Tag Archives: illness

Joint mobilising series

This collection of movements is a multi-purpose series designed to:

  • warm up some of the major muscles of the body
  • warm up some of the major joints of the body
  • develop your physical awareness of some of the major muscles and joints in your body
  • help transition from the stresses and strains of the day towards a calming Yoga practice

It is also a very useful sequence to do if you are confined to bed, or the sofa, but are feeling achy and in need of doing something.

1. Shoulder mobilising sequence from this post

2. Leg stretch

Have your knees bent and feet on the floor/bed. Draw your right knee in towards your belly and hold the back of your right thigh with both hands. As you breathe in (inhale) straighten your leg as much as you can and as you breathe out (exhale) bend your knee back to the starting position.

Draw your left knee in towards your belly and hold the back of your  left thigh  with both hands. As you breathe in (inhale) straighten your leg as much as you can and as you breathe out (exhale) bend your knee back to the starting position.

Recommendation: repeat up to five times, building up to ten times.

Extension 1: Extend your leg, and hold the stretch for up to 10 breaths.

Extension 2: repeat the movement using both legs

Extension 3:extend both legs and hold the stretch for up to 10 breaths

3. Ankle twirls

Have your knees bent and feet on the floor/bed. Draw your right knee in towards your belly and hold the back of your right thigh with both hands. As you breathe in (inhale) straighten your leg as much as you can. Twirl your ankle around one way and then twirl your ankle around in the opposite direction. As you breathe out (exhale) bend your knee back to the starting position.

Have your knees bent and feet on the floor/bed. Draw your left knee in towards your belly and hold the back of your left thigh with both hands. As you breathe in (inhale) straighten your leg as much as you can. Twirl your ankle around one way and then twirl your ankle around in the opposite direction. As you breathe out (exhale) bend your knee back to the starting position.

Recommendation: repeat up to five times, building up to ten times.

4. Hip openers

Gently rest both hands on your right knee and move your knee in a circle by pulling it towards you. opening to the side, pushing it away from you and then taking your knee over your left hip.

Repeat with your left knee.

Recommendation: repeat up to five times, building up to ten times.

5. Reclining cobblers pose

Start with knees bent and feet on the bed / floor. when you are ready, drop your left knee out to the left side, and then drop your right knee out to the right.. Bring your soles together. If you want to you can place cushions underneath your thighs to help support your legs. You may wish to put your hands on your thighs to help increase the stretch. Just do what feels right.

Recommendation: hold for between 5 and 10 breaths.

3 gentle moves to alleviate discomfort from being in bed – mobilising your shoulders

This series of movements focusses on the shoulders. These movements can be done lying in bed or sitting up. See which position your prefer by trying them both. If you decide to practice these lying down in bed, scoot down the bed a little and make sure you have plenty of space above your head – you’ll need to freely be able to move your arms above your head.

 

Make sure your read the guidelines first.

1. Shoulder mobilising A

Start in the lying on your back, knees bent position with your arms by the side of your body, palms down. This is your neutral position.

a) Slowly bring your right arm up over your head as you breathe in.

b) As you breathe out, return your arm back to the neutral position.

c) Slowly bring your left arm up over your head as you breathe in.

d) As you breathe out, return your arm back to the neutral position.

Recommendation – repeat five times, building up to ten times on each side.

2. Shoulder mobilising B

Start in the lying on your back, knees bent position with your arms by the side of your body, palms down. This is your neutral position.

a) Slowly bring your both arms up over your head as you breathe in.

b) As you breathe out, return both arms back to the neutral position.

Recommendation – repeat five times, building up to ten times on each side.

3. Shoulder mobilising C

Start in the lying on your back, knees bent position with your arms by the side of your body, palms down. This is your neutral position.

a) Bring your right hand across to your left shoulder and try to pull your arm across as far as you can, feeling a stretch at the upper back.

b) Release and return to neutral

c) Bring your left hand across to your right shoulder and try to pull your arm across as far as you can, feeling a stretch at the upper back.

b) Release and return to neutral

Recommendation – repeat five times, building up to ten times on each side.

Round off the routine by stretching both hands up over your head and having a good stretch.

3 gentle moves to alleviate discomfort from being in bed – mobilising your neck

This series of movements is all about mobilising your neck muscles. These movements can be done lying in bed or sitting up. See which position your prefer by trying them both.If you decide to practice these lying down in bed, scoot down the bed a little and make sure you have plenty of space above your head. Remember to read the guidelines first!

1. Mobilising your neck A

Start by tucking your chin into your neck and then:

a) Roll your head towards your right shoulder

b) Roll your head back to centre

c) Roll your head towards your left shoulder

d) Roll your head back to centre

Recommendation: Repeat between 5 and 10 times to each side.

2. Mobilising your neck B

Start in a neutral position and then:

a) Drop your head to your left, as if you are trying to bring your left ear towards your left shoulder

b) Keeping your chin tucked in, roll your head to centre and then towards the right, finishing with your right ear towards your right shoulder

c) Keeping your chin tucked in, roll your head to centre and then towards the left, finishing with your left ear towards your left shoulder.

Recommendation: Repeat between 5 and 10 times to each side.

3. Mobilising your neck C

Start in a neutral position and then:

a) Keeping your chin level, turn your head to the left

b) Return to neutral

c) Keeping your chin level, turn your head to the right

d) Return to neutral

Recommendation: Repeat between 5 and 10 times to each side.

My chronic career – Teresa’s story

‘My Chronic Career’ is a (often) weekly feature here at WorkLifeSpirit, featuring interviews with people who have chronic health problems. The interviews focussing on not just their medical experience, but also the impact of their health on their life and career.

Teresa from Norfolk in the UK has agreed to be interviewed. Thanks Teresa!

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your medical history?

I have been diagnosed with Crohn’s disease in May 2005. It was thought I had appendicitis , but had an operation and they saw the Crohn’s. I then had another operation two weeks later as the medication wasn’t working. I then got peritonitis and nearly died, and so they gave me an ileostomy for a few months which was reversed in November 2005.
I was then diagnosed with arthritis and fibromyalgia. I had two operations on my elbows. I then had issues with adhesions and have had 3 further operations to try and get them to settle, but they haven’t, and so even now I am being treated.
I am on Methotrexate for the arthritis, having tried MP3 and Mercaptopurine, which didn’t work. I was on steroids for a long time and put on a lot of weight which made me feel terrible and so took antidepressants.
My last operation was November 2010 there were adhesions again, but this time it made it worse rather than better, and now I am being treated and looked at with St.Marks Hospital where I have been referred to as they are more specialist than my local hospital. I am tired all the time, and I suffer with fatigue a lot and am on a lot of opiate pain killers.

And how about your working life? What career path have you taken?

Although I was off for a while, I have been a police officer for nearly 15 years, and am now on a back to work recovery programme and now working full time hours.

Did you know about your condition before you were diagnosed?

Nope, no clue at all.

How did you find out further information about your condition when you were diagnosed?

I looked on the internet as staff at the hospital

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

I find the National Association of Crohn’s and colitis to be helpful. I also have a couple of books on the disease, and also look on crohnszone.org for information as well as other friends who have the disease.

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

The fatigue is the biggest issue for me, and where the nearest toilet is!

What is your top tip for employers – what could they do to support people with your condition?

They need to be empathetic in relation to your working space, and also where the nearest facilities
are.

What is your top tip for employers with your condition?

You are covered under the DDA and so if there is something that is troubling you then you do have the support of the disability discrimination act.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

I am normally in bed early with a hot water bottle and my medication.

Do you think you have developed any personal skills or qualities as a result of having your condition? 

I have developed more skills in finding the toilets, how to ask and explain in places when toilets aren’t public, to ask where they are.

What advice would you give people who have just been diagnosed with your condition?

I would suggest that you look at the DDA to see what your entitlements are, and also, find out where the facilities are at your place of work.

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

It is not that bad – there are going to be some bad days, and there are going to be some good days, some bad. Don’t wait around for the bad ones and make the most of the good ones.

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

3 gentle moves to alleviate discomfort from being in bed – lower body

Sooner or later after surgery, the novelty of a morphine pump will wear off, and horror (@.@) you realise that the nursing staff will actually take it away from you so you will have to retire from your career as an opium eater. You aren’t quite ready to get out of bed let alone go for a walk, but you are starting to want to move about a bit. As you are weaned off pain relief, aches and pains related to being immobile and in bed will present themselves to you.

This sequence of movements is aimed at mobilising the lower body and back, and you should be able to do them whilst in bed.

This series of movements is fantastic to do at any time, at any point. I use them all the time as warm up or cool down before my Yoga practice and also if I have back ache, it’s an excellent first aid treatment for getting rid of aches and pains.

Check out the guidelines first!

1. Pelvic tilt

In addition to helping you to engage with your abdominal muscles, this practice has the added benefit of stretching your lower back as well as activating your abdominal muscles.

a) Start by lying on your back and if possible come to a position where your knees are bent and your feet are on the floor or the bed. Put your hands on your hips and begin by pressing the back of your waist into the bed. When you first start doing this, this might be as much as you can do, and that is absolutely fine.

b) To move on, as you press the back of your waist into the bed, try to draw your navel in towards your spine.

c) For the third stage try to tilt your pelvis towards you as your press the back of your waist into the bed.

d) Finally you press down through your feet in order to lift your hips slightly off the bed.

Recommendation – start with 5 repetitions and gradually build up to 30 repetitions

2. Hug knees to belly

This is a movement which complements the pelvic tilt very well. This stretches out the back of the body and can be very helpful in starting to restore your mobility. The action of bringing your knees up on to your belly helps you to get to know your insides again after your surgery.

a) Begin with your knees bent and feet on the floor / your bed. If you can, use your hands to draw your right knee towards your belly and hold this position for a few breaths and then release.

b) Keeping your knees bent and feet on the floor / your bed. If you can, use your hands to draw your left knee towards your belly and hold this position for a few breaths and then release. notice if this side feels different to the first side.

c) If you want to you could repeat this movement on each side, but this time pull your knee in closer to your belly. You should feel a stretch in your lower back and the back of your hips along with gentle pressure on your abdomen.

d) Once you have become familiar with the movement on each side, try bringing both knees on to your belly, one at a time. Hold for a few breaths and then release.

e) If you want to you could repeat this movement with both knees on your belly, but this time pull your knees in closer to your belly. You should feel a stretch in your lower back and the back of your hips along with gentle pressure on your abdomen.

Recommendation – start with 5 repetitions and gradually build up to 30 repetitions

3. Supine Twist

a) Come to knees bent and feet on the bed or the floor, if you are doing this on the floor. Have your knees and feet together. Use your folded towel and both hands to apply gently pressure on your abdomen. Very gently drop your left knee to the left until it is resting on the bed / floor. If your knee won’t go that far, then use a pillow to support the knee at whatever height is comfortable for you. Then drop your right knee to the left knee so that the right knee and ankle are resting on the left knee and ankle.

b) Rest here for a few breaths feeling the stretch along the right side of your body.

c) Come back to the starting position. Have your knees and feet together. Use your folded towel and both hands to apply gently pressure on your abdomen. Very gently drop your right knee to the right until it is resting on the bed / floor. If your knee won’t go that far, then use a pillow to support the knee at whatever height is comfortable for you. Then drop your left knee to the right knee so that the left knee and ankle are resting on the right knee and ankle.

d) Rest here for a few breaths feeling the stretch along the left side of your body.

Recommendation – start with 5 repetitions and gradually build up to 30 repetitions

Finish the sequence with a couple of repetitions or the pelvic tilt or the knees to chest.

Draft medical history proforma – so you don’t have to repeat yourself endlessly

One of the most frustrating things about Crohn‘s (especially if you have blockages and adhesions) is that you can unexpectedly end up in hospital all over the place. I had a period of a few years where every holiday was doomed to end up with me in hospital somewhere – eventually the problem was found.  It turned out that there was a grapefruit sized abscess wrapped around my bowel which led to exciting impromptu re-enactments of ‘that scene’ from the exorcist.

I now have an outline of my medical history to give to medical staff on my ‘travels’. The aim of the outline is to help me remember key dates and events, which can be forgotten in the begging for morphine confusion of admission.

I have attached a draft version of the outline here to share with readers: Summary of medical history_Draft in order to get some comments from you about it.

  • Is there anything I have missed?
  • Is there about the right amount of space or do you want more?

Medical staff often ask you to repeat your medical history as a way of:

  • building rapport
  • checking you are compos mentis (composed mind)
  • checking that you are not suffering any ill effects of medication
  • checking for delirium that comes with fever

So having an outline to hand won’t necessarily reduce the number of times you are questioned but it will make a difference when it matters.

It is also useful to have to hand so that a carer, friend or relative can give all the important details to medical staff if you are not able to coherently communicate. This can happen if you have a fever or are in considerable pain.

So do let me know what you think about the draft version (here: Summary of medical history_Draft) and then I will upload a final version for you to write your own outline.

My Chronic Career – Warren’s Ulcerative Colitis

‘My Chronic Career’ is a (often) weekly feature here at WorkLifeSpirit, featuring interviews with people who have chronic health problems. The interviews focussing on not just their medical experience, but also the impact of their health on their life and career.

Warren Berman from Birmingham (UK) has very kindly agreed to be interviewed. Thanks Warren! Warren has Ulcerative Colitis and his medical journey is not typical – he’s had a lot to deal with in a short space of time.

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your medical history?

Prior to being becoming ill with Ulcerative colitis in March 2010 I hadn’t had any real medical problems since I used to suffer with as Asthma as a child and had only missed 1 day of work through sickness in the previous 5 years. Looking back prior to ever hearing a GP mention Ulcerative Colitis I had been suffering with symptoms for about 5 months. However I mostly ignored them and when I did visit the doctor I was advised it was probably just Gastroenteritis. As I always naturally seemed to get better I ignored when I had a series of a few days where I was ill. Eventually the series of a few days didn’t stop and my symptoms became worse. By the middle of March I went to my GP again and was advised it was probably Ulcerative Colitis or Crohns and was booked for a flexible sigmoidosopy in 10 weeks. My condition became worse over the next week and went to the doctors and but saw a different GP and was advised he couldn’t do anything and to wait for the flexible sigmoidosopy. My health deteriorated further over the next week, upon seeing my GP again was referred straight to hospital in Birmingham as an emergency admittance. This was my first also my
first sick day which ended up lasting 5 months. I was treated in hospital and after 8 days was told I was doing well and could home on medication and come back in 4 days to see how I was doing. I went back to stay with my family in Leicester, but on the hour drive to theirs my condition deteriorated again and had a large scale flare up and back in Hospital in Leicester the following
morning. I was put onto multiple different medications including immunosuppressants, but they were only ever effective for a few a days and I would flare up again. After a month of trying to treat me medically in hospital I was advised surgery would be the only option and had a total colectomy leading me to have an Ileostomy Bag with the aim to have a reversal over the next 6 months to a year. However from the outset after surgery I suffered from proctitus, ulcerative colitis flare up from the rectal stump that was left. These flare ups would occur like clockwork on a weekly basis.

However after 5 months The flare ups increased in frequency and painfulness until I was under a permanent flare up. My GP admitted me to hospital, I was there overnight and prescribed some prednisolone and discharged. This did not work and over the next 2 weeks my GP increased my medications until I was referred back to hospital again. After receiving stronger and different medication over the next 2 weeks I was advised the rectal stump left after the first operation was totally infected and would have to come out. After having so many problems in such a short period and with medication never working I had an operation to remove my rectum and lead me to now have a permanent Ileostomy without the possibility of a reversal. Knowing I would have to live with the bag for life became a real issue immediately after the operation as it I had only just gotten
around to the idea of having this ‘foreign’ bag attached to me but now I would have to have it for the rest of my life. I had several post operative complications after the second surgery but now am fully healed.

And how about your working life? What career path have you taken?

I have achieved a BSc in Psychology with Sociology and a Masters Degree in Occupational Psychology. This helped lead me to my current career in the NHS where I work in informatics. I had recently been promoted within Birmingham Children’s Hospital when I first became ill and was admitted to hospital 3 months into the new job. My employers were incredibly supportive and whilst
in hospital was in contact by the director from another department I had previously completed a project for. They advised a position would be opening up soon and they encouraged me to apply for it if I was fit. I ended up applying for the job and was successful in becoming the Clinical Information Manager for Theatres Anaesthetics and Acute Pain (long job title). I love my job and have been in the role since October 2010. Unfortunately again 3 months into my new job I became and lead to the second operation and another 5 months off. I have now been back at work for 6 weeks with my permanent Ileostomy but love being back. I have recently been made the Directorate Lead For IT, it is clear that the issues I have had in the past have not impacted on my development or the worth I have at work.

Did you know about your condition before you were diagnosed?

I didn’t know anything about Ulcerative Colitis, Crohns or any form of Inflamatory Bowel Disorders.

How did you find out further information about your condition when you were diagnosed?

Initially I didn’t look up anything as my GP didn’t explain anything about the condition and I (stupidly) assumed it would be something that would get better over time on its own or need a few pills. From the people and medical professionals I have spoken to about Ulcerative Colitis it is quite rare to have such a short period between initial diagnosis and needing an operation (just over 7 weeks in my case). But when I was in hospital I mostly used my phone to google info using Wikipedia to find info but also looked at forums. But being in hospital after being seemingly fine made it quite difficult for me to search for information as I didn’t want to know about the negative impact it would
have on my life.

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

After the first operation I mainly just used Google still to look for information. After the first operation I was misinformed that any flare ups were now just part of life and was never referred to a gastro consultant. Whenever I brought up the flare ups with my surgeon, stoma nurse or GP I was just told you could still have flare ups even after a colectomy. Because of this just thought it was something I would need to live with so didn’t really do much further research.

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

Initially I had some very big problems finding an Ileostomy Bag that didn’t leak which made me incredibly paranoid about going back to work after the first op. I remember coming back from the job interview or my current position and by the time home my bag had leaked. I think part of resolving that was being proactive with the Stoma nurses and finding a bag that would work and could have confidence. All in all I went through 4 different bags and several extra products to help find a bag that would last over 24 hours. But losing and putting on weight changes the bodys shape and can again cause problems with bag leakage. So I keep a spare shirt and Ileostomy bag at work just in case.

One of the bigger issues I face at the moment is as a result of the operations a recent blood test had identified low iron levels and I’ve been diagnosed as anaemic. Because of this I can become very light headed and fatigued quite quickly. Missing meals makes the light headedness and tiredness worse. Although not the most lovely of subjects, it can be incredibly painful when the Ileostomy bag fills up whilst wearing a suit. As well, although when the bag is empty, it would be difficult to tell that anything is there, however when it fills it can make an obvious lump, that I do not want to have to explain or have other people be aware of. Because of this I am to be very proactive in managing my
diary to ensure that I am able to have lunch with sufficient time to go toilet and empty the bag or move about to reduce the pressure on the bag and make life more comfortable.

What is your top tip for employers – what could they do to support people with your condition?

I’ve been lucky in that my employers have been incredibly supportive with me and allowed me all the time and space needed to recover after having 2 operations in fairly quick succession. I think for me the most important thing is just being supportive. It can be an incredibly embarrassing condition to talk about with a lot of the symptoms of a flare up being not the nicest things to discuss.
Even after the operations it’s difficult discuss with someone who’s not gone through it. I think that whenever an presented with any type of chronic medical disorder or disability, employers should educate themselves on its impact and be supportive with any realistic changes.

What is your top tip for employees with your condition?

I think practical measures if you have a bag are avoiding meetings straight after lunch if you can help it, or at least giving yourself time for a to go to the toilet etc.

But I think on a more general level that because Inflammatory Bowel Disease’s in general is not an easy subject to broach, it’s quite easy to ignore telling employers what you’re actually going through. This type of disorder will be covered under the disability and discrimination act and should be taken into account if any sick days are caused by it. Not only that but reasonable adjustments can be made. I used to be a manager in a call centre where ‘personal’ times would be logged. The number of trips to the bathroom I would take when I had Ulcerative Colitis would have been seen as excessive and I would have been performance managed because of it. Unless employers know about
your condition they can’t help you.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

After the 2 operations to remover my colon and rectum I am now Ulcerative Colitis free, so flare ups is now no longer an issue. When I was having flare my coping mechanism was to sit on the toilet and wait for the pain to end, then lay down for a few hours. Others can probably give better coping mechanisms.

Do you think you have developed any personal skills or qualities as a result of having your condition? 

I now always know check there is toilet roll in the toilets before emptying the bag!!!

What advice would you give people who have just been diagnosed with your condition?

It’s not the end of the world. I only knowingly lived with Ulcerative Colitis for approx 7 weeks before needing an operation. Even though the thought of having an Ileostomy was scary there is so much support and information available it can be overwhelming. I would avoid reading clinical information straight away as it can be quite blunt and scary. Try and speak to real people who have gone through it as they can give a more realistic view how things actually are..

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

Just because you can’t see the pain or discomfort doesn’t mean it isn’t there. It’s not something that you can just grin and bear and carry on with life. And just because you’ve had food poisoning doesn’t mean you can identify with a flare up or comprehend what life’s like living with a bag attached to for the rest of your life. Constantly saying ‘chin up’ is not always the most helpful advise, acknowledge that yes the situation is crap, but you’re not going anywhere. People always need a hug.

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!

Vegetables that won’t destroy you if you have Crohn’s or Colitis (apparently)

Continuing the theme of food that won’t destroy you if you have Crohn’s or Colitis (Last week’s fruit post is here).

As before, my first port of call, and the inspiration for today’s post, was What to Eat with IBD: A Comprehensive Nutrition and Recipe Guide for Crohn’s Disease and Ulcerative Colitis by Tracie Dalessandro, who is not only a registered dietician with a masters of Science in nutrition, but also a Ulcerative Colitis and subsequently Crohn’s Disease sufferer. I extracted her list of ‘Vegetables that heal’ from chapter 2 below and ran then through the nurtient tool over here.

Tonight, I have just researched the following:

  • Beta-carotene / Vitamin A – improves resistance to infection, supports growth and repair of tissue; maintain health skin and mucous membranes (Need 5000IU per day)
  • Vitamin D – Needed for proper formation of the skeleton and maintaining the mineral balance in bones (Need 60oIU per day)
  • Vitamin C – Anti-oxidant, wound healing, formation of collagen and appropriate immune responses (Need 60mg per day)
  • Folate – necessary for proper cell division – especially in IBD patients (400mcg per day)

Here is the list of vegetables that heal, based on 100mg, cooked without salt, unless otherwise stated. Brocolli, Collard Greens, Arugula, Asparagus, Butternut Squash, Carrots, Peppers and Sweet Potato stand out as the the superfood here, but almost all the vegetables on the list have a role in supplying a important vitamin:

  • Acorn squash Vitamin A: 817IU; Vitamin C: 11mg
  • Arugula (raw) Vitamin K: 109mcg; Vitamin C: 15mg; Folate: 97mcg
  • Asparagus Vitamin A: 1006IU; Vitamin K: 51mcg; Vitamin C: 8mg; Folate: 135mcg
  • Broccoli Vitamin A: 1548IU; Vitamin K: 141mcg; Vitamin C: 65mg; Folate: 108mcg
  • Butternut Squash Vitamin A: 11155IU; Vitamin C: 12mg; Folate: 16mcg
  • Carrots Vitamin A 17036IU;  Vitamin K: 14mcg; Vitamin C: 4mg; Folate: 14mcg
  • Cauliflower Vitamin K: 14mcg; Vitamin C: 44mg
  • Collard greens (very soft) Vitamin A: 8114IU; Vitamin K: 440mcg; Vitamin C: 18mg;Folate: 93mcg
  • Endive (raw) Vitamin A: 2167IU; Vitamin K: 231mcg; Vitamin C: 6mg; Folate: 142mcg
  • Kale (very soft) Vitamin A: 13623IU; Vitamin K: 817mcg; Vitamin C: 41mg;
  • Lettuce Vitamin A: 8711IU; Vitamin K: 103mcg; Vitamin C: 4mg; Folate: 38mcg
  • Parsnips Vitamin K: 1mcg; Vitamin C: 13mg; Folate: 58mcg
  • Peppers (red) Vitamin A: 3582IU;  Vitamin K: 5mcg; Vitamin C: 171mg; Folate: 10mcg
  • Potatoes Vitamin K: 2mcg; Vitamin C: 13mg (skin on baked, 7mg boiled, no skin); Folate: 28mcg
  • Pumpkin Vitamin A: 4992IU; Vitamin K: 1mcg; Vitamin C: 5mg; Folate: 9mcg
  • Spagetti squash Vitamin A: 5224IU; Vitamin C: 4mg; Folate: 12mcg
  • Spinach Vitamin A: 10481IU; Vitamin K: 494mcg; Vitamin C: 10mg; Folate: 146mcg
  • Sweet potato Vitamin A: 19217IU; Vitamin C: 9mg
  • Tomato (without skin) (Raw) Vitamin A: 833IU;  Vitamin K: 8mcg; Vitamin C: 13mg; Folate: 15mcg
  • Yam  Vitamin K: 2mcg; Folate: 16mcg

My chronic career – Crohn’s and the professional hospital patient

‘My Chronic Career’ is a (often) weekly feature here at WorkLifeSpirit, featuring interviews with people who have chronic health problems. The interviews focussing on not just their medical experience, but also the impact of their health on their life and career.

Michael A. Weiss from the Northern New Jersey/New York City Area (USA) has very kindly agreed to be interviewed. Thanks Michael!

Michael’s website is www.hospitalpatient.com  and he has written a book on his experiences called Confessions of a Professional Hospital Patient which you can buy through Amazon in the US and the UK.

(Please come forward to be interviewed if you work and have a chronic health problem by contacting me)

Can you tell me a bit about your medical history?

After athletic teenage years filled with a few bizarre Medical ‘Incidents’, I played and partied my way through college until shortly after graduation when the auto-immune aspects of what I was to learn was Crohn’s Disease started to become more pronounced.

More specifically, I had Four (4) Wisdom Teeth extracted at the same time, a common practice back then (i.e., in 1984), but after initially recovering each side of my face swelled up for MONTHS afterwards.  I looked like a confused Chipmunk and my Dentist and Doctors were absolutely perplexed. I tried every antibiotic imaginable and they even considered placing me in a hyperbaric chamber to help me heal.

Then I started complaining of frequent onsets debilitating joint pain and overpowering feelings of lethargy.  I also would suffer extreme allergies to the point where I couldn’t get out of bed while others simply struggled with the typical hay fever symptoms.  My Doctors started to question my veracity and as a tough, confident and passionate young man, that seriously bothered me because the last thing I wanted to do was lie in bed or not ‘compete’.

It all came to a head, however, a few weeks later when I was at the 3rd day of some ‘just killing time’ job in New York City and the staff decided to celebrate a co-worker’s birthday with flavoured popcorn which was quite popular back then.  Little did I know that Popcorn is to Crohn’s Disease as Jennifer Lopez is to Marriage and approximately an hour later the crampy pain was so intense that I locked myself in the bathroom of this corporate office whose workers I barely knew.  I was hoping it would pass but instead I soon passed out!!!!

Somehow these very nice people called an ambulance and I wound up in a Hospital for 2 weeks where I was diagnosed with a classic case of Crohn’s Disease.

While this ordeal sounds tough, the one GREAT thing about it was when the Doctor handed me some pamphlets from the Crohn’s & Colitis Foundation (the CCFA) which described the symptoms of Crohn’s Disease and it was like reading a diary of the past 18 months of my life.  It was incredibly validating and I think I was on the verge of even losing the support of friends and family at that point in time. When they read the pamphlet their skepticism turned into tremendous respect for me and how I had dealt with this very difficult disease over the past 18 months.

Unfortunately, my case of Crohn’s Disease, which is a broad spectrum chronic illness, was very aggressive and required many hospitalisations (200+ and counting) and surgeries (approximately 20) over the next 20 years or so.   After that it has been the auto-immune aspects which have affected other parts of my body and most recently I had to pay the piper for some very effective Anti-TNF Agent Drugs which had kept my Crohn’s Disease in remission but came with the risk of upper respiratory problems.  Well, those problems turned into recurrent pneumonia and  only a few months ago they necessitated lung surgery as I have some inflammatory lung disorder known by the acronym B.O.O.P. and it is quite serious.  In fact, the only successful cure is ONE (1) YEAR of a high daily dose of steroids (i.e. prednisone) so the potential cure is proving to be as problematic as the underlying illness.

And how about your working life? What career path have you taken?

After being diagnosed with Crohn’s Disease, I was hell-bent proving to everyone, including myself,  that you can still have balance in your life despite having to live with a chronic illness.  As a result, I obtained my MBA degree and then my Law Degree and practiced Entertainment Law for several years.  I also maintained an active social life as no matter how sick I got, I never looked the part.  Having said that, however, I don’t think I respected the illness as much as I should have because I probably went too far in proving to myself that I was not as chronically ill as I really was.

This became more evident to me in my late 30s (I’m 48 presently) as my mind kept making promises that my body couldn’t keep.  But I’m one of those people who never regrets what he didn’t do, i.e. I will only regret the things I did do.

I picked very social industries to work in (i.e., the Film and Entertainment Industries) and had a blast transforming from attorney to business affairs to film producer.  The film producer part ultimately made me face having to relocate from the New York/New Jersey area all the way out to Los Angeles, California.  During that contemplative process, I realised that my illness was either going to be an albatross that would keep me on the East Coast or it would be the ‘Fear I Faced’ in order to move forward with my life’s dreams and aspirations.  I didn’t realize how attached to my doctors I had become and that was the big obstacle.  However, the very fact that it was an obstacle proved to me that I had to do it otherwise I could never look myself in the mirror.

So, I ‘interviewed’ several doctors each time I was out in LA on business and eventually I connected with a few and it was only after I had fully committed like that when a job offer appeared seemingly out of nowhere and shortly thereafter I was a bona fide resident of Santa Monica, CA.  Life works in strange ways but I learned that someone is listening!

I must also say that in the middle of my career as an entertainment industry executive, I started to write about my interactions with the Healthcare System as my friends found my Hospital and Doctor stories to be strangely hysterical.  The result was my first book entitled, “Confessions of a Professional Hospital Patient.”

I have been told that the book Is not only the most accurate account of what it is like to be a patient both in and out of the Hospital but its candor and laugh-out-loud humor makes it an uplifting reading experience – and who would have thought that about a book which  attempts to teach people how to live, love and laugh with Chronic Illness!

While I wrote the book in 2001 when there was a national debate about a possible “Patient’s Rights Bill” and that landed me on many mainstream media TV/Radio Shows including NBC’s coveted “Today Show,” the tragic events of September 11, 2001, understandably changed the focus of the global dialogue.  I was literally poised to be on all of those TV Shows where people shared their bizarre experiences for the benefit of others and I’m sure that would have sold a great deal of books.  However, I learned a great deal during the exciting experience of being on different TV shows and radio stations and I thought the future was going to be all about the Web so I purchased every “hospitalpatient” domain name possible and planned to eventually start writing about Healthcare on the Web.  In fact, the URL, www.HospitalPatient.com, is printed on the Book’s Spine.

There was something about new media which I found fascinating and my career in Film and TV was also gravitating in that direction so things seemed to be moving forward despite Healthcare not being the Number 1 priority for the USA.

Thanks to the resurgence of interest in Health-Care Reform and the advent of new and social media, my first book has become an “Evergreen” seller and that has provided me with the privilege of being able to reach and influence the growing niche of people living with some form of chronic illness. To that end, I have been focused on helping with the global development of “Health Care Social Media” (“HCSM”) utilizing a variety of Social Media Platforms such as posts on Twitter, Podcasting on YouTube, and Articles on my Blog as I believe HCSM is the patient-driven medium that will be the “Game-changer” we need to offset the Cartel-like business practices of most health insurance companies.  But I always try to make my approach to Healthcare FUN and I never lose my sense of humor about my plight.

Did you know about your condition before you were diagnosed?

No.

How did you find out further information about your condition when you were diagnosed?

I detailed this a bit above but I’d like to add that beyond being validated by the initial symptom information I learned about Crohn’s Disease from those CCFA pamphlets, I took a Groucho Marx approach in that: “I don’t care to belong to a club that accepts people like me as members.”  By this, I mean that I did not want to belong to the different Support Groups for Patients with Crohn’s Disease because I saw those people as being SICKLY and I’m was an athletic “party person.”  Therefore, what could possibly learn from them?   Well, as Life has turned out, I probably have one the most unique cases of Crohn’s Disease in the world and/or my record of being hospitalized over 200 times with almost 20 surgeries would certainly qualify me to be a member of such Support Groups.  Moreover, a day doesn’t go by when I am not helping another Crohn’s Disease Patient on Twitter or addressing their complimentary emails about my Book, etc.  So, for someone who shied away from other folks with Crohn’s Disease, they now seek me out for my information and I am honoured to share it with them.  I guess that means I have finally grown up after all.

Finding information is different now with the internet, which sites do you find useful in terms of information / support and advice about your condition?

Any site that shows an awareness of “Health Care Social Media” (“HCSM”) is usually credible for me.  This ranges from Healthcare Portal sites like WEGO Health to the Yahoo Group about Crohn’s Disease to certain Podcasts and some Facebook pages.  Some ‘Patient Community’ sites are also becoming reliable sources of information.   I think it is important to understand that you are going to meet people on the Web who have an agenda which skews their ‘data’ and until you figure out how to screen those people the benefits you will get from the Web will be limited.  Therefore, I suggest that people use HCSM tools but in a ‘diversified’ manner so that they stand a better chance of getting credible information.  Lastly, when a content provider or patient only writes about extremes – good or bad – I usually find that NOT to be very credible as I would prefer a more consistent Blogger or Podcaster because the reality is that most interactions with the Healthcare System are routine.  The extremes should stand out as just that and not be the norm.

Thinking about working and having your condition – what do you find / have you found most difficult to manage / cope with in the world of work?

Crohn’s Disease and working in a very structured high pressure environment is not a good combination.  With that as a Foundation, I think it is important that you understand your illness and then find employment that is reasonably best suited towards its ‘disposition’.  For me, that meant I had to work at small companies and then ultimately on my own.

I have worked for law firms and larger companies and they have all been very respectful toward my illness but I always sensed resentment (on their part) or guilt (on my part) and I didn’t like that.  I preferred to work in an environment where my contributions were gauged on their quality and not on ‘Face Time’ (i.e., number of hours worked on a weekend or just being seen in the office on a weekend).

There were many embarrassing situations at work due to the ‘bathroom-nature’ of Crohn’s Disease and that just taught me a great deal about my own resolve because people think it’s because you can’t handle pressure when you know you can and that it is just your illness acting up at an inopportune time.  Lastly, I learned that when you have a Chronic Illness and you have issues in the workplace, it is best to use your illness as a shield and not a sword.  I mention this because of the various Disability and Discrimination Laws as patients shouldn’t be taking advantage of these laws that are meant to protect them.  So long as you follow that edict, people will respect your plight and they will do everything they can to help you.

What is your top tip for employers – what could they do to support people with your condition?

Flex-time and/or Working from home (with the proper technology) so that people in general, and specifically those with Chronic Illnesses and Disabilities, can work smart and efficiently.  There is too much emphasis placed on ‘working hard’ or working long hours, when the focus should simply be on getting the job done.  If employers make it clear from the get-go that all employees will be judged based on  their performance, I think it will ease up the stress and then tools such as Flex-Time and Working From Home (when necessary) can be vital to smart working (This approach became crystal clear to me after reading the tremendously insightful Book, Four hour work week by Timothy Ferriss.  As an attorney who billed by the hour, I never understood why clients let law firms get away with that type of billing arrangement.  It’s as if clients will accept the inefficiencies of some attorneys who may not be as talented as the ones they think they are hiring.  To that end, if you are so talented then any chronic illness or disability should not matter because ultimately it is all about working smart and getting the job done.)

What is your top tip for employers with your condition?

Get educated about the broad spectrum of Crohn’s Disease and also about how serious it can be. Learn about the needs of a Crohn’s Disease Patient so that when your employee rudely darts out of a meeting to use the bathroom, don’t be so quick to judge.  Conversely, I think the Crohn’s Disease Patent must educate his or her employer if such instances are going to occur.

When you have a flare up of symptoms – what is your ‘coping mechanism’?

I think about the incredible support system I have and that so many people respect how I manage my illness.  I never feel sorry for myself or wonder ‘Why Me?’ as I think those are wasted emotions.  I am always focused on doing whatever I can to move forward.   If I have a flare-up and my body obviously is not cooperating with my plans for that day, I try to nevertheless somehow be productive by listening to an audiobook or reading a magazine I never would normally have the time to do.  When I must completely shut down and sleep, I try to embrace that scenario and realize that I will get to fight another day.

Do you think you have developed any personal skills or qualities as a result of having your condition? 

LOL. Yes.  I’ve become a realist who is accustomed to battling all types of adversity.  It is often frustrating that my Life seems to be largely about staving off devastation of one form or another but the fact that I can write about it and share how I did it with similarly afflicted people makes me feel as if it is a good thing that I got Crohn’s Disease as opposed to someone else who may not have coped with it as well as I have.  But please let me say that I only cope with it this well because of the lessons I’ve learned over the years through the relentless support of Friends and Family.

What advice would you give people who have just been diagnosed with your condition?

Don’t listen to everything you hear or believe everything you read.  They are making great strides in treating Crohn’s Disease and the longer you live – the longer you live.  Meaning that if you are able to keep going, they may find a Cure in your lifetime.  Also, having Crohn’s Disease won’t be a Deal-Breaker in terms of human relationships (i.e., Friend, Lover, Employer, etc.)  but how you handle having Crohn’s Disease will be.

What advice would you give to the family and friends of someone who has just been diagnosed with your condition?

If you really care about the person, please buy my Book, Confessions of a Professional Hospital Patient and get educated about what Crohn’s Disease is and what it is like to live and cope with it.  The book is available at Amazon.com, Barnes and Noble and easiest to purchase at www.HospitalPatient.com as there is a picture of the Book with a Click-Through to the Amazon.com Page on which it is sold.

Do you have a chronic health condition and a career? If so please come forward to be interviewed by contacting me!