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No News Isn’t Always Good News

question mark inside a speech bubble expressing bad communication between doctor and patient when searching for a diagnosis © livingpositivelywithdisability.com

Struggling to find a diagnosis in a health system that doesn’t care as much as it should…

It’s been exactly six months and three days since I first visited my Rheumatologist with hands that were sore and unable to do many of the things I was used to doing everyday, like holding full washing baskets and chopping vegetables. He told me I had early stage osteoarthritis and sent me away for blood tests and x-rays. It was right before Christmas, which was probably not great timing (but that’s when these things happen, right?) and he said, “You won’t hear from me unless something crops up in the tests.”

It wasn’t until I was half way home (driving in shock: not recommended. I mean who gets arthritis in their mid forties???) that I realised I didn’t know what to do next. Surely some sort of rehabilitation plan was in order?

Well, I never heard from that doctor again. Things started going down hill very quickly during the next few weeks. Over New Years, I started having trouble walking. At the end of January I was admitted to hospital with suspected MS. Results negative. Discharged with crutches. Still no rehabilitation plan.

A few weeks later my left leg went numb. Neurology pin prick testing showed lowered sensation. I was put on a 6 week waiting list for a private neurologist.

I would fall over without any warning every month or so. I went to three physiotherapists during this time who all gave conflicting advice. I finally saw the neurologist, who said I presented normally. She referred me for further neurological testing (1hr 40 minutes of being electrocuted and stabbed with needles for nerve and muscle response testing). Result: mostly normal. I paid for a private MRI because the public system didn’t want to know and I didn’t want to fall over again. The results came back in a convoluted and barely understandable letter that used words like orthrosis and spinal degeneration. I read it with a medical dictionary at my elbow and made extensive notes in the column. OK, I have arthritis in my spine. I felt relief because I finally had an ANSWER.

My GP popped the bubble later that night when he rang me (nice of him) to say that the degeneration in my spine was normal for my age and didn’t mean anything. Probably just stress (aka probably just in your head).

Back to the land of limbo and self doubt I went.

I saw the Rheumatologist again, under my own steam, because surely those medical terms above meant something? He wasn’t able to “add more to the story”, he said, but he did give me stronger pain killers (Lord, bless him, ’cause pills fix everything).

I saw the Neurologist again (can you hear their cash registers churning over?) who said I had sustained acute damage to my lower back which was irritating my nerve. She put me on Amitryptiline and beta blockers to normalise my nerve responses. Funny, I don’t remember the event which caused this damage. But, OK, I have an answer again. And a cure, to boot. Yipee! However, her follow-up letter to my GP didn’t quite correspond with her words at the appointment and, reading it, it  once again made it sound like all my symptoms were the result of anxiety.

Never mind. Only forwards.

Today I got a routine follow up letter copied to me from my (now ex) Rheumatologist to my GP. Down the bottom of it, listed almost inconsequentially, is the fact that I tested positive for the genetic marker HLA-B27 for ankylosing spondylitis six months ago, the evidence of which also showed up in my spine MRI.

At this point the *slight* frustration I’m feeling is probably showing in the tone of my writing. I understand (see how I’m still trying to be reasonable here? Very generous of me, I think) that a full diagnosis takes time and probably nothing can be confirmed at this stage, but knowing my results is incredibly important for so many reasons, most of which I’m sure you are aware of.

I am a person who gives advice to others about how to handle the medical system. When I talk to those working in the system, they say, “Yes, it’s common for it to take months, even years, to get a correct diagnosis. Frustrating, isn’t it?”

But some really useful information about my situation came to light six months ago. Since then, I have wasted a whole lot of time and money (you have no idea and I am not going to do the math at this point) because I wasn’t told that information. Let alone the huge amount of stress of having an array of bizarre symptoms (sore heels is a symptom – who would have thought?) which at times leads you to think you’re going slightly mad.

What If I had never read that letter?

Not only should I have been told about the results, there should have been a conversation about what those results meant and what symptoms to look out for (for example, it never occurred to me to tell the doctor about my sore heels, as it seemed irrelevant, so there’s a piece of the puzzle that was left out due to bad communication).

I honestly don’t know what advice to offer people when this sort of thing is not only is known to happen, but is expected.

The only thing I can say is: be aware that it happens. Negligent or lack lustre doctors, administration muck ups, the mail system – blame it on of a hand full of suspects. It happens.

Be diligent.

Keep asking questions and seeking answers when you know something doesn’t feel right.

No news is not always good news.

 

More articles you may be interested in:

Managing Extreme Stress: what a decade of therapy has taught me

Anxiety Management: 21 tried and tested tips from sufferers

Best Techniques for Improving sleep: advice from the experienced

Living Positively Starts HERE (even on bad days)

@ livingpositivelywithdisability.com

The post No News Isn’t Always Good News appeared first on talkhealth Blog.

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What a Good Relationship With Your Doctor Looks Like

Cup of tea, glasses and an x-ray form, to illustrate getting good medical help © livingpositivelywithdisability.com

Have you ever walked out of an appointment with your GP and wondered what you paid all that money for? Have you ever felt like they didn’t really listen, palmed you off, even scoffed at your symptoms?

Getting good medical help is so important, not just to make it a more pleasant experience for you, but to ensure that you are getting the right preventative checks, early intervention and an informed, thorough management of illnesses.

What I have covered below is by no means an exhaustive list and I am sure there are plenty of people who know a lot more about it than me, but here is what I have learnt so far in my life (and medical) journeys:

I’ve said before that there are doctors and then there are doctors. Due to knowledge base, preference and/or personality, every doctor is different and not all of them can give you the help you need…

The Right Doctor

I remember the first time I met my current GP.

My husband had bundled me into the doctors office. I was in tears. I was distraught. I had been trying to be strong for so long, bottling things up inside, that I had become a tight wire of anxiety and I was about to snap (or maybe I already had).

My GP took the time to really listen to me and go over all the aspects of my situation and all the ways I could seek help. He set up a management plan and he referred me to the people who would make that management plan happen. He took extra time to make sure everything was in place for me before he let me leave his office.

He rang me to make sure I was OK in the following days and he booked me for another appointment two weeks after the first.

Unfortunately, it takes a very special doctor to handle the above situation in the right way. I say “unfortunately” only by virtue of it being so rare. Unfortunately, low level negligence is normal, but it is not right.

Scott has been my GP for about 7 yrs now. I had a few before him but he is the right mix of dedication, genuine care for patients, holistic overview and ongoing learning that I need from my GP. If you, like me, are a (let’s be honest) high maintenance patient, it is doubly important that you too have a doctor who is open minded, continually learning from the current medical literature, genuinely cares about their patients and is willing to go the extra distance, every time.

Everybody needs something different. Some of my previous GPs were nice people, fine doctors, but just not the right fit for me. You need to find the right fit for you and to not be afraid to keep looking if the fit isn’t right. Your health is far too important to put it in the hands of someone who perhaps doesn’t care for you in the way that you need, or even someone who doesn’t have the same outlook as you. GP-patient relationships are intimate, sensitive things and good communication and trust is so important.

A good doctor is a consistent doctor. The worst thing you can do is just see anyone who’s available (unless you can’t help it, which happens). You need (using that word very purposefully) a doctor who knows you, your medical background, your family and personal situation. All these factor are incredibly important when making decisions about the medical management of a patient. And with that knowledge base, trust grows. You learn to trust your doctor and put faith in their decisions and they learn to trust you and do things for you that they wouldn’t necessarily do for a stranger walking in their door (like not charge you because they know you came in last week with the same complaint, charge the whole family as one person or order additional tests a new doctor wouldn’t consider because they don’t know the whole picture). Building that relationship over time with a good GP is important and beneficial in so many ways.

A good doctor should…

  1. in all dealings with you, show you respect as a fellow human being – you may not have their degrees, but that does not make you lesser.
  2. not be rude, or even impersonal.
  3. not talk at you, but with you.
  4. make you feel at ease.
  5. listen to you and express empathy.
  6. not hurry you through the appointment because they’re running behind schedule (that’s their issue, not yours).
  7. not discount what you say out of hand but instead discuss all aspects of what you are experiencing, what their take on it is, and why.
  8. explain things thoroughly but clearly (after all, you probably don’t have a medical degree and, if you’re anything like me, you may have barely passed science in high school, too).
  9. order appropriate follow up tests and investigations.
  10. contact you about important test results, even if by text and even if the results are clear. In this way, a good doctor acknowledges the stress and worry of waiting for test results and seeks to reassure their patients.
  11. ring you in the days after the appointment to check in if you have presented with mental health issues for the first time, or presented with borderline hospitalisation symptoms. A good doctor’s care of their patients goes beyond their door. A good doctor doesn’t just want your money; they have your back.

The best advice I could give you for finding long term high quality medical care is to create a social web of good information and good services. If you’re happy with one service provider, ask them to recommend others. If your doctor leaves the practice, ask the receptionist (who you’ve developed a really good relationship with, of course!) to recommend another. (Gently) grill everyone you meet, from social workers to pharmacists. Make the most of your existing relationships and contacts to make the next connection you need.

A lot of the time you have to be super assertive and ask the right questions, as I have learnt from dealing with medical professionals for my disabled child over the last 14 yrs, but there are definitely people out there who are more than worth their weight in gold when it comes to giving you help. 

When it’s time to move on

Not happy with your doctor but not sure whether you should look for someone else?

I encourage people to take part in their diagnosis, listen to their inner compass when it tells them something doesn’t sound right and seek second, third (or even more) opinions when those doubts arise.

Discuss your situation with friends and family if you feel like you need a sounding board for your concerns. Maybe go online and chat with support groups (using your judgement to make certain they are informed and actually supportive) to get the ‘inside story’ and possibly even recommendations for other specialists (or at least how to access that information).

Making decisions: parenting exercises

Something that I’ve found that works for me when making tough decisions that you could try if you like the sound of it, is what I call a parenting exercise: I pretend that I (Lowen) am the parent of me (Lowen) – what would I tell myself? “Stop being silly”? (no, that would be that pesky, negative inner voice in your head, not your parenting self). You may find your parenting self might say, “Hmmm, maybe you should get a recommendation and go and see someone else for a second look,” or, “Try this medication for a few weeks and see if it helps, like the Specialist said it would”, or “I think you’re over thinking it, love,” or, “Maybe sleep on it and see if you still have reservations in the morning”. Our parenting selves tend to be more logical and also more loving than the rest of the jumble of thoughts in our head. It can be an effective way of stepping back and looking at the situation in a clearer light.

Being part of the process

These are all ways of making a measured decision about how you want to progress in managing your illness. And that bit I just highlighted is so important – we shouldn’t just be treated by a doctor – we should always be part of the decision-making process.

If you are coming away from your appointment feeling like you weren’t part of the process, it probably is time to move on.

You don’t have to put up with substandard services just because they are all that’s been offered to you.

Get a second opinion. Ask friends and trusted professionals for recommendations.

Keep looking until it feels right.

 

Best of luck, hope you hit gold with your doctor and they are caring and informative.

 

For related articles, click on the titles below:

How to Survive a Day Stay in Hospital

How to Be a Good Support Person at a Medical Appointment

And click here to get a ray of sunshine in your inbox, by signing up for the monthly newsletter with new, free tips for living positively made just for subscribers.

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P.S Did you know that you have legal rights regarding the medical help you recieve? Come this way for more information.

The post What a Good Relationship With Your Doctor Looks Like appeared first on talkhealth Blog.

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Skin’s ‘Good’ Bacteria May Help Fight Eczema – WebMD


WebMD
Skin's 'Good' Bacteria May Help Fight Eczema
WebMD
THURSDAY, May 3, 2018 (HealthDay News) — A treatment that harnesses the power of helpful bacteria living naturally on the skin might be a breakthrough treatment for eczema, early research suggests. The therapy capitalizes on recent insights into the
Applying live bacteria to skin improves eczemaWTOP
Treatment Using Bacteria Might Bring Relief To Eczema SuffersCBS New York
Probiotic bacteria spray eases severe eczema safely in small studyToday.com
National Institutes of Health (press release) –Science Daily –WKTV
all 17 news articles »

eczema – Google News

Skin’s ‘Good’ Bacteria May Help Fight Eczema – WebMD


WebMD
Skin's 'Good' Bacteria May Help Fight Eczema
WebMD
THURSDAY, May 3, 2018 (HealthDay News) — A treatment that harnesses the power of helpful bacteria living naturally on the skin might be a breakthrough treatment for eczema, early research suggests. The therapy capitalizes on recent insights into the

and more »

eczema – Google News

Skin’s ‘Good’ Bacteria May Help Fight Eczema – WebMD


WebMD
Skin's 'Good' Bacteria May Help Fight Eczema
WebMD
THURSDAY, May 3, 2018 (HealthDay News) — A treatment that harnesses the power of helpful bacteria living naturally on the skin might be a breakthrough treatment for eczema, early research suggests. The therapy capitalizes on recent insights into the

and more »

eczema – Google News

Skin’s ‘Good’ Bacteria May Help Fight Eczema – WebMD


WebMD
Skin's 'Good' Bacteria May Help Fight Eczema
WebMD
THURSDAY, May 3, 2018 (HealthDay News) — A treatment that harnesses the power of helpful bacteria living naturally on the skin might be a breakthrough treatment for eczema, early research suggests. The therapy capitalizes on recent insights into the
Treatment Using Bacteria Might Bring Relief To Eczema SuffersCBS New York
Applying live bacteria to skin improves eczemaWTOP
Probiotic bacteria spray eases severe eczema safely in small studyToday.com
National Institutes of Health (press release) –Science Daily
all 13 news articles »

eczema – Google News

A Vision of Good Eye Health

Regular eye checks and a healthy lifestyle go hand in hand with healthy eyes, yet too often we overlook the health of our eyes until we start to experience vision problems. So what should we be doing to protect our eyes?

Optometrist Karen Sparrow at AXA PPP Healthcare has some tips:

Every year 12.5 million people who need a regular eye test fail to have one, says the RNIB, a national charity that supports blind and partially sighted people.
Yet eye health experts stress that regular eye tests are a vital means of detecting early signs of some of the main causes of severe sight loss, including wet AMD, cataracts, glaucoma, diabetic eye disease and myopic degeneration.

In many cases, these conditions are treatable if detected early.

Optometrist Karen Sparrow says people should see an optometrist every two years, even if they don’t need glasses, “and more often if you wear glasses or you start having problems with your eyes”.

She points out that an eye examination doesn’t just check how well you can see, but also assesses the health of your eyes and whether there are any underlying health conditions, such as high blood pressure or diabetes.
It’s especially important for people aged 60 and over to attend for regular eye checks, yet many fail to do so, notes the RNIB.

A survey commissioned by the charity in 2007 found that the main reason given by older people for not having an eye check in the past two years was that they were not having any problems with their eyes.
“This shows that older people lack awareness of their own potential health risk and make the incorrect assumption that it is safe to wait for sight loss symptoms before having an eye health check,” it warns.

Children’s eye health

Karen stresses that children need their eyes testing, too. “It’s important to take your child to see an optometrist for a full eye examination before they start pre-school at three to four years old, and certainly before they enter Year 1, particularly if other family members wear glasses or have eye problems.”
She points out that, as well as blurry vision and eye strain, some common childhood eye problems, such as amblyopia (lazy eye) and strabismus (squint), are treatable if discovered at an early age.

While older children have their eyes tested like adults, using all the same tests, the optometrist will adapt tests for younger children, she explains.
“For younger children, particularly those who do not know their letters yet, the optometrist will simplify tests, often using shape-matching skills or tests that do not need a response from the child.”
She adds that eye tests are free through the NHS for children up to the age of 16.

How lifestyle affects eye health

Karen Sparrow also stresses the importance of a healthy diet to good eye health. She adds that certain fruits and vegetables containing lutein and zeaxanthin may help protect against some eye diseases, such as macula degeneration and cataracts, later in life.
Among foods that contain nutrients good for eyes, she says, are blueberries, spinach, broccoli, sweetcorn, orange and yellow peppers, kiwi fruit, grapes, oranges and mangoes.

Nutritionist at AXA PPP healthcare, Sarah Schenker adds that there is also strong evidence from various research studies linking the antioxidant vitamins A, C and E with good eye health.
“These vitamins help to maintain healthy cells and tissues in the eye,” she explains. “They can be found in many different sources of fruit and vegetables, as well as nuts, seeds, dairy products and eggs.”

Karen’s tips for everyday eye care

In addition to having regular eye checks and maintaining a healthy lifestyle, Karen outlines some other precautions we can take in our everyday lives to help keep our eyes in tip-top condition.

 VDU protection
Nowadays, we spend a lot of time on computers for leisure as well as for work, so it’s important to make sure you and your eyes are as comfortable as possible when using a VDU screen. Make sure you can see over the top of your screen when sitting comfortably at your desk, and take regular breaks – about five minutes every hour if you are using a computer for longer than 60 minutes at a time. We also tend to stare at the screen, which makes the eyes feel dry and gritty, so remember to blink (closing your eyes fully several times during an hour’s work) and to look out of the window or across the room every 20 minutes to rest the eyes. Your employer is responsible for your comfort if you are working with VDUs regularly and will have a policy for eye testing its employees.

Keep it clean
Many people wear contact lenses to correct their vision, and nowadays most are fitted with disposable lenses that can be thrown away every month or – the height of convenience – every day. It is really important to follow the guidelines and instructions your optometrist or optician gives you, as most problems associated with contact lenses derive from poor cleaning or wearing the lenses too long. If you wear eye make-up with your contact lenses, always put your lenses into a clean eye and then put your make-up on. Hypoallergenic formulas are less likely to irritate your eyes and it’s best to avoid waterproof mascaras as, if particles get into your eye, they stick to your contact lens and irritate your eye.

 

For more information, visit AXA PPP healthcare

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http://www.kptv.com/clip/11957083/local-dermatologist-and-her-daughters-develop-skin-care-line

We are so thrilled to share our passion and story with everyone. Enjoy!

 

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