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Red Tape

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It has been a long while since I have been here. But my circumstances have changed and to write anything more than a few words is extremely difficult. I find if I have written a lengthy message to someone that right as I am about to send it I drop my phone or tablet and all my hard efforts is wiped. After that, it’s just too hard to start again.

I am trying to be good and use the voice recognition that both of my Samsung phone and tablet have. Again it throws in the odd bizarre word and you still have to go back and put in full stops so the reader has some clue of what you are talking about. I have always been a super fast typer. I think at one point I was around 130 words per minute so it is equally frustrating that when you do want to say something it takes forever. Today I have decided to crank up my Jurassic computer and just start writing a few lines here and there and saving it before I publish. Let me just Kick Start this poor old clunker 

At the beginning of August I had a stumble tripping over some boxes in the garage. As I started to fall I grabbed an over door clothes hanger with my bad hand and my good hand smacked into the rear glass of my parked car. Most of my weight somehow hung on the clothes rail. I was really very surprised that my bad hand really didn’t feel too bad. My right hand was a little sore from hitting the glass of my car but really things could have been a lot worse.

Strangely enough 3 days later my right arm (which was my good arm) came on over a few hours to excruciating pain and my elbow locked in the straight position. Any slight movement became agony and I just couldn’t get comfortable anyway. This extreme pain stayed with me for a number of weeks. I did have a GP come to the house at Day 3 and pronounced that I he believed my crps had spread. The back of my shoulder was sweating profusely and the rest of my arm was purple and freezing cold. He said that I will wait around 3 weeks and see what function I am left with after it settled down. The first month was terrible. Having one hand with full blown crps and no strength and an arm that would not bend meant that I couldn’t do anything. No arms. I couldn’t get to the toilet in time and couldn’t wear anything but 1 dress in which someone would have to thread these broken arms through with fine precision without causing more hell pain. I couldn’t be left alone, I couldn’t even pick up my phone and ring emergency with the arm function that I had. I couldn’t open a door and leave the house if it was on fire. The first day I struggled through on my own but after that, someone had to be here with me.

At this point I rang my care company that shower me 5 days a week begging for extra services, I needed someone to come to shower me on Saturdays and Sundays as hygiene had become a huge issue when no arms work enough complete many many tasks. I was told that I had used the maximum hours that were available to me and the best she could do was to fill out some paperwork and try and get the ball rolling for short/emergency care. Within 2 weeks I was able to have 2 carers come a day but this only last for 2 weeks. The afternoon person would come, change my clothes and make dinner for us. Those 2 weeks we ate like kings it was fantastic. Another company was coming in for 6 weeks to shower me on the weekend. Phone call after phone call desperate to get help quickly and regardless of how bad your situation is…it won’t make the government departments move any faster. I had to apply to disabilities for ongoing extra services and now 13 weeks later my urgent case still sits on the managers desk. They had been waiting to ask the lady that interviewed me some more questions about me and she had been on annual leave for 2 weeks. For the record she has been back for a week and still nothing has happened. That was the end of me. I had kept it together for 12 weeks thanking my lucky stars that it could have been worse. But after this long there is a point when it is just completely infuriating.

Somewhere in the many many people I have spoken to I was in touch with a government department that look after young carers…which means they help my 16 year old son in many different ways. It’s trying to ease the burden on these kids so they can finish school to their highest ability. This beautiful young lady is now making these calls on my behalf and doing her very best to try and get my weekend showers returned for until I go through another round of interviews with another department. The biggest issue seems to be that I am under 65 and this is where urgent emergency help is impossible to access. The biggest problem in my life is that I don’t have a partner. He would have to be in charge of showering me and changing my clothes. Being under 65 with no partner is impossible. It all comes down to funding. The organisation that has been showering me on the weekend charges $98 for 2 hours weekend care. It all comes down to a word called funding. If you are over 65 I think this falls into the federal governments budget and under 65 the states budget. After jumping through hoops for this extra care, it may be granted and it may be well out of what I can afford or I may find it impossible to find one of the care companies that still have enough funding left to take me on. My frustration lies in that if I am struggling with hygiene issues is it actually humane to leave someone in this position for 13 weeks plus. I hope that once this is up and running I still have enough puff left to contact the Health Ombudsmen and relay this ridiculous system. I can’t be the only single parent in this situation.

Anyways we wait…and we wait….

Struggle Street

struggle street

It’s really tough going at the moment, more disappointments and the feeling of being so terribly disconnected from everyone. I feel so very alone. As new symptoms arise I’m so very scared not wanting to put a lot of effort into thinking about it because I feel I could just “Freak Out” in a way that I can’t contain.

It’s always been about stuffing these feelings down low, with the amount of time I have on my hands all day strangely enough I don’t think about this monster much….I just keep stuffing it down down and then one day the lid comes off and I explode in the most inappropriate way.

I have decided that this year my visits with the Psych will be to try and deal with this illness in a different way – meeting it head on. I am absolutely scared shitless but I have to try something different. At this point of my life 2 and a half years in with CRPS I just cannot imagine ever being “OK” with it. I know other sufferers say the first couple of years were the hardest for them – mentally. No part of this is ok, no part of this do I feel in control, managing the day in day out excruciating pain. I do not feel strong or dealing with it well…I feel as if I am drowning…my head making it to the surface for a gasp of air as I continue to flail my arms for help.

The extreme heat is causing more extreme heat in me. My arm is a bonfire with my face not much different….the pain screams all day…in a lot of cases I can’t hear people talking over it…just screams, you can’t focus or concentrate. Taking too many painkillers and I try regularly to try and come down but at this point I can’t manage without them and this causes of course another problem – along with mobility and severe weight issues and why your insides are just not working how they were designed to.

After leaving it for months, I finally wrote my complaint letter to the hospital about the doctor I have been seeing. My last appointment I was assured of another opinion as I have been seeking for years. The doctor I have been seeing – it’s been a nightmare, I don’t know what I did to get on the wrong side of her but every visit is the same hostility, ignorance, aggression. I finally had been lead to believe that I would be have to see her just one more time and then I could see the professor. During the appointment she told me that she didn’t believe that I had CRPS, maybe once but not now (even though the pain gets worse and so do my symptoms – other doctors in this department believe I have CRPS). She believed there was nothing she could do for me as she believed that I had a little bit of arthritis and needed a psychiatric evaluation. After I left the appointment I did my usual ritual bursting into the toilets downstairs and crying my eyes out. My phone rings about 10 minutes after. It is the doctor. She has spoken to the professor and even though the professor has never laid eyes on me she agrees with the female doctor and I would not be getting a second opinion as they have already discussed this (without me being present)

I just cannot fathom how difficult it is for me to see another doctor. One time I had actually been giving a new appointment time with another doctor then someone that I didn’t know rang me back a week later and said that the appointment would not be going ahead.

This morning I was talking with the patient liason officer about my case. It appeared that she could argue my case but in the end it is the professor that makes the final decision and again it’s not looking good. For once I felt that I articulated myself better and not blubbering about it. I thought it was every patients right for a second opinion. If the doctor I have been seeing has been writing in my file things that are just not true…getting much better…very distressed about getting some treatment…how do I get a fair assessment if no one else has actually looked at my arm? I just received a phone call from the pain clinic booking me an appointment next Wednesday with another doctor. I hold my breath…this has happened before.

“Everyday may not be good but there is something good in every day”

Quote

June 2013

 

gina birthday

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How to Look and Feel Beautiful with an Autoimmune Disease

r-AUTOIMMUNE-DISEASE-BEAUTY-large570

Thought you might get something out of this article. I know for me it as I have blogged before “It’s all about the Earrings” If I am not wearing my dangly earrings…it is “definitely not a good day”

http://www.huffingtonpost.com/2011/11/28/autoimmune-disease-beauty_n_1115449.html

By Angelica Catalano for YouBeauty.com

“But — you look so good!” your friend says with a confused look, after hearing that you’re sick.

One of the ironies of certain illnesses is that even when you’re feeling cruddy, you can appear just fine. But imagine that you didn’t feel your best most of the time … would you still try to look it?

For those who suffer from autoimmune diseases, looking good means masking a civil war going on inside: Your immune system attacks healthy cells in your body as if they were enemies. Over time, tissues become inflamed and cause pain in the war zone, which differs based on the affliction. In the case of Rheumatoid Arthritis (RA) the battle zone is your joints; your intestines with Crohn’s Disease and for Multiple Scleroris, the brain and spinal cord.

There are more than 80 types of autoimmune diseases, some of which may have genetic components. The environment can also make things worse by prolonging or exacerbating symptoms. For example, stress and infections can kick up symptoms by activating genes that trigger an autoimmune response.

While some people experience chronic, debilitating symptoms, others have the occasional flareup. It’s unpredictable, and it takes effort to maintain a strong sense of personal style and inner beauty.

“You could feel fabulous today and horrible tomorrow,” YouBeauty reader Jane says about RA. When a bad day strikes, she’ll stay in bed. But most of the time, she puts her best face forward, even if she’s swollen and in pain. “I make a point of looking my the best,” she says. “I always feel better when I put on my red lipstick.”

Integrative Health Expert Jim Nicolai, M.D. agrees — you could lift your spirits with something as small as finding a really good set of cosmetics. “If there’s something you feel really good about and it makes you feel good, I promote it as a health strategy,” Dr. Nicolai says about working with patients at the Dr. Andrew Weil Integrative Wellness Program at the Miraval Spa in Tuscon, Arizona.

Jane has been cultivating her style for years, looking polished even during the early hours of preschool drop-off. “It’s just a trick. I put sunglasses on, a pair of gold hoops and a long trenchcoat on top of my pajamas,” Jane would tell mothers who asked how she always looked so put together.

She’s stayed true to her style through her RA diagnosis, sometimes looking so good that people don’t understand she isn’t feeling well. She attributes it to her signature scarlet lips, which keep her looking like herself, even when steroids cause face bloating and other side effects.

But when you look so good that no one knows you’re not feeling it, does it help or hurt?

“There are times when someone has a chronic illness, that they relish in normal interaction with other people. If you’re not showing lots of visible signs, you have more of a chance to feel normal,” says YouBeauty Psychology Advisor Art Markman, Ph.D., a professor of psychology at The University of Texas.

This appears to be a boon for our wellbeing, though it can backfire on days where you’re with people who can’t see the disconnect between how you feel and how you look.

YouBeauty reader Maria has trouble interacting with others during a Multiple Sclerosis flare-up. “Sometimes I need support and if people think you look good, then they are not understanding. If you had a neck brace on people would know something was wrong,” Maria says. “On the other hand I don’t want sympathy either, so it’s complicated.”

Dr. Markman suggests that when you really aren’t feeling well “You have to learn to say, ‘I’m having a tough day,’ if you’re not showing it on the outside,” he says.

This is exactly what Chef Seamus Mullen does when he experiences RA symptoms. “I think it’s most important to speak openly about it.” He’s straightforward on a bad day, telling his restaurant staff at Tertulia what he can and cannot do. That way, when he’s stubbornly trying to lug something into the kitchen with achy hands, someone will lend a hand.

Even on the ugly days, there are ways to try syncing your body and mind, so you start feeling as good as you look.

Enhancing Mindfulness: Conditions can flare up in response to emotional ups and downs. One component of an integrative medicine perspective is psychoneuroimmunology — the study of the link between psychology, the nervous system and immunity, based on the idea that our bodies respond to the way we process information mentally and emotionally.

Both Jane and Maria use guided meditations, which help them reframe stressful situations and avoid exacerbating their symptoms. Maria puts aside 20 minutes to meditate with a Healing Meditation by Kelly Howell. “It gives an overall focus on the strengths of your body and how you can incorporate those strengths into feeling better,” she says. Other times, if she is experiencing a significant amount of stress, she visits a placid place to reflect.

“I go to the convent; it’s really quiet. You hear the cloister nuns chant. It’s an environment that’s really conducive to going within, and being grateful for your blessings. I feel lighter, stronger and supported. Everyone there is focusing on mindfulness,” Maria says.

Jane wishes she were more spiritual, but admits that she’s not very. She finds other ways that bolster her emotional wellbeing. Jane’s doctor recommends that she continues her hobbies as usual. “I have a homework assignment to go to my studio and paint,” Jane says of her last doctor’s appointment.  In the quiet space of her studio, she produces abstract portraits of woman in vivid colors, so alive, they appear to jump off the canvas. Painting is one of many hobbies that people get immersed in, that can greatly benefit physical and emotional health. Called “flow,” regularly getting lost in such an activity can enhance concentration, self-esteem and self-reported health.

Finding a Personal Exercise Routine: “Keep regular exercise, not just because it keeps weight down, but it makes you feel better,” Dr. Nicolai says. He adds that mild to moderate exercise is best for boosting your mood without overtaxing your body.

With arthritis or pain-related problems he recommends activities like water aerobics or Zumba. “After doing that you’re going to have a better physical response than if you sat for three to four hours at a time,” he says. “Changing the way we move can change the way we feel.”

Jane has done water aerobics. “They have a dedicated class for people with arthritis and they keep the pool at 86 degrees, so it is very nice. I did find it beneficial,” Jane says. “I find, however, if I am in really bad shape, I don’t want to go and usually don’t. Look at it this way: if you had the flu, would you go out and do anything? That’s kind of how it is,” she adds.

Feeling well enough to muster up the energy to exercise class is often the biggest hurdle.

Maria splurges on private Pilates lessons because she feels it forces her to make exercise part of her Multiple Sclerosis treatment. “It’s a private setting so I can’t blow it off, I have to commit to it,” she says. Setting small goals for yourself can give you the push you need, even on the bad days.

Not Giving “It” Power: While it’s beneficial  to talk about what’s on your mind, talking too much about the negative aspects of your disease may drag you down. “I don’t want people to be in support groups that focus on symptoms and nastiness,” Dr. Nicolai says. He encourages patients to rise above a hopeless, negative attitude, so they can still feel beautiful.

If your diagnosis isn’t definitive, Dr. Nicolai even suggests not naming your problem. “A lot of people’s autoimmune symptoms are nebulous or grey. The lab tests say you have one marker for lupus, and another test says Sjogren’s syndrome.” In this case, he suggests focusing more on treatment than naming the problem. Let’s keep it gray, see how it’s manifesting itself.

Being Beautiful, Inside and Out

“Rheumatoid Arthritis is my reality, I can’t deny it and run away from it. I have to acknowledge it,” Chef Seamus Mullens says. This mentality not only helps him, but will help many more people — his anti-inflammatory diet cookbook, “Seamus Mullen’s Hero Food,”  is set to come out this spring.

Hone in on the things you know will boost your mood and beauty. Surround yourself with people who lift your spirits and understand your situation.

Even on those days when you feel your body is complete chaos, you can maintain your personal style and inner calm.

 

November is CRPS/RSD Awareness Month

CRPS

November is CRPS/RSD awareness month. Personally I guess I have never had to (thank goodness) pause to think what an awareness month has really meant for me in the past. I have not really been affected too much in the way of friends and families to fight for awareness for. A friend of mine passed from cancer and I have held a few “Biggest Morning Teas” in her honour and have always tossed coins that way. I always always scrounge for spare change for the Salvos, or any other charity if someone knocks. I have always in some way dedicated my time to helping at Food banks or knitting for the needy and I can’t really remember a time when I was an adult that I wasn’t volunteering for something or other.

Here in Australia there is no charity that collects for research for CRPS/RSD. I tell people that it is a somewhat rare disease but when you read facts such as:

RSD/CRPS is NOT a rare disorder, and may affect millions of people. It is hard to pinpoint the number of people who have RSD/CRPS, though some estimates put the number of people afflicted with this syndrome at 6-10 million and other estimates claim between 5% and 10% of the population.
That makes the RSD/CRPS population of the United States greater than that of the Combined United States Military, 2,221,502.

https://www.facebook.com/CRPSDOM

All these people and still you can feel so desperately alone. In Brisbane I feel personally that the medical profession in the public sector seems to be so backward. All the jokes that other states tell about Queensland being backward, well the lack of knowledge by one particular “so called” professional that treats more CRPS patients than any of the other doctors at the Royal Brisbane really should just read just 1 article on this disease. How can we get ANY treatment as a public patient in Brisbane? The answer is seeming to be – you don’t. After 2 years of waiting and begging for treatment I am back to square 1, trying to find a new clinic to take me on about an hour from home. Luckily though it comes with good references (Thank you Col) so it is again a waiting game.

At present I am not up for waiting games. It is Day 9 of a horrible flare that causes me to not be able to shower myself or change my clothes, basic day to day everyday kind of things. On Day 9 it also means that I have become completely tolerant to anything that may have just taken the edge away from a 19 out of 10 pain…all day long….so I now greet each day with sleep and meditation…all day long. My sense of humour fast evading me. At this point I ponder….a sympathetic nerve block….a dose of ketamine…dreams that once were about trips to America and other places. I wonder how long I will have to sit here stuck in this never ending circle before we can try something new.

If there are so many people with this disease why aren’t their more trained specialists in pain relief as there is no cure presently for CRPS. How does 1 raise awareness…is it the same as the riddle “How do you eat an elephant…one bite at a time.” How do you raise awareness for CRPS/RSD…one person at a time. If there are so many people in this excruciating pain why are they letting us suffer?  Below is the McGill Pain Index showing a scale with this disease being the highest chronic pain you can feel (it is also represented as Causalgia on the scale)
McGill Pain Index

This disease ruins lives in so many ways. I couldn’t begin to convey how things have changed for Master Shazz and me. Master Shazz became my carer at 13. This disease has you clinging to any tiny weeny happiness that once you probably didn’t even see. This disease has me clinging to the fact that there are still so many people in this world worse off than me.

So on my “wee little blog” we will eat the elephant 1 reader at a time and remember the mantra on Day 9 “This too shall pass”

Previous Older Entries

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A World Of Pain....Complex Regional Pain Syndrome

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Rambles of a college girl with RSD/CRPS...welcome to my world.

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Conversations with Street People

Paulette's Blog

A Place of Worship: "Tugging at the Heartstrings of God"

Attack of the CRaPS

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Just another cavalcade of random bitching... ***Updates SUNDAYS