Thursday, September 16, 2010

30 Things About My Invisible Illness You May Not Know



This is a meme from the Invisible Illness Awareness Week website. I've filled out a separate one in regards to life with Endometriosis on my other blog The Endometriosis Diaries.



1.The illness I live with is: Effusive inflammatory polyarthritis/Rheumatoid arthritis, Fibromyalgia syndrome, Chronic Fatigue syndrome and Endometriosis

2. I was diagnosed with it in the year: 2007

3. But I had symptoms since: Endometriosis since 2004; arthritis, fibromyalgia and chronic fatigue since 2006

4. The biggest adjustment I've had to make is: adjusting to a new "normal" having to remember to take medications at certain times, being unable to study or work and live within the restrictions of pain and fatigue is really hard when you used to be healthy and energetic.

5. Most people assume: that because I look well, I must feel well

6. The hardest part about mornings are: the fatigue. Getting out of bed each morning is a huge challenge when all the medications that I'm on cause fatigue

7. My favourite medical tv show is: All Saints until it finished up. I was so devastated! They had a fibromyalgia patient on there once and it was a pretty accurate representation too which surprised me but I got a bit angry because they got to act and I have to live it for real every single day. I was going through an "it's not fair stage" when I saw that episode

8. A gadget I couldn't live without is: my laptop. Wouldn't be able to blog as much as I do without it

9. The hardest part about nights are: the pain. My pain gets worse at night time and trying to get comfortable enough to sleep is very difficult

10. Each day I take 32 pills and vitamins (no comments, please) and a weekly dose of methotrexate

11. Regarding alternative treatments I: am open but I prefer to do my own research and I always discuss it with my doctors first

12. If I had to choose between an invisible illness or visible I would choose: this depends on my mood and how frustrated I am with peoples ignorant and insensitive comments but as much as I hate having an invisible illness I would have to say I prefer invisible because although I may feel lousy, at least I look good and I am glad that I don't have everyone staring at me like I'm a freak because of a visible disability.


13. Regarding working and career: I am currently work disabled but I am in the process of setting up my own small craft business so I can work from home around the pain and side effects

14. People would be surprised to know: that I take a low dose chemo drug once a week for the treatment of rheumatoid arthritis

15. The hardest thing to accept about my new reality has been: missing out on so many precious moments with friends and family because I am too exhausted or sore, I'm missing out on the best years of my life but it just makes me appreciate and cherish the times when I am able to go out and have a good time so much more.

 
16. Something I never thought I could do with my illness that I did was: start two blogs!

17. The commercials about my illness: annoy me because they associate arthritis as be an old persons disease, young people and children have arthritis too!

18. Something I really miss doing since being diagnosed is: going for long runs

19. It was really hard to have to give up: studying Early Childhood Education- the career of my dreams

20. A new hobby I have taken up since my diagnosis is: blogging, scrapbooking, card making and nail art

21. If I could have one day of being normal I would: go for a long run on the beach

22. My illness has taught me: not to take anything for granted and not to worry about my life, to trust in God's plan

23. Want to know a secret? One thing people say that gets under my skin is: "you're looking well, are you feeling better?" Yes I look good, no I'm still sick- it's CHRONIC people!!

24. But I love it when people: say I can't imagine how difficult that must be. You are doing a great job. Is there anything I can do to help?"

25. My favourite motto, scripture, quote that gets me through tough times is: those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31

26. When someone is diagnosed I'd like to tell them: don't be too hard on yourself. Allow yourself to grieve your former self but remember that who you are goes way beyond what you can and cannot do. Try not to focus on what you are no longer able to do but what it is still possible for you to do.

27. Something that has surprised me about living with an illness is: just how many people judge you based on how you look

28. The nicest thing someone did for me when I wasn't feeling well was: send me an encouraging book with "thinking of you" written on the inside

29. I'm involved with invisible illness week because: I want to raise awareness about invisible diseases. Our pain may be invisible but we are not

30. The fact that you read this makes me feel: supported. The fact that you took time out to read this and care enough to be informed is appreciated- thank you!




Find out more about National Invisible Chronic Illness Awareness Week and the 5 day free virtual conference September 13-19, 2010 at http://www.invisibleillness.com/








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Wednesday, September 15, 2010

Me And My Invisibility Cloak

Harry Potter fanatics can understand the concept of an invisibility cloak. Pop on the magical garment and *boom* - you vanish. Living with an invisible illness is kind of like wearing an invisibility cloak in a sense. Once you get up, get dressed, brush your hair and put makeup on; you conceal the visible side to your profound pain and unrelenting fatigue. You hide the evidence of a sleepless night, the pale skin that's enough to send anybody running down the street screaming "attack of the zombies"; because when you're feeling anything but "normal" on the inside at least you can pass for "normal" on the outside. In this way having an "invisibility" cloak is kinda cool because if I looked like I felt- I would scare you and the real bonus is that I get to choose who I let see me without my "invisibility" cloak on- that way I am in control and I claim some power of which is sparse.

Some days though, wearing my "invisibility" cloak is a big fat pain in the ass, excuse the pun. Most days my pain is invisible, the pervasive overwhelming pain is hidden from the human eye; making it tougher to get support and difficult to describe the degree to which your life is debilitated. Living with concealed chronic pain often means that I feel misunderstood and "invisible", therefore I learn to act the part of being fine. When you suffer from pounding pain and extreme exhaustion- it feels anything but invisible, but to the normal visually orientated person influenced by society's belief that 'what you see is what you get' standing there dumbfounded when you recite your shopping list of symptoms- what choice do I have but to act fine? There are days that my "invisibility" cloak causes me nothing but hurt as people struggle to understand the severity of pain because it does not manifest outwardly. I hate having to pretend that I am fine or explain why I am not when I look like I am. I hate having to try and justify why I had to turn down an invite or cancel plans at the very last minute. I hate having to try and come up with a cool answer to "what do you do?" when I struggle to do anything while I am busy being sick. Managing side effects and just getting out of bed is enough to "do" and some days it is all you can do. I hate being glared at for not giving up my seat on a bus or train for someone who looks "sick", for I am apparently healthy to on-lookers when matter of fact I am just as debilitated, only it can't be seen. Forgive me for not standing a whole twenty minutes because I had cramps in my legs from fibromyalgia or because my joint pain was too unbearable or because I felt unwell from my weekly low dose of methotrexate- the chemo drug. Yes I did just say chemo, but no you can't see the fact that it was an absolute miracle that I even got on that bus.

If you saw me walking down the street you wouldn't know that I had arthritis, fibromyalgia or chronic fatigue and you would probably wonder why I don't work but when I am out I wear my "invisibility" cloak- you don't see the times when I run out of energy from simply blow drying my hair that I am forced to sit down right where I am on the bathroom floor. You don't see the times when I've sat on my bedroom floor in tears because I was too exhausted to do anything else after getting dressed and making my bed. When you see me, you see me on one of my better days- I don't leave the house when I am too exhausted. You don't see the days when my "invisibility" cloak lays untouched in the corner on the floor, you see me on a day when I am able to get up, get dressed, paint my cheeks with some rosy blush and stumble out the door wearing my "invisibility" cloak- the days that are truly miracles.


© Emily Ruth 2010




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Tuesday, September 14, 2010

The Reality Of Invisible Chronic Illness

For the last four years I have been living with persistent chronic pain. I live with the debilitating and painful symptoms of fibromyalgia, endometriosis, chronic fatigue and polyarthritis. I spend every day in chronic widespread pain. This is my reality and one that I have struggled to accept. I am not the only one who has had to face this reality of chronic pain. I, along with 1 in 5 Australians and millions world wide fight a constant struggle against aches, pains and chronic fatigue.

Having a chronic illness can disrupt your life in so many different and unimaginable ways- that is an undisputable fact. Managing one illness, let alone multiple, is a full time job. It is an enormous time consuming and energy draining exhausting task. Sometimes for me, my biggest achievement of the day simply lies in the fact that I managed to get out of bed and get dressed. Illness is an emotionally draining experience, having implications on a persons self esteem and their sense of belonging and feeling  productive within society.

Living with an invisible illness brings many challenges, one of the most major and destructive challenges being that of social isolation. For many, illness is isolating. Most are forced to withdraw from social contact because of inability to maintain employment, limitations in mobility and the need for extra rest. Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides. Feelings of despair, isolation, helplessness, lack of control and the fact that the disease cannot be cured is an everyday struggle which may lead to suicide. Does this not shock you? This is a sad reality and one which needs to be addressed but how do we change this statistic? Our society does not deal with disease well enough. Peoples inability to acknowledge hidden disabilities can lead to a feeling of isolation and the mention of a chronic illness can be terrifying to some people. I'm lucky to get a call every six months from my church to ask "hey, where are you?" and when I state my reasons for my lack of attendance I receive in reply "oh, ok then, bye" like it meant nothing to them. It makes me feel like I don't matter, that they only care about me if I am able to rock up to church events like "true" Christians do. Although they don't intentionally mean to come across that way, to a chronically ill person that's how it comes across and that too is a reality that needs to be addressed. I realised something though, most people are not equipped with knowledge when it comes to dealing with unseen pain, they are not expecting to hear " I feel terrible, everything hurts" when they see a perfectly healthy looking person standing before them. Chronic pain is a REAL reality though, so why are we not equipped to encourage the chronically ill?

There are many reasons for this. People often shy away because they don't know how to to offer help, they don't know what to say or they assume that because a person looks and appears fine, therefore they are. How can we change this? Knowledge is power. Knowing that we don't need to understand another persons pain to show them compassion and bring them comfort is vital. The simple act of a hug, a warm smile, a shoulder to cry on, a listening ear or a kind word is enough. If you are friends with a chronically ill person, mean it when you ask them how they are. Follow through when you tell them you'll have them around for dinner. Call them and share a laugh. It doesn't take much. Big hearts come in small packages. Care enough to be informed and if you don't know what to do a great resource that is available to help you is Lisa Copen's Beyond casseroles: 505 ways to encourage a chronically ill friend.

Many times I've had people say to me "you must have so much support" and yes, I do have some great support from family and friends at times- but I have much less than what people think and this is reality for many of those living in chronic pain. It seems that everyone just assumes that people who live with chronic conditions are showered with support when in reality they are receiving much less than what people perceive to be the case. Yes, on a good day (these are very rare) I many hang out with friends and have a good time but at the end of the day I go home and I am forced to face my unwanted reality- the reality that I am no longer the person I used to be; I now live a restricted life full of limitations, the reality that as much as I wish it were not so, I will wake up with pain the next morning. I am left alone with my thoughts. I don't want to be alone but sometimes it is necessary; there is no one that I call when I'm upset- who wants to hear you crying hysterically because you ache all over, no one wants to hear about pain. What happy and healthy twenty two year old can appreciate what I am going through? Everyone is sick and tired of hearing about how much I ache or how tired I feel, even I am!

Living in chronic pain can be incredibly lonely at times. Comments like "but you look great" or "you'll feel better if you do things and just get out more" lead to feelings of isolation and the belief that no one understands. In an e-book resource chronic illness tips- 263 ways to do more than just get by, Lisa Copen shares "if one more person tells me to go have a cup of tea- I am going to scream! Tea is not going to help, people! I am tired of tea! My illness is bigger than tea! Don't you get it?" the reality is most people don't. I've lost count of how many times I've been asked "are you feeling better?" and I feel like screaming "what part of CHRONIC don't you understand?". The reality is that my pain as much as I would like it to, isn't going to disappear over night. A magical genie isn't going to pop out of a bottle and grant me my wish of a life without pain and *poof* I'm all better. It is a constant pain- 24 hours a day, 7 days a week, 365 days a year, and most people cannot relate to being in pain all the time- that is reality.

The true reality though, is that I am not alone in my daily struggle with pain and isolation. I go to sleep knowing that even though I may feel alone, there are millions world wide who are crying themselves to sleep too because of fear that they are disappearing without anyone noticing; there are people who care and there are people who share my reality of invisible chronic illness and the one thing that unites us all- our invisible pain leads us to visible hope.

© Emily Ruth 2010


Sources:


Australian Institute of Health and Wellfare Australian General Practice Statistics and Classification Centre. 2005-2006

Resources:

Lisa Copen's chronic illness tips- 263 ways to do more than just get by is a free e-book available to download when you sign up for daily updates. Visit www.invisibleillness.com

Lisa Copen's book, beyond casseroles: 505 ways to encourage a chronically ill friend can be purchased at http://chronicillnessbooks.com/index.php?cPath=29





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Monday, September 13, 2010

Invisible Illness Facts and Figures



Kicking off invisible illness awareness week with some surprising statistics and facts! These are the ones that stood out most to me:




General statistics
  • People with illness are young! 60% are between the ages of 18 and 64 (a)
  • The divorce rate among the chronically ill is over 75% (a)
  • Depression is 15-20% higher for the chronically ill than for the average person (a)
  • Sadly, various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides and more than 50% of these suicidal patients were under 35 years of age (a)


American statistics


  • Nearly 1 in 2 people have a chronic condition (a)
  • Approximately 96% of people who live with an illness have an illness that is invisible. These people do not use a cane or any assistive device and may look perfectly healthy (a)



Australian statistics

  • In 2006-2007, arthritis, diabetes and depression were chronic conditions commonly managed at GP consultations (b)
  • In 2004-2005 people with chronic disease were less likely to be employed full time, and more likely to be unemployed, than those without chronic disease (Australia and New Zealand Health Policy)
  • About 1 in 5 Australians suffer from chronic pain (Australian Institute of Health and Wellfare Australian General Practice Statistics and Classification Centre. 2005-2006)


The facts
  • Invisible illness includes autism, bulimia, migraine pain, arthritis, bi-polar disorder and depression (a)
  • The significance of ones faith has shown to help one handle a stressful medical event better (a)
  • Over half of the chronically ill say the worst thing someone can say is "you look great" (a)

  • "Chronic pain can't simply be fixed by taking a pill"- Professor Stephen Gibson, President of the Australian pain society (c)
  • "Because pain often shows no physical signs, people including health professionals will often not believe sufferers are in pain which is one of the reasons they are at such high risk of depression, anxiety, social isolation and relationship breakdown"- Coralie Wales, President of Chronic Pain Australia (c)

Sources:

(a) http://www.invisibleillnessweek.com/2009/05/06/statistics-chronic-illness/
(b) http://www.aihw.gov.au
(c)http://www.mbf.com.au/AboutMBF/mediareleases/national-pain-strategy.html





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Sunday, September 12, 2010

Each One Can Reach One



This coming week everyone has the opportunity to change a life with just a note. Everyone has the ability to reach out to someone living with invisible chronic pain.

During the week of September 13-19 get involved in national invisible chronic illness awareness week. It's simple, all you need to do is grab a sticky note, a pen and some creativity and you are set to go!

This year it's all about anonymously encouraging people through the simple act of leaving a note some place where it can be found by another.

Here is Lisa, founder of national invisible chronic illness awareness week talking about the campaign


I will admit that at first I thought it was a little silly, what if the wrong person found it? Then I thought who am I to underestimate the power of an encouraging note. Think about it- how amazing would it be if the right person at the right time found the note that you left and it was exactly what they needed to hear or because of the note you left- instead of spending the day in tears someone was able to smile. I am humbled to think that God could use my small note to touch someone, to change a life with just a note. I know that if I came across a note I would be greatly encouraged. Even if the person who reads the note doesn't have a chronic illness, they may know someone who does or they may be suffering from depression, anxiety or are just finding life difficult- invisibleillness.com has resources to help.

Can one person make a difference? Click HERE to read the story behind the notes.

By leaving a message on a sticky note somewhere with invisibleillness.com written at the bottom, the person who discovers the note can visit the website and click on the find a note tab which explains why they found the note and provides a heap of free resources offering advice, tips, encouragement and hope.

So where can YOU leave a note?

Anywhere really, so long as it can be found and read by another. Here are some ideas to get you thinking:
  • on a bus seat
  • in a coffee shop
  • at your university
  • at your workplace
  • on the back of a toilet door
  • on the mirror in the changing rooms
  • inside a magazine in the waiting room at the doctors
Get creative! If you've got some more ideas leave a comment on this post so other people can be inspired. Personally, I love the example at invisibleillness.com of a note on a box of epsom salts. Whoever thought of that is a genius! I'm totally going to do that this week! Many people with chronic pain purchase epsom salts, myself included. Don't forget if possible to take a photo of your note and where you left it and upload it to the website or alternatively I could put together a post if enough people email me through there photos and where they left them.



What to write on your note?

  • Are you in pain? You are not alone
  • You may be suffering from invisible pain but you are visible
  • If you live with chronic pain you are not alone
  • If you are wondering if anyone cares, someone does!
  • If your body is in pain you are not alone. Nearly half the population has a chronic condition. Find a friend.



For more information visit www.invisibleillness.com


I encourage you to spread hope to the hurting. You never know who your notes may touch. Each one can reach one but I am going for more, are you?




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Saturday, September 11, 2010

Broken Heart, Broken Hope



In December 2009 my rheumatologist informed me that my fibromyalgia was in remission. I was both elated and shocked, although, apart of me questioned her judgement because I was still in pain. Having been diagnosed with both fibromyalgia and polyarthritis back in early 2007, I lived with constant muscle pain caused by fibromyalgia and painful joints as a result of arthritis. Fibromyalgia is constant widespread pain predominately in the muscles, ligaments and tendons and as I was experiencing hardly any pain in my muscles and clinically showed signs of improvement with a lack of trigger/pressure/tender points upon examination, fibromyalgia was no longer a concern. I stopped medication as advised by my rheumatologist and the pain I was still experiencing was put down to polyarthritis, which my rheumatologist continued to treat me for. Fibromyalgia isn't something that you recover from immediately and you can't click your fingers and return to your former lifestyle or you risk a total relapse, so I knew healing was going to be a long process. Fibromyalgia is a baffling condition that has no cure so I knew I was blessed to be in remission. The cause of fibromyalgia is unknown but in my case, arthritis caused it. I was told by my rheumatologist that because my fibromyalgia was in remission, the type of arthritis I had would likely go into remission too, only it was a matter of when.


After fighting and accepting fibromyalgia as apart of my life for three years I had to make extremely difficult emotional adjustments now that it was in remission- fibromyalgia no longer ruled my life and no longer would it dictate what I could or couldn't do. Fibromyalgia was history, it no longer had a hold on my life and with the hope and faith that my joint pain would also fade into the past, I was ready to get on with my life. I started making plans, I started dreaming again. I woke up every morning with the hope that one day soon I would be able to wake up and continue living my old life. I went to sleep with the hope that one morning I would wake up with no pain. This week that hope was shattered.

I saw a different rheumatologist while mine was away who gave me a very different opinion indeed. He confirmed that it is highly likely that I have rheumatoid arthritis, I wouldn't be taking medications used in the treatment of rheumatoid arthritis if they were not convinced that it was what I have, but what he also said shocked me. He said that I still have fibromyalgia. It never left. At first I thought he was a complete moron who had no idea what he was talking about but as he explained why I began to understand and somewhat agree with him. He stated that rheumatoid arthritis only accounts for 5% of my pain, there is no doubt about that but the other 95% is fibromyalgia pain amplifying the joint pain. The predinsolone trial as I suspected should have worked and the reason why I am not responding is because of the fibromyalgia pain. The condition involves hypersensitivity in the nervous system that amplifies pain (I'll explain more about this later). Therefore I am feeling more pain than what I should be. As I'm only showing early signs of rheumatoid arthritis with no signs of swollen joints, it doesn't explain why I am so disabled by it, and I totally agree. I should be able to manage work, so it is the fibromyalgia that is causing strife. As my arthritis isn't bad enough it doesn't warrant stronger drugs. What I don't get though is how do I still have fibromyalgia if it is not affecting my muscles as much? According to the rheumy that I saw the other day, my fibromyalgia has moved from my muscles into my joints. I'm devastated. I got my hopes up thinking that I would get stronger drugs that would help me to live a better life and here I am being told that my fibromyalgia never left. If it was just arthritis that I had, it could be treated but fibromyalgia is very difficult to treat. I was advised to go back on treatment for fibromyalgia which makes me feel miserable and fatigued and basically told to live with and find alternative ways of coping with the pain. It does make sense that if my arthritis is causing fibromyalgia that I would still have it. According to suspected causes for fibromyalgia, rheumatoid arthritis is one of them. It is very common for them to go hand in hand.

What I am finding incredibly hard to understand is why my first trial of prednisolone a few years ago worked brilliantly and as I thought about it I realised that I had fibromyalgia back then and the medication I was on helped managed the pain to an extent, therefore I noticed the improvement in my joint pain as I wasn't distracted by the fibromyalgia pain. Are you confused yet?! Welcome to my world! So now I am wondering if I get the fibromyalgia pain to a manageable level and tried the prednisolone again would my rheumatologist give me the stronger drugs like she said she would like too? My next appointment is going to be an exciting one. Two rheumatologist's discussing (that's a polite way of putting it, lets use 'fighting' I like that visual much more) how I should actually be treated and what my diagnosis/prognosis is.

So here I am with pain that can't be fixed, feeling hopeless and choking back tears. I've gone from being told that my fibromyalgia is in remission and that my arthritis should hopefully go away to being told that I more than likely have rheumatoid arthritis and have had it for the past four years to then being told I have always had fibromyalgia. This is all too much for my twenty two year old brain. I'm a mess. I am fighting a monster that no one seems to know much about, I can't seem to get clear answers and everyone has a different opinion on treating it. I'm confused, frustrated and upset. I don't want to play this game anymore. I don't want to ride this roller coaster, I want to get off. I have so many questions I don't even know where to begin. Why would my rheumatologist tell me my fibromyalgia was in remission when it isn't? Why would she talk to me about getting stronger drugs when I don't even qualify for them? Why would she tell me that she would love to give me the better drugs if I don't need them? I don't even know what to feel anymore. Numb is what I feel. Is this some joke? I feel like all the doctors have done is mess with my head and my emotions. All they've done is give me false hope. I chose to believe that I was getting better, I trusted in my rheumatologists ability and now I'm at the point where I don't even know who the hell to believe anymore. I'm considering a third opinion, but would that do any good? It would probably cause more confusion and I don't need anymore, I can't take anymore. I'm tired- I'm tired of trying drugs, tired of going around in circles. Where has all this got me? No where. I'm back right at the beginning with no stronger drugs, facing uncertainty and constant pain. I'm angry. Part of me wishes I hadn't seen a different rheumatologist, but I also want to know the truth and if this is the truth, it really hurts. I'm heartbroken. My hope has been broken into a million pieces on the floor and right now I am trying to pick them up and put them back together. This is NOT a hopeless situation. I REFUSE to believe that.


Friday, September 10, 2010

I'm Blogging For Invisible Illness Awareness Week 2010!



National Invisible Chronic Illness Awareness Week- September 13-19



National Invisible Chronic Illness Awareness Week is next week! I've just signed up at bloggers unite to blog for the cause for the very first time! I am really looking forward to next week and I've been hard at work on some great posts. I can't wait to share them with you next week!

What is invisible illness awareness week all about?

National Invisible Chronic Illness awareness week is sponsored by Rest Ministries which is the largest Christian organisation that specifically serves those with chronic pain. Rest Ministries was established in 1997 and is founded by Lisa Copen, author of nine books including Beyond Casseroles: 505 Ways To Encourage A Chronically Ill Friend and Why Can't I Make People Understand? Lisa lives with both rheumatoid arthritis and fibromyalgia, and is personally a woman who I greatly admire. Her books and articles featured on invisibleillness.com have been a great comfort and a source of hope, encouragement and inspiration to me over the past four years.

The week was founded in 2002 and is aimed at reminding people that they are not alone in their pain and is about raising awareness of the staggering statistic that 96% of illnesses are invisible. It is a time to increase awareness that about 1 in 2 people have a chronic illness, most of which are invisible. The week is held annually in September. The highlight of the week is the free 5 day virtual conference which features four speakers a day talking on a range of topics in relation to dealing, coping, and managing chronic illness so that you can be encouraged that chronic pain doesn't have to define who you are.

The 2010 campaign

This years theme is 'everyone can reach one' which involves leaving encouraging anonymous notes in public places or somewhere where it can be found and read by another inviting them to check out-
invisibleillness.com. Thousands of people around the world are getting involved in this important week by leaving encouraging sticky notes in hope of reminding people that they are not alone in their pain, that there are people who care and more importantly that there is VISIBLE hope.

I will post more details on how YOU can get involved in the 'everyone can reach one' campaign in a separate upcoming post so be sure to watch out for it.


5 ways how YOU can get involved in invisible illness awareness week

Donate- this will help Rest Ministries to cover expenses of resources and enable them to encourage more people. You can donate online at invisibleillness.com

Read- check out some of the bloggers blogging about the week at bloggers unite

Participate in the campaign- spread the sticky note love by reaching out to someone living with invisible chronic pain. Change one life with just a note! You don't have to have a chronic illness to get involved.


Got facebook or twitter?


  • Tweet or post a status during invisible illness awareness week stating about the week and posting a link to the website to raise awareness. For example you could post " I support invisible illness awareness week 2010, sept 13-19. If you are in pain you are not alone. Find visible hope. Check out www.invisibleillness.com ."

  • Join the NICIAW fan page on facebook, its a simple way to create awareness and support the cause

Please support me and many others by spreading awareness during this week. Your love and support is highly valued and appreciated,




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Wednesday, September 8, 2010

Rumours Of Rheumatoid



A continuation from the post My MRI


I lost count of how many times my rheumatologist mentioned 'rheumatoid' during my last visit. I was expecting to have another MRI scan scheduled for next month to confirm that suspected joint erosion in my left hand but seeing as the cause for my recent weight loss has been put down to rheumatoid arthritis, my rheumy decided that I would no longer be needing a repeat scan after all (well for now anyway!), phew! Boy am I happy about that! I was not looking forward to another painful MRI.

After the torture of having my joints poked, prodded, twisted and squeezed in every possible way she exclaimed "we are making progress, this is exciting!" By 'progress' she didn't mean 'your joints are improving, things are looking up';she meant that I was now just one step away from being diagnosed with a life changing, debilitating disease. In my head I was thinking "Exciting? Yeah for you maybe!" Sure it must feel great to be able to finally diagnose a patients pain after four years of uncertainty, and yes, I am relieved to finally be facing a set in stone diagnosis- a name for my pain, but exciting? Seriously. She also expressed how much she would love to give me the stronger drugs as she believes that I would do really well on them. All I could think was well hurry up and give them to me woman before I hold you at knife point, I'm in pain! I am a woman of patience, really, I am.

In order for me to qualify for stronger drugs I have to "tick all the boxes". According to my rheumatologist "you can't cut corners when it comes to confirming a diagnosis and stronger drugs require a legally binding signature which states that patients have ticked all the boxes and have met all the medical requirements"

As a result of my recent unsuccessful trial of Lyrica (I don't think I mentioned it before but that drug failed to give the results both my rheumy and I were wanting), the weight loss and an increase in pain and fatigue, my rheumy thought  it necessary for another trial of prednisolone at a lower dosage. I assumed that how well this trial worked (or didn't) has something to do with confirming rheumatoid arthritis (she didn't mention specifics) although, I didn't fully understand why this trial was necessary. I was hesitant to ask  because she tends to make me more confused. Why doctors always have a habit of turning simple answers into complex ones I will never know. I left that appointment with my head spinning and this is exactly the reason why I write so many posts like this- to try and make sense of it all.

In my confused state I began investigating on the internet and I discovered that prednisolone is the most commonly prescribed steroid tablet used in the short term treatment for those with rheumatic diseases. It is especially used during sudden flare-ups of rheumatoid arthritis and is used during the early stages of the disease to help slow down disease progression. I also learnt that it is used as  a complementary drug used to work alongside both non-steroidal anti-inflammatory drugs (NSAIDS) and disease modifying anti-rheumatic drugs (DSMARDS) which are the drugs that I have been on for over the past three years. In my research I noted too that prednisolone is often combined with these drugs at a low dosage to help bring immediate relief.



Okay, so now it makes more sense to me. If prednisolone brings me relief it confirms rheumatoid arthritis, but the confusing thing now is that the trial didn't work. After seeing no improvement I'm left with joint pain worse than ever before. So much so that the pain in my knees is making walking incredibly painful at times. The pain at night has become ridiculous, it's a living nightmare (betcha liked how I snuck that one in huh?). I can feel my joints changing, they feel different to move. They no longer feel 'normal' and they make a horrible cracking and sound when I move them suddenly at times. They have never done that before. Things are changing and I don't like it. I'm stressed, I'm frustrated, I'm tired, grumpy and I'm in PAIN.

I have so many unanswered questions. Why didn't the prednisolone work? Did I maybe just need a higher dose or is the joint pain too bad that it isn't responding and is in need of the stronger drugs? These are all questions that I am hoping to have answered at my appointment this week. Although, I'm a little worried as my rheumatologist is away and I'll be seeing a male rheumatologist who is seeing her patients while she is away. I'm in the worst flare-up ever and I have to see a new rheumatologist who has only been briefly informed of my four year history. This is going to be interesting. When I spoke to my rheumatologist on the phone last week, she said that this weeks appointment will prove interesting at this point in time to gain a different perspective on things and have more insight on the best way to proceed.

So everything is still up in the air and I am tired of the familiar feeling. I just wish they would hurry up and give me the damn drugs. I feel as though my days now are just spent surviving and I don't want that for my life. I want to be able to thrive.









image via google

Monday, September 6, 2010

My MRI

For the last four years my joint pain has been labelled with the name polyarthritis. All blood tests and scan results have come back negative. I was diagnosed with non-effusive inflammatory polyarthritis. This basically means that my joint pain is a result of inflammation in my body of which the source is unidentifiable. Non-effusive means that there is no evidence of joint erosion's (damage) or fluid build up. Little did I know that this would all change.

When I was diagnosed my rheumatologist (okay, from now on I am using rheumy when possible because it is just too long!) said that it was a matter of a waiting game, trialing different drugs and keeping an eye out for elevated blood tests to see what path the joint pain would take. Although I have joint pain in every joint apart from my hip, earlier this year I noticed that the pain in my hands was becoming more of a concern. Daily things that are so often taken for granted such as opening and holding things, shampooing my hair or washing my face have gradually become a painful and some days impossible mission. Overall I have also noticed a drastic increase in my joint pain and joint stiffness and mobility are progressively becoming worse.

In the last few months I have been waking up to puffy and red joints, especially affecting my middle and little fingers. The camera doesn't capture it that well but you get the picture.





Aside from the occasional puffiness, my hands appear 'normal'. The sharp pangs of pain aren't visible on the outside and often I have wondered what is happening on the inside. In May of this year I found out. I tested positive for rheumatoid factor and MRI results proved my pain! My pain is REAL.

MRI scans revealed inflammation in both my wrists and fingers as well as fluid build up in my wrists and a possible joint erosion in my left hand. Yikes! Here is what inflammation looks like.....




It's all the white stuff in my finger and wrist joints just in case it isn't obvious. So that is what my hand looks like on the inside. Pretty.

In the written report the radiographers questioned if I had ever injured my left hand and no, I have never injured or broken anything in my life so in light of this my rheumy suspects that I have a joint erosion as a result of the arthritis. It sounds kind of scary to think that I have a joint erosion in my early twenties! So what does this mean? Probably rheumatoid arthritis. For me to be officially diagnosed and therefore qualify for stronger drugs, I have to have confirmation of a joint erosion and as scan results were not able to clearly indicate this, repeat scans next month are in order. My rheumy informed me that joint erosion's take years to form and therefore years to show up on scans and mine is just starting to show so next month it should be confirmed.

After years of misinformed medical professionals telling me that I had a 'nothing' type of arthritis, my rheumatologist states that I have a serious type of arthritis. So what is my given diagnosis at present? Effusive inflammatory polyarthritis/suspected rheumatoid arthritis.

At a recent visit to my rheumatologist we discussed my sudden weight loss. All necessary tests have come back negative so only one cause for my weight loss remains. Rheumatoid arthritis. In light of this my rheumatologist thinks that I just may not need a repeat MRI scan after all....................


to be continued....




Saturday, September 4, 2010

Things To Come



I have some exciting plans and new things for this blog which I will be introducing over the next few months and into the new year. My goodness has this year flown by! I'm thinking of christmas shopping already! Okay where was I, back to blog plans. I've posted before on how I want to take this blog in a new direction and I've come up with some pretty exciting ideas that I just have to share them with you! After all, these changes effect you the reader also.

BUT, before I go off on a tangent and end up discussing how....yeah I don't really know where I was going with that, so anyway, I wish to inform you that my other blog The Endometriosis Diaries is back up and running. YAY! So head on over there and check it out. Be sure to let me know what you think.

Moving on, we have Invisible Illness Awareness Week coming up on the 13-19 of September, which I will be blogging for of course. This is my first time EVER to participate as a blogger and I am so excited! I can't wait! The thing I love about this week is that you don't have to be a blogger to get involved and although I'll be blogging for the cause throughout the week, it is something you as readers can be apart of too. This years campaign is 'everyone can reach one', so next week in preparation, I'll dedicate a few informative posts about the campaign and how YOU can help reach out to one person living with invisible chronic pain.

World Arthritis Day is getting closer too, less than two months to go! It's on the 12th of October and I will also be joining this campaign to help raise awareness of arthritis in all its forms.

Okay, back to the blog news. I've been doing a huge amount of thinking about this blog and I have decided that drastic change is definitely in order. I've come up with so many ideas (my head is about to explode) and here is what I have come up with:


  • New website. Yes, this means a brand new design to complement my other blog.
  • Switching to a custom domain. This means that I will have a registered domain name, so instead of the web address being the title.blogspot.com it will just be the title.com or something like that. Pretty cool, huh?
  • New blog name. Yes, I am changing the name to a much shorter one. Don't worry, I'm still sticking with the same theme but the new name works much better with the new site. You'll see.
  • Blog logo. I have the design ready to go and it looks pretty cool if I do say so myself.
  • Blog merchandise. Now you probably think I'm crazy, but a girl can dream can't she? I'm seriously considering creating blog merchandise but this will be like way, way down the track. I have some really great ideas which have been inspired by some pretty awesome blogs. So, you may be thinking that I really need to get a life outside of blogging but right now blogging makes me happy and it is getting me through the tough times, so blogging is what I'll do. Simple. You have to wait and see my blog logo to understand exactly what I am talking about and see just how cute the merchandise will look. I can't wait to show you!
So, what blog topics are coming up? I hope to do some posts on inflammation, acne, vitamin D and dealing with and managing flare-ups. I also hope to do a series, focusing on all things chronic illness related. What life is like with a chronic illness, coping tips, how to encourage the chronically ill and stuff like that. I also intend on making a whole bunch of non medical related topics a permanent part of this blog too. So yeah that is where we are heading and I've just realised that I say 'so' a lot, although who doesn't?! It's funny what writing can reveal to you, so.........be excited! I am! I bet you like how I linked that one in. Yeah you did.

I also still have that exciting news to tell you, but I'll keep you hanging for a little longer. Ha! So, (there is that word again) busy and exciting times ahead. Looking forward to sharing them with you!


Thanks for reading,

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image via google
 

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