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Going to the Emergency Room as a Chronic Illness Patient (and How to Make the Experience Better)

I want to talk about a subject that every person with Chronic Pain is familiar with and probably dreads…

Going to the Emergency Room

There are several reasons why people with Chronic Pain in particular hate going to the ER.  Here are some of the top reasons that have been shared with me over the years.

1. Fear of Being Labelled a Drug Seeker

This is perhaps the top reason most people with Chronic Pain list when it comes to the Emergency Room. Even when you live with a sure diagnosis of a medical condition, if you arrive at the ER in pain for whatever reason, you run the risk of being labelled. This is especially true if you already take narcotic pain medications to treat your condition.

You can present with symptoms entirely unrelated to your chronic illness, but doctors still question you about your reason for being there. If you happen to show up with pain for a reason that’s obvious (a broken bone for example), you still have to deal with some measures of disbelief – it’s happened to more than one person I know. In fact, one friend was asked if she had broken her hand deliberately to get drugs. Scary!

If the reason for your pain isn’t immediately obvious, your risk for being labelled increases and you may even find your treatment to be slower than others around you. Doctors seem to believe that since we already live with Chronic Pain, we can certainly manage “a bit more” without issue. This is a long-held misconception that needs to be addressed in hospitals around the world.

2. Fear of Needing More Pain Medication

You wouldn’t initially think that needing pain medication would be an issue, but when you live with Chronic Pain, you’re probably already taking a drugstore’s worth of medication to manage symptoms and side effects.

Adding more pain medication to our bodies may help in many ways, but we tend to run the risk of more side effects than other people, thus adding to our stress. I happen to be sensitive to Morphine – I have problems breathing, and get severe body twitching, nausea and itching. While all those things can be treated with additional medications, why go through all that when Fentanyl works fine?

The problem with this is when I tell doctors I can’t take morphine and the reasons why, it makes me sound like a drug seeker, saying I would like Fentanyl instead. My requirements are legitimate but it can come out sounding very suspicious. Stressful!!

3. Fear of Being Out of Our Comfort Zone

I hate to go to the Emergency Room and will do everything in my power to prevent it, even living with increased pain, because of the stress of being out of my comfort zone – my home. I know I’m going to be subjected to sounds and lights that are difficult for me to manage in the best of circumstances.

I’m going to have to wait for long periods of time to see anyone, my treatment may be delayed if the doctor has concerns about my use of Opioids for pain management (see above), and my pain levels and stress are going to rise the longer I am there. This is in addition to whatever the reason is that brought me to the ER to begin with. I’m already stressed and these added things just make the whole situation more challenging.

4. Fight or Flight Reaction

If I end up with a doctor who doesn’t believe my pain is legitimate, my adrenaline or “fight or flight” reflex becomes engaged. I suddenly find myself having to defend my original illness, along with dealing with the reason I’m there to start with. I don’t want to get into a fight with a doctor if I DO need pain meds – I want them to help me by recognizing my need is real.

For this reason, if treatment is taking a long time, some people choose to “give up” and just go home to live with more pain. This then backfires when you truly can’t handle the pain on your own, and back you go, like a yo-yo. It reduces your credibility as a patient. Unfortunately, when you are treated badly by the ER doctors, it’s hard to sit by and put up with that. Stress increases again, and with that stress comes more pain…which causes more stress.

It’s a circle of misery that could easily be handled if doctors would stop and listen to us right from the start. Too many times, we’re not given the opportunity to speak up and share what’s going on once they find out we have Chronic Pain. You could have a broken arm with bones sticking through, but as soon as doctors hear “Chronic Pain”, they seem to harbour certain assumptions about you.

5. Wondering if My Pain IS Legitimate

When you live with Chronic Pain for whatever type of condition, there’s a good chance you’re going to have multiple symptoms of your illness. If that illness is flaring up beyond your control and you go to the Emergency Room for help, you may question yourself on whether you really need to be there.

Sure, you live with pain daily, but is this so urgent that your doctor can’t take care of it in the next day or so? Well, it’s a tough call, but I’ve always believed that if you are in enough pain to consider going to the ER, you should probably GO to the ER!!

Now is not the time to second guess yourself. For example, I once experienced chest and jaw pain that was different from anything I’d felt before. I didn’t think I was having a heart attack, but the pain was unbearable and I knew it wasn’t going to respond to heat packs or ice packs.

It turned out I was having a severe and unusual reaction to a new Diabetes drug I had just started and I was hospitalized for 3 days while a bunch of tests were run, and then to let me rest on IV’s and pain medications. In hindsight, nothing bad would have happened to me if I’d stayed home, except I’d have been in excruciating pain for days. I would have gone to see my Family Doctor asap, but I’d also have put myself in misery for days that I didn’t need to be in pain.

By following my instincts, I received top notch care and was treated legitimately like a person who was in pain and needed help.

Ways to Improve Your Emergency Room Visit

There are several things you can do in advance to help improve your visit to an Emergency Room.

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1. Make Sure You Have a Regular Family Doctor

Even if your ER visit is for something completely unrelated to your Chronic Pain, having a regular Family Physician shows that you are dealing with your health on a regular basis. This helps to legitimize yourself as someone who cares about their overall health and is doing everything they can to help themselves.

What happens if you don’t have a Family Physician? In some countries, finding a Family Doctor is next to impossible. Attending the same Walk-In Clinic or Urgent Care Centre is the next best thing you can do for yourself, along with getting your prescriptions written by the same location.

2. Try to See Your Family Doctor First

If it’s at all possible, try to see your Family Physician before going to the ER. If you can, take a letter from the doctor with you explaining his findings and recommendations. This can help to speed up service in the ER (though it doesn’t always work).

Depending on the circumstances, this shows you’re using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication.

3. Get Your Prescriptions Filled by the Same Pharmacy

One way to ensure legitimacy regarding your medications is to have them all filled at the same pharmacy. This allows doctors to do a quick search to make sure you’re not getting multiple prescriptions filled by multiple doctors.

4. Bring a List Of Your Medications with You

At a minimum, try to bring a list of your medications and dosages with you to the ER. If possible, take the actual bottles with you. This goes a long way to showing the ER doctors that you have legitimate health concerns, and that you know what you’re taking and why.

You might want to consider having a letter from your doctor on hand that outlines your Chronic condition and the treatment plan you are under. If you are going to the ER because of a problem relating to your condition, it can help to speed things up for the doctors if they know what’s been done in the past.

5. Co-operate with The ER Personnel

This may seem like common sense, but when we’re in a panic because of pain and/or injury, we tend to forget our normal sensibilities. Try not to become demanding when you get to the Emergency Room. You’re not the only one there and you have no idea what the other patients are going through.

Your pain or injury may very well be serious, but will be triaged appropriately according to the nurses. YOU might not agree with their assessment but without knowing the big picture, it’s impossible for you to say you’re the most critical person to be seen, even if you feel that way.

Work with the ER personnel, stay calm and cooperative and you’ll generally find yourself being treated respectfully by nurses and doctors who genuinely care about your health and well being.

Conversations with Emergency Room Doctors

For an excellent list of ways to communicate with the ER doctors to ensure you get quality care, this article from Practical Pain Management is a great patient resource. It provides you with things you should and shouldn’t say to make your ER visit most effective.

Speak Up!

I do a lot of Patient Advocacy volunteer work and was speaking at a conference full of doctors. I told them of being mistreated as a drug seeker at one Emergency Room I went to when the pain from my Atypical Trigeminal Neuralgia was overwhelming me. The doctors there assumed because I was in pain, pain medication is what I was looking for.

I wasn’t seeking pain meds (they wouldn’t have worked) but treatment in another form (I had the protocol written down from a specialist), so it was especially frustrating to not be heard.

One of the doctors at the conference spoke up and told me that on behalf of doctors everywhere, he apologized for that kind of treatment and said that it was unacceptable. He said that all ER personnel need to check themselves at the door before bringing in attitudes like that…his belief is that if someone presents at the ER in pain, they are there because they’re in pain. It’s up to the ER docs to determine if it’s physical or mental and how to best treat the patient, no matter what.

I was so touched by his comments…and I told him that the best thing he and everyone else in that room could do was to believe their patient. Yes, there are going to be drug seekers, but the majority of people who show up at the ER don’t want to be there, but have no choice. Believe them, listen to them and help them. It’s really that simple.

There Is Always Hope


Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com.  She also writes for The Mighty,  PainResource.com and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC.  She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie. 


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There are many fears and anxieties with facing the Emergency Room when you have chronic illness. Find out why people with chronic illness often have a hard time going in, and steps you can take to overcome these fears and have a better experience dealing with ER doctors in this post from Zebra Pit contributing writer, Pamela Jessen.
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Dental Care And Chronic Illness

I am terrified of the dentist!!! I have a wonderful care provider who is gentle and kind but having to go see him, even for a cleaning, requires medication for anxiety. I was there recently for a cleaning, the right side one week and the left side the next

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Here I am, high on Ativan, with my warm blankie and a bolster under my knees for comfort. You can see my look of trepidation!

And now to work!

Dental Care and Chronic Pain

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Despite my fear, I do this because it’s good for my health. It can be painful in several ways, though. It reminded me how even “normal” things like the dentist aren’t easy when you live with Chronic Pain.

Here are a few tips to make your next visit easier. 

General Thoughts

Get comfy!

Ask for a blanket and something for under your knees to help you feel more comfortable in the chair. Most dental offices are happy to provide these items. If there are headsets available, use one, or bring your own music to help keep you distracted. 

Use sedation if necessary. 

I use Ativan to help relieve my anxiety and it works wonders. It helps me stay relaxed during the visit and then conveniently helps me forget the visit when it’s over. You do need someone to drive you there and back again, but that’s a small price to pay for not being stressed out!

Keep regular appointments

By going for regular appointments, you lessen the amount of work that needs to be done at each cleaning and you catch any other problems sooner rather than later. Follow the schedule set by your dentist. 

Maintain your oral health at home

Take care of your oral health at home with regular brushing, using a brush designed for your requirements (soft or medium bristles, spinning or regular, etc.). Use mouthwash to help protect your teeth and if you suffer from dry mouth (often a problem for those who live with Sjogren’s Syndrome), use a product designed to keep your mouth moist. 

Floss your teeth with every brushing. It’s important to remove plaque that builds up and flossing is the best way of controlling this. 

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Limit Starchy and Sugary food and drinks

These items can lead to decay so it’s important that you limit them or use them in moderation to preserve your dental health. 

Talk to your dentist about mouth pain

If you are experiencing any type of mouth or jaw pain, talk to your dentist to see if you are developing TMJ (temporomandibular joint). This painful condition can be treated in various ways including medication, a mouth guard or possibly surgery. 

Be Aware Of Periodontal Disease

Periodontal disease can have serious effects on your health. If you notice that you have any of the symptoms of gum disease, call your doctor or dentist.

  • Red, swollen, or tender gums.
  • Bleeding when brushing or flossing.
  • Gums that are pulling away from the teeth.
  • Sores or colored patches in the mouth.
  • Persistent bad breath or a bad taste in your mouth.

Special Health Considerations*

Diabetes

Diabetes is a disease that affects your body’s ability to process sugar. It can be managed with treatment. Left untreated, it can cause many kinds of problems, including some in your mouth. These include:

  • Less saliva. This can make your mouth feel very dry.
  • More cavities. Saliva is needed to protect your teeth from cavities.
  • Gum disease. Your gums can become inflamed and bleed.
  • Slow healing. Cold sores or cuts in your mouth may take longer to heal.
  • Infections. You are more likely to get an infection in your mouth.

If you have poor oral health, you are more likely to get diabetes. Gum disease is an infection. Infections cause blood sugar to rise. If you have gum disease and don’t treat it, your blood sugar could increase. This can raise your risk of developing diabetes.

Cardiovascular problems

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Your mouth contains hundreds of different kinds of bacteria. A healthy mouth has the ability to fight off the bad bacteria that cause disease. But when you have gum disease, an infection, or another problem in your mouth, you lose that ability to fight off those germs.

Many studies show an association between gum disease (also called periodontal disease) and cardiovascular disease. The bacteria in your mouth can cause certain types of infection and inflammation. This research suggests that heart disease, clogged arteries, and even stroke could be related to these types.

Another cardiovascular condition linked to oral health is endocarditis. This is an infection in your heart. It is usually caused by bacteria in the bloodstream that attach to weakened areas of the heart. These bacteria could come from your mouth, if your mouth’s normal defenses are down.

Cancer

More than one-third of cancer patients experience problems with their mouth. Cancer and its treatment methods can weaken the body’s immune system. This makes you more likely to get an infection, especially if you have unhealthy gums. They also can cause side effects that affect your mouth. These include:

  • Mouth sores
  • Dry mouth
  • Sensitive gums
  • Jaw pain

HIV/AIDS

HIV and AIDS also weaken your immune system. That puts you more at risk of infections or other oral problems. It is common for people with HIV/AIDS to develop issues in their mouths, including:

  • Mouth sores
  • Dry mouth
  • Thrush (yeast infection of the mouth)
  • White lesions on the tongue
  • Serious gum disease and infection
  • Mouth ulcers

Osteoporosis

Osteoporosis causes your bones to become weaker and more brittle. This could lead to bone loss in your teeth. You could eventually lose teeth because as they become weak and break. In addition, some medicines that treat osteoporosis can cause problems in the bones of the jaw.

Sexually transmitted infections

A number of different sexually transmitted infections (STIs) can cause symptoms in your mouth. These include:

  • HPV (human papillomavirus) – Some strains can cause warts in the mouth or throat. Other strains can cause head and neck cancers. These can be hard to detect. They usually develop at the base of the tongue, the tonsils, or the back of the throat.
  • Herpes – Herpes simplex virus type 1 causes cold sores and other mouth lesions. Type 2 usually causes blisters in the genitals. But both types can be passed between the genitals and mouth. So type 2 could also cause painful blisters in or around the mouth.
  • Gonorrhea – This bacterial infection can cause soreness and burning in your throat. Sometimes you may see white spots in your mouth, as well.
  • Syphilis – In its primary (first) stage, you may get sores (chancres) on your lips, tongue, or other places inside your mouth. The sores may go away, even if left untreated. But you will still have the infection and can spread it.

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Preterm birth

Severe gum disease has been linked to preterm labor and low birth weight in babies. Research suggests that oral bacteria can affect the placenta and interfere with the growth and development of the baby. It also shows that a severe oral infection could trigger labor too early. This could cause the baby to be born prematurely.

Hip Replacement

It is often advised that anyone who has had a hip replacement undergo a course of antibiotics prior to having dental work done. This is to prevent bacteria from entering the blood stream, which can cause problems such as infection with your hip replacement. Talk to your dentist to see what they advise. 

Conclusion

Oral Health Care is important for everyone, but is especially critical if you live with Chronic Illness. See your dentist as recommended and don’t be afraid to call if you notice problems. If you are someone like myself who has a fear of the dentist, ask about solutions such as Ativan, or IV Sedation to make your appointment easier. Don’t let fear put you off from having the mouth and smile of your dreams! Remember…

There Is Always Hope

Resources and Related:


Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com.  She also writes for The Mighty,  PainResource.com and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC.  She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie. 


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Need a few tips on how to survive the dentist with chronic pain and anxiety? The Zebra Pit had them! You'll also find condition specific care tips for a wide range of conditions in this post and some great resources where you can find out more.
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MCAS & Doctors Disbelieving Patients

This is one of those posts where I try to reconcile what happened at my last doctor’s appointment, which means it is stream of consciousness and I am pretty angry. It was my appointment with an allergist and mast cell/eosinophilic specialist here in Cincinnati. It was my initial consultation with this doctor and while I know him by reputation, I have never met him in person. It takes me several days to come down from these types of appointments because of my medical PTSD. Specialist appointments are often intensive, but for a condition like mast cell activation syndrome, which is especially complex and can include multi-systemic symptoms, these appointments are marathon sessions of questions, examinations and a long list of follow-up tests and procedures that are hard to take when you’re healthy, let alone experiencing daily chronic fatigue, pain and other symptoms. Add PTSD to the mix and it can take weeks to recover from the initial appointment alone.

The appointment lasted two and a half hours. Before ever meeting the doctor, I spent 30 minutes with a nurse and another 30-45 minutes with a resident who did my intake. The resident asked about my mask. She wanted to know if I had some sort of viral infection and for a moment I started to panic, wondering if I might be in the wrong office with the wrong doctor, but once I explained that I thought pollen responsible for kicking off my summer of misery, she got the gist. I still can’t believe that if she’d worked in that department for any length of time she wouldn’t have seen other patients wearing them, but I decided to let it go. She was only a resident and not the doctor I was there to see.

She did my history, covered all my symptoms, looked through all of my symptom pictures and recorded what types of substances and triggers I got them from. We talked a little about why I think I have gastroparesis and how my reactions can contribute. I brought in extensive notes on my history with allergic reactions, what I think I’m genuinely allergic to, what types of symptoms I have, my triggers and what’s been happening since last spring (all of which you can read about here). She contributed several comments to the conversation that were both astute and reassuring. Everything seemed to be fine and we appeared to be on the same page.

She left to get the doctor and I got antsy, so I wandered around the exam room and took a picture of the grounds from the window with the rain falling. I was excited that it was raining and that I might get a break from the pollen and my mask. I was looking forward to getting out of there. When the doctor came in, I was perched on the window ledge. I came forward and shook his hand and I thought I was smiling, but he kept frowning at me and I immediately questioned if I’d done something wrong. He asked me to sit down and I really didn’t want to, but I thought maybe he’d feel more at ease if I complied, so I did.

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He had a lot of questions for me and my nervousness grew to full panic. He disagreed that I was reacting to chili powders and peppers at all and that they might be anaphylactic or causing breathing problems (he said it was my POTS, which is part of it, as it gets really hard to control when I have a reaction, but what MCAS doctor shouldn’t know this already and should I have told him only the things that were related to my MCAS and not HOW my MCAS affects my POTS, as well?). He started to doubt entirely that I had any problems with food at all, even though I get severe reflux, headaches, runny noses, breathing issues, diarrhea, hives and more right after eating specific foods. He wanted to blame any food related issues entirely on my possible gastroparesis, even though the low FODMAP diet had all but corrected my problems prior to this major flare with MCAS and then I was even reacting during the testing phase for the low histamine diet while I was seeing for sure what I needed to eliminate. He also didn’t believe that I’d had a reaction from the vibration at the last few concerts I went to, even though I was super careful to make sure I wasn’t exposed to anything else at my last. While he seemed to believe that all my other symptoms were real and valid and that I very likely do have mast cell activation syndrome triggered by pollen this spring and he did put in for testing, I came away feeling like once again I was being accused of lying and trumping up my symptoms to try and get something or pull the wool over their eyes somehow or something, but frankly, why would I? What would I have to gain by lying about any of this? Why did he feel the need to challenge me on these things?

Of course I started feeling defensive and panicked, which means I started to dissociate and my memory went to shit and my cognitive abilities were for shit so I couldn’t even adequately argue for myself. All it would have taken was a simple “if that’s the case, then how come all my gastric symptoms resolve when I don’t eat these foods and come back when I do?” UGH. I just want to pull my hair out with the frustration of it all.

It’s not enough to type out 5 pages of personal history, allergens, triggers, provide pics, and bring my husband along for support. I guess I also have to come up with every possible objection and every possible way they might call me a liar or try to pawn me off on another specialist and plan for every defense of those possibilities beforehand, too because obviously my initial efforts are never convincing enough for these “experts.” As if I don’t KNOW MY OWN BODY and what happens to it. AS IF I DON’T LIVE IN IT AND EXPERIENCE EVERY MOMENT. It’s like I’m 10 years old again living in a household full of gaslighting narcissists, only these fuckers are in charge of my healthcare and they get to decide whether or not I get to live the rest of my life in agony or in relative comfort.

Perhaps I don’t have anything to be up in arms about since I’m getting the testing I need and was assured that they don’t give up after the first round. He also upped a couple of meds right out of the gate and talked about a couple of possible treatment strategies based on test results. It just didn’t feel quite so satisfying as if they would have just said, “Okay, we have all the information you’ve given us. Let’s run some tests and go from there” rather than grilling me like I was a witness to a crime and my testimony meant the electric chair for the accused. He even talked about treating my stomach symptoms, so why grill me like that? Perhaps he was waiting for an apology: Gee, I’m sorry if I don’t present like every other patient doc. I’m a FUCKING ZEBRA. That’s kind of our trademark.

Not surprisingly, I’ve been a terror these last 5 days and writing this has done nothing to improve my disposition. I was hoping that I would see that it was simply my medical PTSD causing me to blow this all out of proportion and that I wouldn’t harbor any ill feelings toward the doctor, but this analysis has caused no shift in emotion or viewpoint. I do understand that I might not be quite as upset if I didn’t have PTSD. I understand it probably wouldn’t stay with me so long. But I don’t have to have PTSD to be offended by the fact that yet one more doctor in a very long line of doctors simply chose not to believe everything I said. They judged my character and somehow found it lacking, wrongly so. Anyone is going to be offended by that.

It also makes me question if he completely understands how MCAS works. A lot of us get to the point where we react to almost everything and can eat or experience very little without a reaction. Why is it such a surprise to this guy when it happens to me? Am I really in safe hands with him? Is he really the expert he touts himself to be? Maybe he should be off playing with eosinophillic cells and leave the mast cells to the likes of Afrin and his ilk. As he’s the only guy in Cincinnati, I’m certainly not giving up on him yet, but I’m certainly reserving judgment. I haven’t seen any brilliance from him yet, but I can’t afford to be that picky, either. If necessary, I will travel, though. I’m not giving up on getting myself the best possible treatment for this condition and I’ll only put up with being treated like a liar and a fake in the process by someone who is of questionable expertise in this field for so long. Of course I want to give him the benefit of the doubt knowing myself as well as I do, but I am definitely reserving judgment.

I will be working on my testing over the next couple of weeks (wouldn’t you know pollen counts just took a nose dive and I’m suddenly feeling much better, so I have to get things riled up, first by going off some of my meds). Then things have to be mailed off to special labs around the country so it may be a while before I have test results, but as soon as I do, I’ll let you all know how things turn out! Thanks for putting up with my ranting! xx

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Dissociation in the Doctor’s Office: Complex PTSD & White Coat Syndrome

Yesterday, I had to have the kind of routine foot surgery that almost makes a zebra feel normal. I had an ingrown toenail that had to be partially cut out. As I lay here recovering from this minor foot surgery yesterday, I marveled at my lack of preparedness for its aftermath, wondering if the part of my brain that usually kicks into hyperactive planning and preparing for these things has somehow managed to shut down or malfunction by some twist of brain fog. I mean, why not? It’s taken just about every other cognitive skill from me at one point or another. I was just telling my husband that I can no longer be our cruise director (my cutesy way of saying “organizer of activities”) because it not only depresses me to see the sheer volume of things I would like to do but cannot going on about the greater Cincinnati area, but because it becomes a massive time suck because I’m just so damned slow at everything. It also has little payoff, frankly. My one day a week out of the house is usually spent on grocery shopping, running errands, and medical appointments.

No, this is something else and I realized yesterday, it feels an awful lot like the PTSD symptom of dissociation. Maybe I slipped into a bit of shock during the procedure yesterday. The doctor did question if I was okay, sitting quietly, staring at my foot the way I was as he slid a scalpel under my toe nail and began cutting away nail as the blood pored all around it, but I laughed and assured him it was nothing. It felt like nothing. I thought was I was having a hard time processing was the fact that I could actually have such a procedure without any pain whatsoever. The only thing that hurt was the injection of local anesthetic, and even that didn’t hurt as badly as he seemed to indicate it would. By the time I was through the first idea on a list of reasons why that might be, my toe was actually numb.

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I had been concerned the lidocaine wouldn’t work. I have a long history of local anesthetic failures, from dentistry to kidney biopsies in which I have suffered on the table (or chair). But the doctor explained given the very nature of the toe, it’s almost impossible for it to not hit the nerve. We also figured my poor circulation in my lower half could actually pay off in this instance of so little tissue, along with all the fascia therapy I’ve done and he seemed to really dig my theory about myofascial dysfunction being a culprit in the mechanisms which prevent some zebras from benefiting from or reacting typically to anesthetic. Of course, resistance  local  anesthesia can also be genetic but in that case, it simply has no effect at all and I know I’m not in that group, as given a high  dose and enough time for it to move sluggishly through my tissues, it will do its job.

footBy the time my toe was numb, so were my emotions. I was preparing for a whole different experience. I was fascinated by my numb toe, I wanted to contemplate that, ruminate on the possibilities, but I didn’t really “feel” anything, physically or emotionally. I might as well have been someone else, a medical student maybe, watching the whole thing with analytical detachment, from having to hold down my own shaking leg to observing rivulets of blood pouring down my toes as he apologized to watching him mop up all that blood to reveal the canal of bloody meat he’d created in lieu of nail. It’s like I’d put on a ball gown to go to a ball game and didn’t understand why I couldn’t get comfortable with my surroundings.

What I realized later is that this numbness follows me to most of my doctors visits, whether I expect there to be physical pain or not. I’ve known for some time that I suffer from white coat syndrome as a result of all the years of disbelief and derision I’ve dealt with, North to mention the ones who carried out painful procedures despite my protests of pain because they didn’t believe local anesthetic resistance was a thing. This is the first time I’ve put together that what’s happening is dissociation.

It certainly makes sense. Given that I’ve suffered complex PTSD since childhood, I suspect I’m an expert at dissociation. It makes me really good in a crisis and shit at everything else. I’m so good at it, been doing it so long, I don’t even recognize what it is. I don’t even think my former therapists knew I did it because I’m so good at hiding it. In large part, it’s kept me safe and sane all these 46 years, this tendency to shut down and act as an observer, but it has no place in my medical care or my now safe and beautiful life.

Maybe that’s why I’m finally able to see my dissociation. I finally have a cadre of doctors who care and believe. I have real love and safety in my life and have for decades now, but I also had to stop muddying those waters by constant exposure to my toxic family. I also recently made the conscious decision to meet these issues head on. I am ready to face these truths. I fully believe all these things had to be necessary for these problems to come to light.

I suppose the next step is to figure out how not to dissociate every time I walk into a medical appointment. This is very important because when I dissociate, my memory fails to function correctly. I can neither supply doctors with sufficient answers to their questions because of poor recall than I can remember much of what they say after the fact. I have to rely on written instructions and notes and something always gets missed or lost in translation. Even if this weren’t a problem, the anxiety, sometimes full blown panic attacks that precedes these episodes are very hard on a person with multiple chronic illnesses that respond poorly to such hormonal fluctuations.

This is why it takes me days longer to recover from medical appointments even when they don’t happen to be physically taxing. Rarely can I ever walk away from a medical appointment without feeling  battled and bruised, even if nothing went wrong. It takes many appointments with the same practitioner before I can stop this cycle of panic attacks and dissociating. I was just getting there  with my PT therapist as our time together was coming to an end and I saw her 8 times over 3 months.

It also prevents me from making appointments to address situations that are quite necessary, such as with my gastroparesis, my MCAS, and even this stupid ingrown toenail. I fear going to a new practitioner so much that I will literally suffer for years with something that can be addressed in a single appointment.

It has apparently also begun to effect my ability to prepare for these things and the havoc they might create in their wake. I distinctly remember seeing flashes of what might be done to my toe in my mind weeks before my appointment. I’m not naïve about the ministrations required for ingrown nails. Instead of such visions prompting me to prepare, I took a thoroughly Scarlett O’Hara approach, so much so that tomorrow never came. It never entered my mind that removing part of my toenail would put me down for days, that I’d be taking foot baths for two weeks or that I even might have to curtail my workout routine. Mary Poppins (I was once called this by a former boss for my unfailing preparedness) sure as fuck fell down on the job this time.

The ironic thing is that for the first time in years, I had very little anxiety about this actual appointment. I didn’t even think about my white coat syndrome prior to my appointment. Was this because I was already in a dissociative state over the entire affair or has the run of good luck with practitioners and the hard work I’ve been doing to try to regain control over these neuroses started paying off? I suppose either or both are strong possibilities, but I haven’t come to any definitive conclusion.

All of this contemplation came about because of my desire to get on social media and whine about such an insignificant procedure and great appointment with an intelligent and knowledgeable doctor who introduced himself by his first name. Objectively I could see there was little to cry about. I deal with worse pain on any given afternoon. It was uncharacteristic. I’m not a fan of sharing every ache and pain online because it causes us to wallow and brings everyone else down. Don’t get me wrong. I’m highly sympathetic, I just feel like it does more harm than good, even if it might seem like a good way to bring awareness to invisible illnesses. But an ingrown toenail is common and not something which needs recognition, nor do I need or want pity, but I realized I was in fact feeling a bit traumatized over the experience,  which of course is laughable.

Laughable, at least until you realize it was traumatic precisely because I was triggered. Certainly the fact that it was a medical appointment was enough to do this, but I don’t think I really slipped into a dissociative state until the procedure began. It reminded me of all those times people have done things to me without actually being numbed, but I think it also touched on my childhood victimization, where I was forced to participate in my own torture in order to make it a little more bearable and safe. Holding my own leg down to prevent my shaking felt too much like holding onto the foot of the bed while my father beat me with a belt or taking my own clothes off for my rapist so he wouldn’t tear them from me.

I cry. I cry with the knowledge of just how neurotic I’ve become and how despite all the years I’ve spent getting to know the darkest, most destructive parts of myself to enable healing and growth, I am still blind to some of my own tricks. I cry because I berated and belittled my mother for being an expert ostrich with all things unpleasant while considering myself so brave for refusing to sugarcoat things, only to find that the old adage just might be right; we abhor in others the things we most dislike about ourselves. I cry because I realize no matter how old I get or how distant the trauma, I know I will always be a work in progress, forever chasing what looks like positive mental health. I cry because I have to release the safety of numbness and allow myself to embrace all the emotions that I have, be they good or bad, so that I can be a whole, healthy, functioning person. I cry because when I allow myself, I still feel pity for the little girl who endured so much before she even hit her 5th or 15th year.

Like all things in mental health, all I can do is find forgiveness in my heart for all of these imperfections and learn how to move forward, to do better. I’ll learn how to address the problem, and try to do better in the future. As I have been doing, so I will continue.

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Preparing for a Diagnostic Doctor’s Appointment

Editor’s Note: This post was reviewed and updated 6/9/19. Thank you.


zebrachampagne

Crack open the champagne, my #spoonie friends. The day many of us dream about for years has finally come upon me. I’m happy to announce after 17 years of desperately seeking answers to my myriad strange health problems, I finally have a definitive diagnosis that not only fits my entire health history, but that of my family for many generations. I indeed have Ehlers-Danlos Syndrome(EDS).

For those of you who read my blog and understand how well I’ve researched this illness and understand the problems I have, this probably comes as no surprise to you and you probably understand how elated I am. To those who have EDS and been through the experience of finding out what EDS is long before finding someone who was qualified to diagnose it, you probably understand perfectly well the bullets I sweated prior to my appointment. To be denied a diagnosis as your body literally falls apart and you collect one comorbidity after another like it’s some kind of “gotta catch ‘em all” game, is to be denied proper care, validation of your condition and your feelings, and one of the loneliest feelings in the world.

Until you’ve been through it, it’s hard to understand how being diagnosed with an incurable genetic disease is cause for celebration. What I’m celebrating is not the disease. It’s the validation. It’s the access to care. It’s having a name for what I have that I can use with absolute confidence. It’s about no longer having any doubts or getting pushed around by anymore doctors who tell me I just need to “lose some weight” (more on that later). It’s about having a community of other people who have the same diagnosis. Most importantly, it’s about knowing the right measures to take to care for myself properly, preserve what mobility I still have for old age and try to make the best of the life I’ve been given. I am Zebra Strong.

lonelyzebra

How to Find a Specialist

If you are still seeking diagnosis, don’t give up! Keep searching for a qualified specialist. It may be easier than you think and YOU ARE WORTH IT. Don’t let all the doctors who have put you off due to their own lack of initiative derail your mission. Ask your GP. Consult the Physician’s directory at the Ehlers-Danlos Society to see if they have a listing of any doctors in your area. If not, search for a list of rheumatologists and geneticists and start making calls. Ask if a doctor in the group knows how to diagnose EDS, whether they take adults and if you need your GP to refer you. Call your local hospitals. Call the hospitals and doctors in the closest major metropolitan area. If there is a teaching hospital nearby, you’re bound to get lucky checking with their doctors first.

Another option is to join Facebook support groups for EDS (such as EDS Today, EDS-Zebras Need Zebras) and ask for doctor recommendations in your area or if anyone knows of a support group in your area. Often you will find local support groups on Facebook, but they can be difficult to locate through search. If you fail to locate one, ask in one of the larger groups. That’s how I discovered my local zebra group and they happen to maintain a great doctor’s list! My local group was very hard to find. The doctor I saw was 15 minutes away, but it took me a year to find her. I wasn’t looking hard enough.

For my diagnosis, I saw a rheumatologist qualified to diagnose EDS. Unfortunately, there are still a lot of rheumatologists who aren’t trained, but luckily she and everyone in her practice is. I still need to go through the genetic testing, but unfortunately geneticists are in short supply in this country and those who work with adults are even rarer than the diseases they work on. The doctor who diagnosed me and I disagree a bit on the state of my loose skin and she has diagnosed me with Hypermobile EDS (hEDS), so I want to complete the genetic testing to be sure. Personally, I feel it’s best for everyone with EDS to be armed with all the information they need and that means getting the testing done to know your type and genetic mutations and what they mean.

Preparing for an Appointment

Once you have an appointment, it’s very important to be prepared. Arrive with a full personal health history and as much of a complete family history as possible, making sure that you cover as much of the EDS criteria as possible. I printed everything up using bulleted lists and gave it to the doctor’s assistant so she could review it along with my paperwork. Be sure to include everything from comorbid conditions, to stretchy skin and early hypermobility to poor proprioception to frequent colds or infections. Anything and everything matters, no matter how small you might think it is. Start on it weeks ahead of time and go back to it every time you think of something new to add. Mine was three pages long and I didn’t even include any information that was outside of EDS diagnosis since she was part of my regular healthcare system had access to the typical information provided to doctors in network.

If they send you paperwork ahead of time, be sure to fill it out. If not, be sure to take a list of all your CURRENT AND FORMER medications, have the names of all the doctors you’ve seen previously (huge, I know) and be prepared to answer questions about your worst pain, daily pain, when it occurs and how often, along with your current strategies of care. Also be prepared with a list of things you want help with, questions and next steps.

Finally, do your best to leave your past grudges behind. Usually by the time we get to the right specialist for diagnosis, we have been beaten, battered and abused by the system, but remember this is a brand new doctor who has never met you and never done you any wrong. Having suffered enough abuse of my own to have some white coat syndrome. If this is the case, try some of these tactics:

In the weeks leading up to your appt:

  • Ask a friend or relative to join you for moral support and to act as your liaison, preferably someone who is calm and well organized. Discuss with them your concerns and list of questions so they can help you stay on track and make sure everything important gets covered
  • Begin gathering any paperwork, tests, imaging and gathering information you will need for your visit

The day before:

  • Review your list of questions and goals for the appointment and review your paperwork.
  • Put all your paperwork, medications and/or anything else you need to take with you in one easy location by the door to prevent any last minute hunting.
  • Bathe and choose your outfit. Make sure everything you want to wear is clean and ready to go.
  • Take time to meditate, exercise or do deep breathing exercises, whatever you do to try to keep your anxiety under control.
  • Get a good night’s sleep, ensuring you treat your pain properly and take whatever sleep-aid you need to ensure a good night’s rest.
  • Even if your appointment is in the afternoon, set your alarm. Don’t leave appointment day open to surprises.

The day of:

  • Give yourself extra time to get ready. Look presentable and let the doctor know you care about this appointment. It’s okay if you’re too sick to do much, but make what effort you can for your level of ability. Wear clean clothes.
  • Arrive early, even if you don’t have any paperwork to fill out. If traffic is bad, the prospect of arriving late an missing your appointment will only increase your anxiety. If it’s good, this will give you a little time to hang out in the parking lot and meditate or do some breathing exercises, it’s all a win. Don’t like those ideas? Sit in the waiting room and read a magazine or look at your favorite cat videos on your smart phone, but don’t get involved in FB drama or interact with anything that could be detrimental to your mood. This is your time to RELAX.
  • Even if you’re nervous and shaking, remember to smile at EVERYONE. We react to what we see and if you smile at someone, they’re going to smile back at you. A smiling face can be really reassuring!

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Preparing for a Diagnostic Doctor's Appt