Top Tips for Chronic Illness Patients

These are my best ideas for dealing with chronic illness.  Got some I haven’t thought of?  Share your ideas in the comments, I’d love to know your thoughts…

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Learn: find out for yourself, anything you can on your condition so you can make good decisions about your care.

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Manage the symptoms:  follow the recommended treatments given by doctors, including taking all medications at the correct times. Use an alarm system or app to help you remember.
Plan for proper nutrition, engage in a recommended exercise program if you can.

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Observe:  Know what triggers your symptoms, if anything. Learn to pace. You know your limits better than anyone else.  Sometimes, challenge your limits a little. It’s okay to try things to better assess your capabilities as they change.

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Rearrange:  Identify the things in your home that can be re-organised to make daily tasks easier. eg. We have just installed a high bench in the laundry so I don’t have to bend down to do the washing. Changing things can help you maintain more independence.

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Enquire:  Ask away! Ask your doctor, social worker and anyone else involved with your care about the services available to you.  Ask online support groups for advice. These people have often been navigating these waters longer than you.  They will have invaluable ideas to help.

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Talk:  You need to continue to talk to the people in your life who are involved in your care. Don’t give up on expressing your needs.  If they don’t know, how can they help?  Just make sure you also keep up the listening part of the communication equation.  The talking and listening is so important, especially in your primary relationship. Try not to shy away from the hard conversations, persist with them until you find resolution, because in the resolution you’ll find peace and connection again.

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Redefine: what your roles and responsibilities are.  Discuss these with your partner, family, friends.  You might need to sometimes be assertive to help people understand the things you can and can’t do.

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Prioritise:  Decide what really matters to you in any given moment and congratulate yourself for prioritising that.  See if you are spending too much energy on tasks or people who are detrimental to your wellbeing.  It might be time to take some things out of the picture.

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Plan:  set realistic goals for your day and try to adopt a kind of structure. Eating at regular intervals can be hard to manage, but it is really important if you are taking medications.  Plan your food in advance whenever you can so that it will be easy to get to and eat. You might need to ask for help to get your food organised for the day. Avoid spontaneous activities if you don’t have the supports or circumstances in place to make it work for you.

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Reinforce:  how valid and useful you are by finding ways to empower yourself.  Being creative is a wonderful way to remember how unique and special you are. It’s also a great distraction.  Find ways to express your own skills and talents and explore all the ways you are able. This detracts from the focus of all the ways you feel dis-abled.  Think of things you can do and get into doing them.  For me, it’s writing… blogging has been a wonderfully empowering tool.  And I can do it in bed!

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Reframe:   Taking a different perspective from the negative is a powerful tool of choice. Being positive can be as simple as seeing the humorous side of a situation or reaching out to someone else who is suffering with some encouragement or acknowledgement. It can make an enormous difference to your emotional well-being.

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Distract:  If you like to be in control, this one is for you.  Man-handle your mind’s focus on your illness by wrestling it into another thought pattern.  Use some strategies recommended by psychologists. Listen to music, do some art, write; get your brain and fingers busy.

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Relax:  Stress worsens the experience of symptoms and leads to increased tension.  Deep breathing techniques, massage, meditation, yoga, tai chi are some things you could try (depending on your physical ability) to improve your relaxation.

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Laugh:  it’s the best medicine. If nothing in your daily experience is tickling your funny bone, seek out laughter.  Search online for funny videos, comedy channels or TV series.

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Get support:  It’s totally normally to be emotional about being chronically ill.  Of course you are!  There is grief for yourself, but also you may find self-blame, anger, frustration, hopelessness, despair.   Seek help among those dealing with your illness.  If you can, find a support group, online or in person. But also, use the mental health help-lines or seek professional psychological help. Friends, family, fellow-sufferers and health professionals can all help you find ways to let go of the sadnesses and find a pathway through.

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Let it Go:  take steps to accept that the old definition of yourself and your old life, prior to becoming ill is no longer relevant to this time you are walking through. Let yourself redefine and create a new meaning and purpose beyond your illness.  I have found that asking by myself  “What sort of person am I?”  rather than “What do I do?” I have a good starting point for this process.  Letting go is not something you’ll do once.  You’ll let go in stages, or you’ll let go over and over.  Just keep your focus on who you are. And be kind to yourself. This letting go is tricky.
*Are you in New Zealand?  If you are and you are registered with a ProCare GP, you may be eligible for funded sessions with a psychologist (no cost to you).  You can find out more about this service by contacting ProCare Pscyhological Services or your GP.   www.psychologynz.co.nz
Some health insurance policies cover psychiatric services or there is always the option to pay for the services of a qualified psychologist.  Call your insurance provider if you have questions about it.

Chronic Illness.  Top tips for dealing with chronic illness.

What would you do?

I’ve been doing that thing patients do.

Waiting.

I’ve been doing it impatiently, because I’m like that. I goes like this. I’ll be going through my day and the thought occurs, as it regularly does:

How can I keep going like this?

Which always leads to the next thought…

Am I doing enough about it?

What would you do_(1)Well, I’ve been fighting for years to find someone who will investigate the cause of my Dysautonomia and consider treatment.  Last year, I found two great immunologists. Which brings me to the waiting part.  It’s like a circle of impotent wishing.  Drives me a bit bonkers, but that is the price you pay for not paying a price when it comes to medical care. We have this free medical system here and I am so grateful for it (because by the time I got around to organising Private Health Insurance, I was already deemed ‘uninsurable’).  If I’d been living somewhere else (like the US), my situation would be dire.

So I’ve been waiting (albeit impatiently!) for the immunologists to get back to me about the possibility of IVIG.  At the end of last year I had the tests they were hoping would offer a compelling base line. But the tests didn’t provide the strong results we hoped for.  It is one of the most incredibly frustrating features of Dysautonomia, that our tests don’t always catch our bodies behaving the way they do.

My tilt table test was ‘unremarkable’. Instead of my trademark drop in blood pressure and a heart rate that drops through the floor, my blood pressure was high.  The entire duration of the test was a painful torture for me, due to the pain in my pelvis and hip when I am weight bearing. I suspect the pain brought my blood pressure up, buoying my system into a false negative TTT.  But you don’t get a ‘do-over’, and even if I could, the pain issues I am having are still being explored, we know it isn’t structural; it is possibly neuropathic.  Another needle in the haystack.  Either way, it’s not going away overnight. By contrast, the gastric emptying study showed “an abnormal pattern of gastric emptying and small bowel transit compatible with (her) known Dysautonomia”.

And I am only guessing… but I think it is clear that more significant results would have made for a different outcome.  Fortunately, and sometimes unfortunately, the medical system functions on objective data. That’s just the nature of the science.

I had a phone call last night from one of the Immunology outpatient doctors at Auckland Hospital. He was a lovely person who was very thorough with all the details.  He outlined the plan for me. I will start a six month course of methylprednisolone pulse infusions in February.  If I respond well to the steroids, this will give us a better indication of whether or not I have an autoimmune aetiology.  That just means that we will try a ‘suck it and see’ approach.  If this treatment works for me, it points towards my problems having an autoimmune cause.  It has been tricky to establish this point because the tests I have had done have not shown auto-antibodies for the usual culprits.  The main one, the Acetylcholine Receptor antibody, is negative.  According to Dr Vernino, 50% of his patients with presentations similar to mine, are sero-negative.  That’s like one in two. The flip of a coin. That’s why I haven’t been able to just sit with a doctor response of ‘it’s not auto-immune’.  I guess I need proof that it is not, just as much as proof that it is, before I can put that theory to bed.

I am also desperately attached to the idea that my problems might be immune mediated.  I prefer this possibility to many, despite the fact that treatment is not without risks.  I prefer it because it actually has a treatment pathway.  That’s a hope-inducing fact. Apart from my pacemaker, I’ve been languishing in the progressive no-mans-land of Dysautonomia, without treatment, for five years.  My symptoms are ‘managed’ (ha!) with a range of medications.  But none of that is addressing the elusive cause.

If something was wrong with you, if it changed your life and had an impact on your family… would you be able to sit back and accept the line; ‘We don’t know the cause/it is too hard to find the cause/ just accept that you have this thing we don’t understand’?  Well, I can’t. I’d rather go through the frustrations and exhaustion of searching for answers than just accept the ‘We don’t know’ line.

And maybe that is a defect in my personality. Or maybe it is a strength.  Either way, it doesn’t feel like a choice to me. I welcome the opportunity to try methylprednisolone.  It is the first proactive thing that has happened for my condition in five years. And if it doesn’t work?  I really don’t know what is next. If anything.

Maybe that is when I have to look at accepting some things. And that makes me want to drop to the floor in a full tanty. So I’m not going to think about that unless I have to.  Is it wrong to search and search for a cause in the hope of arresting the nerve damage?  I’ve already seen the ways this has affected my body.  I don’t need an imagination, or the facts, to see where it is headed.  If I can find something that will halt the slide, I feel like I should throw everything into that search.  Isn’t it what most women would do?  It’s not just about fixing this for me, it is about finding the best way through the maze for me and for all the people in my world.  It’s not self-indulgent to think they need me.  They do.

What would you do?

Getting Grown-Up

Happy New Year

Every New Years my hubster and I sit out on our balcony after the kids have gone to sleep.  We eat fancy cheeses, oat crackers, pepitoes and plump olives… and my favourite; grilled artichoke hearts.  We toast another year. We talk about how it has been and stubbornly focus on the achievements, congratulating ourselves for what we have managed.  Then we plan the next year together. As the years pass and my body presents more challenges, we’ve been surprised by how much we can still do.  Together.  2014 has been a good year for us as a couple. It’s been good for us as a family.

It’s taken all year, but our minor renovation downstairs is complete. Happy sigh! A good year for finishing things, tying up loose ends.  Getting more organised.  We are starting to feel like grown ups. I turned forty this year; next year, he’ll turn fifty.  Takes a while, getting to this grown-up feeling!  Once upon a time, we used to go to New Year’s Eve parties.  That’s just not feasible anymore, and you know what?  We don’t even miss the sparkle and excitement, the social stress, the late night, the hangover.  Last year we rang in the New Year at 10pm and tucked ourselves up in bed.  It was perfect.

We have a decoration on our tree, it is a hanging, lidded gift box, crammed with tiny notes.  This year, when we were decorating the tree, my son asked me what all the folded pieces of paper inside were. He had never noticed them before.  They are all our plans for all the New Years. Written in tiny script, hopes and goals and aspirations, folded into the smallest possible wad and added to the years before.  I showed him and his interest skipped off elsewhere, the way it does when you are seven and Mum shows you something less magical than you expected. We, however, always look at previous years nostalgically when we add a new one! It’s amazing how many of them have come true.  Is that because we wrote them down? Planned for them?  Is it really that simple?

What are you planning for in 2015?

Next year holds so many unknowns for me.  I am supposed to start IVIG treatment.  That will run for six months. I’ve been accepted into a leadership programme, for people who show promise as a voice for social change.  For me, that means really working on using my voice to promote understanding of invisibile illness and invisible disability in New Zealand, building leadership skills, increasing my network.  It’s an incredibly cool opportunity, but I don’t know yet if the first will preclude me from the latter, I’m waiting for some dates to know for sure. I feel like I am suspending my excitement in case it doesn’t all fall into place.  But, OH!  What if it does?!

What is certain for me about next year is that I will be wife-ing, mothering, writing, and getting involved with life in as many ways as I can.

I’ll be spending a bit of time (as much as I can manage) out in the countryside, where my daughter rides; drinking in the goodness of green paddocks and the sweet smell of horse feed.  I’ll be stroking the warm neck of her wise and good pony and watching my girl follow her bliss, hair flying out behind, grin on her face.  It’s the best soul food on the planet, watching your children do the things they love.

I’ll be wrapping my arms around my little guy as often as I can. I feel that he is moving on up into a new stage and the little boy sweetness of his cuddles is making way for boundless, urgent energy. He’s a big kid now, a purple belt in karate, a story-writing, poison-ball-tramp-champ-justice-leaguer. He’s growing up and I am treasuring the last vestiges of my baby boy.

I’ll be working on some more pro-active health measures.  I want to improve my gut motility somehow, so I am going to work on what I feed it, I’ll be giving my intestines a rest in the very early New Year by starting a liquid diet.  I had a gastrograffin study which showed, when compared with my recent gastric emptying study, that liquid transits through my intestines with much more ease than solid food. So goodbye cake! I’ll be souping it up instead (know any great soup recipes?). I also want to do all that I can for my general mobility and my fitness, so I am going to the rehab centre to work on my exercise program. I’m excited and hopeful about what that might do.

I’ll be here, blogging about my life with dysautonomia, and all the other things besides.  I’ll be connecting with you over on my Chronic-ills of Rach facebook page. I’ll be emailing, advocating, writing and doing the work I have been given to do.  There is so much more of it.   Hang around with me, I’ve just got this feeling that 2015 is going to be a good one!

How do you celebrate New Years?  Can you?  Do you have little rituals too?

Move over Marvel

Yesterday was my first day back home after my trip.  I’d been feeling less than super.  My bed and I reacquainted our special friendship and I spent most of the day hanging out there.  I got up around time for school pick up, and just then, the phone rang.  It was a private number, I sighed …I didn’t have time for another one of those telemarketers.  I picked up the phone anyway.
“Hello?”
“Hello, is that Rachel? It’s Richard Steele. Immunologist.” 
Imagine that, said in a Superman voice and you are right there in that moment.

I sat down.
We’ve been waiting to hear more from the two immunologists I went to see a few months ago. I have an appointment coming up soon at the hospital to discuss The Plan. Last appointment, we talked about high dose steroids and IVIG.  IVIG has yet to be approved. He continued, “-has anything happened?” well now, there is a leading question!  My brain travelled instantly down the path usually accompanied by that question.  Why was he asking about my toilet habits? Was I supposed to do something in particular?
“…have you had any bloods or other testing done?”
Ah. Not about poo then.  The whole world is not about poos after all.
“No, not yet”
He apologised for the delay (have you ever had a doctor apologise for delay?!) and said he would send me through some new blood forms forthwith, get me referred for another Tilt Table Test and a Gastric Emptying Study.

I think they’re a bit like superheroes, these Immunologists I am seeing. 
Not in a crazy way, more in a “Woah… those guys are clever” kind of way.  It’s great to have lovely thoughts about doctors.  So often the experiences of Dysautonomia patients with doctors leads to other, less happy thoughts.  So I’m rolling with the loveliness.  If, in the end, they can’t help me, I will always be grateful that they have tried.  It’s all I need; people to try to help.

So those are the things I am looking forward to in the next wee while.  The tests are to establish baselines for comparison.  My last Tilt Table Test was in 2009.  It was a scary event, because it was when we learned that after 9 minutes of standing without the ability to posturally compensate, my heart stopped.  This time, I’ll have my pacemaker on board, but it is hard not to be nervous after the last time!   I’ve never had a gastric emptying study done, but I am interested to see what the findings are there.  Post-prandial bloating is a daily occurrence for me, so some data would be interesting.  The blood forms, I am also intrigued by.  I wonder what tests they have ordered?  Will they be different, or the same as I have had before?
Fascinating.  Scary.  Exciting.

Stay tuned for the next adventures of The Man of Steele (see what I did there?) and his accomplice Rohan The Illuminator.  Here’s a little sketch I did of them.  🙂

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Speed Dating Doctors

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First up, I am NOT suggesting, like the cartoon, that you take your top off!  😉

Over the years that I have been sick, I have been to hundreds of medical consultations. I have spent thousands of days thinking about the way to approach my illness and the doctors who are there to help me with it. In its own way, an initial consult is not that different to a speed date. You sit across from someone you have never met before.  You want them to ‘know’ you as quickly as you can, without frightening them off with your enthusiasm or putting them off with the lipstick on your teeth.  You are conscious of the way you are dressed, the words you use, whether the package of ‘you’ is providing them with enough motivation to want to see you again.  Or in this case, to want to help you.  It feels like desperation.

I’ve had months at a time of simmering anger about the nature of medical consultations. The complicated social and human dimensions of these interactions. The unfair onus, placed on the already sick patient, to make the relationship work. The challenging time frames, the workloads and stress the doctors are under. The nature of the beast.  It feels hopeless.

And I’ve had happier times, reflecting on meetings that have gone well, optimistic conversations, good patient-doctor dynamics.  Feeling cared about, knowing they are using those good brains of theirs on my behalf.  Knowing that I matter to them. That in spite of the symptoms that are dogging me, they have seen who I actually am underneath it all, and spoken directly to the ‘inside Rach’. The real me.  Not to my illness, nor to my husband, but to me.

It has emerged over the last six years of my illness, that there is a way to behave when you go to see a specialist.  You should be able to just rock up, in whatever state you are in that day, and be helped.  But that is a pollyanna wish for a pollyanna world. So given that we don’t live in Utopia and the challenges facing doctors and patients are not about to go away, I have compiled eight points for approaching doctor visits.  I’d love to know if you agree or disagree and especially, if you have something to add!  You can use the comments function below to add your two cents worth.

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If you can afford it, or have insurance, always seek private help when you can.  Private specialists have more time to spend with you and access to an even wider range of services through their networks, often for more timely and responsive testing and further investigations.
Public hospital clinics are time-poor, the specialist doctors have huge workloads.  That being said, if you don’t have private health insurance (like me), it is possible to find great doctors (sometimes even the same doctors you would find in the private health sector) and wonderful assistance through the public system.  You just have to be prepared to be a patient, patient.  Things don’t happen in a hurry.

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Carve out a week before your consultation for rest.  Sleep as much as you can, eat as well as you can.  Resting gives you the best possible chance for mental clarity at your appointment. I think this is one of the most crucial aspects of your visit.  Gather together your papers, or anything new that might be of interest. If you are taking along some research journal articles you have recently found, make sure it is a copy you can leave with the doctor if they want to look at it later.  If you have to travel some distance to get there and you can stay overnight near to your appointment the night before, organise that.  Allow lots of time to rest between travel and appointment.  Unless you are going for tests.  If you are going for tests, just carry on as normal in your daily life so the tests reflect your ‘normal’.  Your doctor might want to know what you goal is for the consultation.  Make sure you have thought about that.  What are you hoping to achieve? Make a note, on your phone or somewhere you can access it easily.  Forgetting might be part of the way you roll, it is for me.  Write out any questions you have and make sure you ask them.
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When I go into a specialist or doctor consultation room, I always say hello and ask them how they are. I tend to slide over their initial ‘How are you?’ with ‘I’m happy to be here -or- pleased to see you -or- getting through, thanks’.  I think it is appropriate to give them the lead for the conversation and listen quietly while they explain their intention for the meeting and what they are going to do next. They will usually ask questions.  I try to answer them all but sometimes I get a bit foggy. I think it is okay to apologise for that and explain that sometimes I find it hard to find the words I need.  Do Use your P’s and Q’s.

Politeness also extends to the way you object, if you need to. There are times when you need to make a point.  You never need to raise your voice, in fact, making your voice slightly quieter and taking it slower can have just as much impact.  Don’t settle on a misunderstanding, make yourself clear and  repeat their response back to them if you need to. i.e. “So you are saying that I need to have x, y or z done?  Should I organise that? How does it work?”

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There are two aspects to this one. The first is that I like to form a partnership with my specialist ‘What would you like me to do -or- how can I help achieve this outcome -or- can you recommend any further course of action?’ is a great way to open a partnership if they seem amenable.  It’s not worth trying if they are not engaged with your situation.

The second is, that hands down, when my own partner is with me in consultations, the appointments always go better.  He helps me with the words I can’t find, he knows my medical history and he can offer the specialist another opinion on how things are going.  I also have found that when I have attended appointments on my own, I have been more likely to feel bullied, passed over, misunderstood and as though I am simply, a nuisance. Somehow, having my partner there lends credibility to all the things I say myself.  And I can clarify things with him afterwards “…what did they say about that, again?”  If you don’t have a family member who can go with you, seek out the patient advocacy service at your local hospital or clinic, or ask a trusted friend.

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Maybe it is a throw back from my childhood, but I am a big believer in the importance of presenting well. I think it shows doctors that I value myself. And if I do, they will. I don’t bother with makeup, but I make sure my clothes are fresh, neat and presentable. If I am likely to have electrodes stuck to my ankles, I try to shave my legs before hand.  I make sure I smell nice.  If I can, try to have washed hair, or run a brush through it before the appointment.  If I am going to have a neuro exam, I suck on a mint beforehand.  The close personal space is stressful for me if I am thinking about my breath. If only the courtesy was mutual.  😉   A word of caution about cheeriness though.  If you are smiley and chipper, they may find it more difficult to look beyond the cover to what the book within contains.  Let’s not confuse them with social cues that would be more appropriate at an actual ‘date’!

The other meaning of the word present is in the context of being ‘present’. Really notice your specialist.  Consider their body language, give them eye contact.  Use your voice and don’t waste their time on issues that aren’t part of their specialty.  For instance, if I am seeing a cardiologist, he is unlikely to be able to help me directly with my urinary retention.  So rather than “I’m having trouble with my bladder” I might say “Can you suggest someone who might be able to help me with the troubles I am having with my bladder?”.  This acknowledges that you are heading off their brief but asks them to help in a reasonable manner.

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You might not be bothered about keeping your medical records, but I am. I like to ask my specialists if I could please have a copy of any correspondence forwarded to me for my file. In New Zealand this is not frowned upon and is easy for them to organise.  It is worth asking for, as some won’t do it automatically.  It also means I have copies of letters to show other specialists, right in my file.  Hospital computer systems are notoriously maze-like and having an organised file of your own can save your doctor lots of time.

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Not all doctors need you to play the game.  The good ones don’t, they are not swayed by matters of ego or intellectual superiority.  But some are. Make an assessment based on their responses.  If they don’t like it when you use medical jargon, don’t. Use non medical words (even if they are clumsier and take longer).  Recently a doctor asked me about my gastrointestinal symptoms.  I said that I suffer from post-prandial distention and dysmotility.  He asked me to tell him what happens, not the diagnosis.  I guess he wanted to establish that I was in fact correct in my terminology. Instead of getting shitty about that, I just slowed down and explained that after I eat my tummy ‘blows up big and then there are no digesting noises, it’s painful and huge until it all gets moving again’.  Some doctors have reasons for the things they say that seem arrogant. That’s okay.  Play the game, when they know you better you won’t have to.

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When you have a bad doctor visit. Followed by another bad doctor visit, by another, it can seem like there is no point in carrying on with it.  It’s tempting to walk away altogether, to not seek help when you are suffering or when symptoms worsen or something changes. Please persevere. Every appointment adds data to your medical file and at some point, a picture may begin to emerge. Don’t give up.

Oops!  …and there goes the speed-dating buzzer.  Will you and your doc give each other a tick?
I wonder if they think about these things as much as we do..?