chains are pieces of antibodies that broke off and do not work as antibodies
  • Elevation of immunoglobulin free light chains has been linked to many diseases, including lupus, rheumatoid arthritis, inflammatory bowel disease and food allergy
  • Free light chains correlate with symptom severity and flares in some conditions
  • Free light chains may be able to activate mast cells without IgE involvement
  • Free light chains may be the link between mast cell activation and autoimmune disease

Explain the tests: Complete blood count (CB) with differential and platelets (Part One)

  • A complete blood count (CBC) counts white blood cells, red blood cells and platelets in blood
  • It also looks at the shape, size and variation in size of cells

Explain the tests: Complete blood count (CBC) – Low red cell count (Part two)

  • Mature red blood cells live in the blood for 100-120 days
  • Hemolysis is when red blood cells burst and a little bit of hemolysis is normal
  • Red blood cells transport oxygen from lungs to tissues
  • Red blood cells have hemoglobin inside them
  • Hemoglobin is a protein with iron in the middle and it carries oxygen
  • Low red blood cell count or hemoglobin is called anemia
  • Red blood cell count can be low for several reasons, including nutritional deficiency and production dysregulation in bone marrow
  • Mast cell patients often suffer from anemia of chronic inflammation, which can cause low red count
  • Patients with inflammatory bowel disease can have low red count due to bleeding
  • Swelling of spleen can cause low red count