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Living On Steroids

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If you follow the news you will have no doubt seen the recent pictures of the magician Dynamo.  He took to social media to show the effects that the steroids used to fight his Crohns Disease, were having on his physical appearance.  The photos showed the typical, bloated ‘moonface’ that many of us who are on, or have received steroid treatments, will know too well.

My Journey With Steroids

I, like Dynamo, suffer from Crohns Disease.  I also have rheumatoid arthritis and iritis.  For these three illnesses, steroids are  commonly used to reduce the inflammation associated with a flare.  My earliest experiences of steroids, as a child, were all injection based.  I would regularly have intra-joint injections of steroids to help treat them when flaring with my arthritis.  These injections, although unpleasant, would generally help settle down a joint that was giving me problems.

Aged seven I was diagnosed with iritis.  This causes inflammation of the iris and common in children who have been diagnosed with arthritis.  The treatment for this was steroid eye drops.  Occasionally – apologies to the squeamish – I would also have them injected into my eyes.

My first experience of being given a course of steroid tablets is one I will never forget.  I was 18 and having a severe flare of my iritis.  My ophthalmologist thought that, alongside the eye drops, a course of steroid tablets would be needed to get it under control.  Iritis can cause blindness, so it is important to get the flare sorted as quickly as possible.  I was sent home on 80mg a day, never imagining the side effects that I would experience.

At the time I was working as a nursery nurse.  I loved my job, and went straight back to it after my appointment was over and I had taken the first dose.  That night, I barely slept but didn’t think much of it.  When it happened the second and third night, I found myself getting more and more poorly.  I felt like I was going crazy – no sleep and the worst feeling of being down that I had ever experienced.  I finally went to see my GP and cried and cried.  I didn’t know what was happening to my mind or body.  He explained that the steroids I had been given were causing these symptoms and that I was on an extremely high dose.  He signed me off work, slashed the dose down by half and got in touch with my ophthalmologist to follow me up ASAP.

At the time my knowledge was limited and not what it is now. I was so scared and also frustrated that these extremely common side effects had not been mentioned to me.

At the age of 22 and after having my first baby, I started having severe issues with my left hip.  It wasn’t a joint (one of the only ones) that my arthritis affected and I was sent to orthopaedics to have it checked out.  Turned out that the steroids over the years had caused a condition called avascular necrosis in my hip bone, basically killing off the blood supply to the majority of the ball part of the ball and socket joint.  Aged 22 and a half I received a total hip replacement and one huge scar!

There was yet more to come.  I had struggled with bowel problems since the age of 8 or 9, which were often put down to the medications I was on for my arthritis.  Aged 26 these problems got much worse and I was sent for a colonoscopy and then diagnosed with Crohns Disease.  The treatment to get my flare under control?  You guessed it – a course of steroids.

I was put on 40mg to start with and then had to taper them down over the coming weeks. You can’t just stop taking steroids and have to drop your dose gradually in order to give your adrenal gland the chance to kick in and start producing cortisol by themselves again.   Unfortunately, I had been on them almost continually since my second son had been born the year before as they couldn’t get my arthritis under control, and haven’t been off them since.  Seven years and counting!

Living On Steroids

Steroids have ravaged my body, I also now suffer with ostopenia (the precursor to osteoporosis) due to my long term use of them.  I struggle with insomnia and night sweats.  I have needed cataract surgery for a cataract which was caused by the steroid eye drops I have used over the years to treat my iritis. I am on two other medications to help with the side effects of the prednisilone (the type of steroid I am on).  During three major flares which have resulted in hospital stays, I have been hooked up to IV steroids.  My appetite is huge and I have gained weight.  And finally, after a severe flare last year and large doses of IV steroids on top of my tablets, I now have the dreaded moonface.

Steroid ‘moonface’ in full swing

My ‘normal’ face

Somehow, being able to physically see the effects these medications have on you, right there every day in the mirror, makes it all so much harder to deal with.  This is not to say that I am not grateful to the steroids I have been given over the years.  They work wonderfully well at what they do, it’s just a shame, that for some, the side effects can be so numerous and severe.  Unfortunately they are a necessary evil when suffering from auto-immune conditions as I am.

I am finally on a reducing plan to get me off the devil’s tic-tacs (Crohnsfighting’s perfect nickname for them) for good.  Because of the length of time I have been on them, it may not be possible to stop them completely.  For now I am on a very slow plan to wean my body off them.  My sleeping is already improving although I am still struggling with the night sweats and increased appetite.  For anyone on them, or asked to start them, here are my top tips for you –

  1. TAKE THEM IN THE MORNING – This is the best way to ensure they don’t interrupt your sleep
  2. WORK WITH YOUR DOCTOR ON A REDUCING PLAN – Have a clear plan in place when you are put on the steroids.  Know how much you are taking, and when to lower the dose
  3. SIDE EFFECTS – Make sure your doctor also prescribes a calcium supplement to help protect your bones and something to protect your stomach (I am on Omeprazole but there are a couple of others that can be used for people who cant have that)
  4. MOOD CHANGES – Steroids can alter your mood so see your doctor ASAP if you experience this and are struggling mentally
  5. NEVER JUST STOP TAKING THEM – It’s dangerous!  Your body needs to wean off them slowly.  If you are struggling with side effects, see your doctor as soon as possible rather than just stopping taking them and they can advise on what to do

Check out my poem – ’10 Things I Hate About Pred’ over on my blog, The Spoonie Mummy

The post Living On Steroids appeared first on talkhealth Blog.

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Interview: An insight into living with MS

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MS Awareness Week

MS has a huge effect on the lives of those diagnosed with the condition. With this week being #MSAwarenessWeek, talkhealth have teamed up with the MS trust to help give others an insight into living with the condition. Today, we caught up with a young teacher, Jenna, who has been part of the MS trust’s campaign for #MSAwarenessWeek.

Jenna is living with MS, and talkhealth got the chance to interview her about her life and experiences with the condition.

talkhealth: How supported did you/do you feel after being diagnosed with MS?

Jenna: For a few days after my diagnosis, I remember feeling quite lost. I hadn’t previously heard of MS and so I was very confused as to how my life would change. It was after I had come to terms with the fact that I had been diagnosed with a lifelong condition that I started to investigate online through the MS Trust website and read through the information guides that I was provided by my neurologist.

TH: Did you find it easy to get help and advice about MS in these early stages?

J: Yes and no. Simply typing the condition into Google will provide you with masses of information. But, this information is often full of medical terms that, unless you are familiar with the condition, can be quite overwhelming to take in as a young adult. It was only after I met my MS nurse a month after diagnosis that I was able to find answers to all of my questions and these answers were tailored to my specific needs or concerns.

TH: Has it impacted how you socialise and interact with your friends and family?

J: More recently, yes. I find that I feel tired a lot quicker than I used to and this means that I sometimes have to limit how much I can do during a day. I initially found it a little upsetting that others couldn’t understand why I had to pass on a particular social event or return home early, but that’s no longer the case. Perhaps this is because I am a lot more open about my condition and the effects of living with MS.

TH: Do you feel it has impacted your work? Have you found ways around this?

J: Being a full time teacher was always going to be a demanding job. That being said, during the early stages, the only way MS affected me was having to return home as early as possible so that I could take my medication, which at the time was administered through an injection. MS has affected my work more over the last couple of years largely due to fatigue kicking in. I have attempted to find ways around this by tackling more strenuous activities, such as marking long essays, during the day when I feel I have more energy. I also listen to my body and try to take rest breaks, well, when I can.

TH: What advice would you give a young person who may be worried about MS?

J: I would want them to know that being diagnosed with MS doesn’t mean that you have to say goodbye to your dreams and ambitions. I still pursued a career in teaching and sky-dived soon after being diagnosed! I would also try to reassure them that they have been diagnosed at a time when new medications are always coming through to make managing MS that little bit easier.

The post Interview: An insight into living with MS appeared first on talkhealth Blog.

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Advice for young people living with MS

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MS Awareness Week

Every day this week, the MS trust will be releasing a new YouTube video starring a young person who has been affected by MS. This is all to help aid #MSAwarenessWeek and aims to highlight the condition to younger people. Over 70% of those with MS experience symptoms before the age of 20, so raising the awareness of this condition to younger people is critical.

Today’s video stars beauty vlogger Nic Haste, one half of YouTube makeup duo Pixiwoo. In the video she discusses her life and experiences with MS and offers advice to those out there who may have been recently diagnosed. You can watch the full video below:

Yesterday played host to Chloe, a young person living with MS, who got to quiz a neurologist on who gets MS and why. You can watch that video here.

If you want to keep up to date with each new video from the MS Trust this week, our blog will feature the new video every day, or you can head to MS Trust’s YouTube page for MS Awareness Week.

The post Advice for young people living with MS appeared first on talkhealth Blog.

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Living in a house full of nuts

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And I don’t mean the people are crazy… haha, I mean nuts, particularly peanuts make an appearance on a regular basis where I’m living at the moment.

I did grow up in a house with peanuts; my father used to make his own peanut butter, my siblings both used to eat nuts and even the eczema bath oil I was prescribed contained nuts – not surprising that I had such appalling eczema really…

Having a lifelong and life threatening allergy to all nuts has meant that as soon as I had the choice and control over my living space I have never had nuts in the house. Well why would you? If you hate the smell and one tiny crumb could send you into an anaphylactic shock. It meant I had one place that I didn’t have to worry about avoiding my allergens.
The lonely peanut, By Ruth Holroyd
Not so in my current living situation.

Living in a shared house with THREE nut eating men was worrying me a lot to start with.

Not great when you are already learning to cope with anxiety on a daily basis.

But I’ve been pleasantly surprised.

There are three single guys living here. One vegan and one coeliac amongst them which does mean they understand what living with food restrictions is like, even if they don’t have allergies like me.

But how cool is that? Without any prior knowledge before choosing this room to rent, I have found two fellow food group avoiders! I immediately felt at home.

After the ‘house talk’ about what my allergies meant for me and how serious they were they’ve gone from a degree of ignorance to fascination and we will be having an adrenaline injector demonstration soon with some old pens I’ve been hanging on to. We even have the orange standing by for its special fate.

Practise by injecting expired adrenaline autoinjector pens into an orange
Practise by injecting expired adrenaline autoinjector pens into an orange

And it’s actually OK that they cook with nuts. I make sure I’m not using the kitchen at the same time if they are, but I’m fine to be in the same room; my allergy to nuts it not air borne, thank goodness.

They are also very well house trained in the kitchen too; so all nuts are stored in sealed containers and hidden away and they all clean the kitchen thoroughly after they’ve cooked.

Me and nuts living alongside each other, who’d have thought it?

Good job really as peanut, spinach and kale soup with chickpeas is a speciality of the vegan housemate. I have to say, I am not even aware of the smell of nuts when he’s cooking, which usually does make me wary, like my body is just letting me know nuts are near and I need to be careful. I HATE the smell of peanuts too but I’ve hardly noticed it.

What do you do? Do you ban nuts from your living space? Would you only live in a shared house where no nuts were allowed? Because if you start thinking along those lines, do you ban the dairy, soya, wheat… Multiple life threatening allergies make things a little more complicated.

I think not. The world will always contain my particular potential assassins so I must find a way to live alongside them. But never ever trust them or let down my guard. Normal vigilance always applies.

The post Living in a house full of nuts appeared first on talkhealth Blog.

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Development of EoE Linked with Eczema, Asthma and Food Allergy – Allergic Living

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Allergic Living
Development of EoE Linked with Eczema, Asthma and Food Allergy
Allergic Living
Children with eczema, food allergy and asthma have a greater risk of developing eosinophilic esophagitis (EoE) than those without the conditions, according to a study presented at the AAAAI/WAO joint congress in early March. Dr. Jonathan Spergel and …

eczema – Google News

Development of EoE Linked with Eczema, Asthma and Food Allergy – Allergic Living

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Development of EoE Linked with Eczema, Asthma and Food Allergy
Allergic Living
Children with eczema, food allergy and asthma have a greater risk of developing eosinophilic esophagitis (EoE) than those without the conditions, according to a study presented at the AAAAI/WAO joint congress in early March. Dr. Jonathan Spergel and …

eczema – Google News

Development of EoE Linked with Eczema, Asthma and Food Allergy – Allergic Living

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Development of EoE Linked with Eczema, Asthma and Food Allergy
Allergic Living
Children with eczema, food allergy and asthma have a greater risk of developing eosinophilic esophagitis (EoE) than those without the conditions, according to a study presented at the AAAAI/WAO joint congress in early March. Dr. Jonathan Spergel and …

eczema – Google News

5 Inspiring Tips for Living with Eczema Based on the Power of Trust & Acceptance

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Another great post from itchylittleworld.com – Natural remedies for eczema to soothe your itchy little world..

This week, we’re sharing an inspirational video from my dear friend Marieke, a certified life coach and founder of Your Novel Life, whose own daughter had severe eczema as an infant. If you’re feeling particularly low or depressed due to living with eczema or dealing with your child’s eczema, then please watch this beautiful video. I’m sure you will find it’s message of trust and acceptance enriching for both your body and mind.

(begin transcript)

Hi everybody! I’m a life coach from Your Novel Life. I’m here today to share some tips with you about what I wish I knew then when I was handling my baby’s eczema before I became a life coach.

My daughter is now 7-years-old and she’s dairy intolerant. Our journey with her eczema started right as she was about 4 months old and I had noticed that her cradle cap started migrating to her face. She had small patches on her body but nothing too major. It was really when it started migrating to her face that I freaked out and I didn’t know what to do. I had never seen cradle cap like that. I started to think maybe it was eczema, so I started researching. And what I found was that it was probably really bad eczema.

Because I tend to go more of a natural route, I discovered that it was probably related to food, but I wasn’t really sure. So I visited my doctor with Fira (my daughter) and I described what was happening. My doctor actually told me that there is no conclusive evidence between eczema and food issues and I just felt that couldn’t be right, something seemed off. I’m a big believer that food is medicine. 

Here’s where my first tip comes in to play: trust your own gut and intuition. I consulted with some naturopaths that told me the biggest allergen I was consuming was dairy. When I eliminated it from my own and my daughter’s diet at six months of age, I noticed a difference in my daughter’s skin every two weeks (I was still breastfeeding at this time) and a change in my health as well. Her skin just started clearing up and by the time she was a year-old she was basically eczema-free. So, I trusted my gut and my gut was right.

One of the other ways we handled her painful eczema (she would just cry for hours from the pain and I could sense her internal frustration) was by soothing her with a pacifier. I had never been big on the pacifier before then, but for some reason I had one laying around during one particularly bad moment where I couldn’t settle her. I gave her the pacifier and she took it immediately. It’s like all her frustrations went out into the pacifier. She found an outlet for herself. She found a way to soothe herself. Nothing else had worked for us, so I trusted my gut, that the little plastic device would do something. I had tried everything to soothe her and I was at my wits end. So, that pacifier become her go-to self-soother very quickly. Even after her eczema was gone and she was a little bit older, she would still use the pacifier to calm herself.

So my first tip I want to share with you is: Trust your gut. Trust yourself that you know how to care for your child.

My next tip is acceptance. I know how hard it can be to accept that your baby has some kind skin condition or intestinal issue or allergy or intolerance, that they are living with eczema. I personally found that challenging. I also found the fact that I was going to have to give up cheese or cream in my coffee really, really scary. I didn’t feel like doing it. I felt like I had just going through pregnancy where I’d given up alcohol and I felt like I was just getting my body back and I just wanted to do whatever I wanted to do. But I realized that wasn’t going to happen when I discovered that the issue with my daughter’s eczema was dairy. So acceptance is my next tip I want to share with you, my lesson learned. Suffering stems from not accepting what is. At the time my daughter was suffering form eczema and I had this intuition that it was dairy and I didn’t want to accept that. But once I did decide to move forward with that, once I accepted it, MAN things got easier. So, that’s my tip, accept what is. Accept what you’re willing to do or not do (because not doing anything is okay too). 

Another tip I would suggest for anyone watching this video is to feel all the feelings. When I was dealing with my daughter’s eczema I had grief, frustration, resentment, fear and I struggled to come to terms with everything. It’s actually important to let yourself feel sad. Let yourself feel frustrated that your child has to be living with eczema, then move on. When we resist our feelings, things just persist. Give yourself the option to really understand your emotions. Write them in a journal. Without accepting our feelings, we just stay in the present and are not able to move on.

Feeling empowered and knowing that you can do something is also a great tip. Don’t think about it as I NEED or SHOULD cut out dairy, but instead as I WANT to cut dairy. I’m making this decision for my children and their future. Making your own decisions for you and your family is actually really powerful and I invite you to feel into the power while you navigate these waters. Find others living with eczema that can support you through this hard time and connect to a community that shares the same fears.  By creating a community and discussing issues with each other, we can inspire one another as well.

When I cut out dairy, I shared my daughter’s story with so many people because it ultimately changed her life and mine. Which leads me to my last tip. Accept everything as a blessing. Think about how changing your child’s life is a true blessing that you can pass onto your family or others you know. I’ve shared my story with our neighbors and other friends who have seen improvements in their own children’s health after cutting out dairy.

Bio: Marieke (last name) is a certified Martha Beck Life Coach. 

She focuses on providing life coaching for women with full and busy lives who want to learn how to slow down and take better care of themselves so they can feel lighter, more peaceful, and in charge of their lives. She is also founder of the site Your Novel Life that provides several workshops and inspiring resources.

5 Inspiring Tips for Living with Eczema Based on the Power of Trust & Acceptance appeared first on itchylittleworld.com. Come read more about natural remedies for eczema!

itchylittleworld.com

Living With Eczema and Psoriasis

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An increasing number of individuals are suffering with skin conditions such as eczema and psoriasis. What those who don’t suffer with it don’t realise is that skin conditions can be deeply frustrating and can strip you of your confidence. They can make you feel self-loathing and unhappy to venture out in fear of someone noticing your problem skin.

The Problem Can Start Anywhere

Those who live with skin conditions know that they can happen anywhere on the face or body. Common places for psoriasis and eczema is on the hands, feet and neck, although in truth you can quite easily start with them in a whole manner of places. Not only do they look unsightly but they also cause great pain due to the itching and burning sensation many sufferers feel.

Another area that many patients report skin conditions with is the scalp, where either eczema or psoriasis can take hold. Does your scalp feel particularly itchy? This could be an indication that it is more than just dandruff and actually the cause of a skin problem. This is a sensitive area and it can affect the hair follicles which in turn can cause some hair loss in a number of cases. Of course, although a skin condition isn’t as noticeable when it is on the scalp, the irritation one feels from it can be quite distressing.

Misunderstood

Eczema and psoriasis are still very much misunderstood in today’s society. People tend to generalise these two terms under the umbrella of “skin problems” but they both do in fact have their own characteristics which sets them apart a little. Psoriasis is generally very dry and scaly, whereas eczema can be quite moist. However, both have the ‘itch factor’.

Is There A Natural Alternative?

People tend to underestimate the problems skin conditions cause and living with eczema and psoriasis can affect your work life, school life and social life to such an extent that it can make for a miserable existence. Of course, skin problems can affect anyone of any age and some who start with it when they are young will go on to live with it for the rest of their lives. But is there a cure? Is there something that can be done? Well, with new products being launched all the time there is certainly hope for skin problem sufferers. There are special therapy soap bars on the market that are helping to relieve skin conditions in many individuals, and they are definitely worth trying.

Prescribed medication and ointments don’t seem to do the trick for many people, so that’s why there is a breath of fresh air in the natural healing market. The aforementioned soap bars are 100% natural and, most importantly, steroid free. By going to the doctors they will be sure to prescribe a steroid medication such as an ointment, but a steroid cream isn’t something you should be using for long periods of time. You need to try and find something that gently heals and soothes your skin back to its original condition.

Don’t let eczema and psoriasis ruin your life – try to find the natural alternative that can give you the confidence back that you deserve.

Author Mark Woodcock is a Webmaster of a wide variety of online specialty shops including a very popular site on Eczema and Psoriasis. Visit http://www.saponaqua.com/ today.