Quality for kelly

https://www.mycause.com.au/page/85485/helpkellytolivelife

Please read the link to see my story

PLEASE JUST READ IT, if then you feel you can help i will humbly accept any donation with much appriciation

Kelly

I really need some space to improve my quality of life. I'm sick of just exsisting instead of LIVING.

I'm only 40yrs old and this money will help build an area that is more condusive to my conditions. The builing is going to cost roughly $50.000, so anything will help

Thanks you for at least taking time out of your life to have a read of my life

 

I have attached something Kelly herself wrote about her issues  all the info I can think of abut Kelly and why I’m trying to raise money to help her to live with these chronic illnesses and  issues that have put me in a situation seeking some quality to her  life as she suffers from being sick

“I want her to have some quality of life” Please help me make this happen she’s only 40yrs old and since people can’t see her problems they tend to forget she has them.

I’m trying to raising money for an extension to the home she is living in so she can have some private space that she can move around in with a larger toilet and shower to make life easier for her. This extension will cost about $30.000.

I’m also trying to raise money for her to get some treatment that is not available here in Australia yet but is in America and seems to be working really well with R/Arthritis. This is going to cost the same about $30-$40.000 to get her there and receive treatment.

So any money raised will go toward whatever she feels is the most important right now.

Here’s what she wrote

1. Crohns Disease
2. Rheumatoid Arthritis
3. Severe Depression
4. Fibro Myalgia

 

1. Crohn's disease (also spelled Crohns disease) is a chronic inflammatory disease of the intestines. It primarily causes ulcerations (breaks in the lining) of the small and large intestines, but can affect the digestive system anywhere from the mouth to the anus. The symptoms and severity of Crohn's disease vary among patients. Patients with mild or no symptoms may not need treatment. Patients whose disease is in remission (where symptoms are absent) also may not need treatment.

         * There is no medication that can cure Crohn's disease. Patients with Crohn's disease               typically will experience periods of relapse (worsening of inflammation) followed by periods of remission (lessening of inflammation) lasting months to years. During relapses, symptoms of abdominal pain, diarrhoea, and rectal bleeding worsen. During remissions, these symptoms improve. Remissions usually occur because of treatment with medications or surgery, but occasionally they occur spontaneously without any treatment.

         * Since there is no cure for Crohn's disease, the goals of treatment are to 1) induce remissions, 2) maintain remissions, 3) minimize side effects of treatment, and 4) improve the quality of life. I am now on a very intensive regime of Narcotic drugs to help maintain my Crohns & Arthritis with little outcome of relief and symptoms. Having an Ileostomy also brings in its own issues to the severity of my illness. 

 * Diagnosed Feb 1993

* It was from mouth to rectum from the start

* My case was one of the worst at the time for my age of 18

* Started on very high dosages of prednisolone which made me go from 60kg to 100kgs. It was a no win situation every time I tried to get off the steroids the Crohns would flare up, so my dosage of steroids would also go up down causing my weight to fluctuate considerably which impacted on my state of mind and also due to the continued long term use caused major issues with my bones and joints and could not be controlled so I was set up for surgery to remove my rectum, large and part of the small bowel leaving me with a permanent ileostomy after 6 yrs. of pure hell. I stayed at home because I had to go to the toilet 30 to 40 times a day so going out was not an option for me. I also to this day get severe stomach cramps that are like labour pains (I’ve been told) every day about 10times, in the beginning it was more like 60cramps a day. During this time I was at a Doctor at least twice a week. Now every week at least once a week. My hospital visits to date have totalled 40+, and I can still be admitted up to 5 times a year, with the duration of about 2 weeks.

The medications were so bad and made my whole body felt disgusting, my state of mind was really bad, my bones started to thin and most of all completely incapacitated me for yrs. I lost my 20’s, 30,s and now am looking at losing my 40’s due to other issues (to follow)

Now the drugs I’m on have massive side effects including death. Methotrexate which I have to inject myself in my tummy every week has made it impossible for me to have children as I can’t go off the drug to have children as the drugs are the only thing that makes the Crohns semi  bearable. The drug also deforms the foetus. Then the Infliximab (remicade) which is an infusion every 8weeks in hospital. If I’m even a week late symptoms start to get worse and I’m house bound due to the ongoing pain. Which made working very difficult and now impossible.

• 1993 steroids for 6yrs
• 1998 1st major surgery to remove rectum, large and part of small bowel, leaving me with an ileostomy
• 2002 emergency surgery for twisted bowel due to scare tissue
• Dr Glasser who was my main gastroenterologist at the time requested I find another Dr as he couldn’t do anymore for me.
• After surgery 1st & 2nd it was extremely hard to wok or go out as the pain was unbearable and I was carrying an extra 40kgs
• The surgery was unbearable but I decided to continuework to have something to focus on besides the pain and the way I looked
• Spent the next 7/8yrs trying to be as normal as I could which really wasn’t normal at all but persevered against Doctor’s orders to quit working, I continued to work full time (faking it till I made it) in jobs that were more autonomous so I could work and be sick.
• 2010 the arthritis started. It was a secondary disease to the Crohns and started with a sore finger or knee, and then within 6mths it was affecting every part of my body from top to toe literally.
• The pain included cramps, blockages, infection, weakness, hernias, ulcers.
• This all together made having a social life, so home was my life.
• In the past 22yrs I have had at least 15 – 20 life threatening problems, such as flare ups due to the Remicade was not on the PBS (it is now, but need to prove that I’m sick so the Government gives me the prescription to get the drugs that help me.
• These hold ups in getting my infusion causes symptoms of my Crohns which is pain no-one would deserve all day every day.
• Now I have the ileostomy which I’ve had for 13yrs which was supposed to keep me relatively pain free. This was not the case as it grew back in other areas causing the same pain of flare ups, cramps etc. This means on a daily basis I have to deal with what I eat, how much, where it came from so I can be in control if something’s happens like a breakage or blockage. It is an ongoing battle to keep it under control (which is hard due to the type of Crohns I have)
• At present it is hard to go out because if I’m bumped, pushed or shoved it could be a critical outcome.
• My friends have long gone due to me letting them down all the time. My issues are so unpredictable that I would have to cancel 90% of the time
• Travelling is almost impossible as sitting confined to one spot is very hard.
• I now can’t travel without help because I can’t carry my luggage or eat the food on the plane.
• These days my Mother is my carer (even having to type this letter for me) with help from my brother and sister in law who all help me to try having some quality to my life we now all live together.
• All in all at present I cannot walk, drive, shower, cook, eat or take my medication on my own without help.
• Due to all this I’m unable to live on my own and sold my unit and my car
• Crohns has caused such havoc on my life that the depression is severe and being monitored by my Doctor’s
• Due to medications that I can’t go off or symptoms get worse will not allow me to mother children now or in the future.
• My Doctors have always found it hard to control my disease as it is severe and medications don’t work. Or work for a while then stop. Contributing to the control of the disease.
• As Crohns is a chronic disease it’s not going anywhere except worse till the end. Keeping everything at bay is near impossible with meds and daily activities.
• Mostly the outcome is that I can no longer work at any capacity as my body just doesn’t cope anymore. On my Doctors advice I have quit work, sold my house and car to relieve some pressure. My Doctors anticipate that I will not be able to have a career in any way and of course this has added to my depression and hopelessness which has caused me to try and take my life on many occasions (3 this yr.).
• Being cared for under Dr Blumberg, Carol Bush, and Dr Gild. I have been admitted at Perth psychiatric Clinic 2 times this yr.
• All my Doctors feel this is the only way forward for some quality of life of which I do not have now.
• Doctors did advise me to give up work 10/15yrs ago but I tried to continue work as long as I could and work was my life and I loved it.
• But now my body has said enough I am completely unable to work at all now or in any foreseeable future.

 

2. Rheumatoid Arthritis

Rheumatoid arthritis (RA) is an autoimmune disease that causes pain and inflammation of the joints. Other parts of the body can also be affected. Inflammation causes the joints to become painful and swollen and movement may be restricted. Stiffness in the joints is common, especially in the morning. The inflammation caused by rheumatoid arthritis can result in damage to the joints. Rheumatoid arthritis usually starts in middle life, with onset generally occurring between the ages of 35 to 64, and affects 1 per cent of Australia’s population. An estimated 57 per cent of people with rheumatoid arthritis are women.

The most common symptoms of rheumatoid arthritis include:

• Swelling, pain and heat in the joints
• Stiffness in the joints, especially in the morning
• Persistent fatigue
• Sleeping difficulties because of the pain
• Weak muscles
• Rheumatoid arthritis is a disease in which inflammation (pain, heat and swelling) affects the joints and other organs of the body. The hands, feet and knees are commonly affected. Stiffness in the joints is common, especially in the morning. There is no cure for rheumatoid arthritis but there are ways to manage tithe same joints on both sides of the body are usually affected.
• As well as Crohns disease I now have severe chronic R/Arthritis. I have been hospitalised numerous times for pain management of which I now have a pain therapist (Dr Jenny Morgan).  I have also been to the pain clinic for pain management and together with Dr Cole (Arthritis) and Jenny Morgan (pain) have been working together to manage the pain which to date is not under control and still spends days in bed unable to walk. These two Doctors have advised me they have tried all medications that are available and can be taken with all my other medications and are unable to give me much relief for the Arthritis. The drugs I’m on are heavy duty Narcotics.
• My complete body from my jaw to my toes is affected with severe swelling which cripples my body leaving me unable to work, walk, drive, eat, sit or stand.
• These symptoms are regular and ongoing and has been the impetuous for me finally having to accept I can no longer work in any capacity.
• My Doctors encouraged the move into the family home so I have support and care as I am unable to do it on my own anymore. 

 

3. Severe Depression

This illness is diagnosed if you have some of the following standard complaints in depressive illness.  These include:

Lowered mood – feeling sad or unhappy most of the day, and nearly every day.

Generalised negativity and pessimism – so that everything seems black or pointless.

Loss of interest or pleasure in your normal activities.

Tiredness, chronic fatigue (often not relieved by sleep).

Avoiding social contact.

Less talkative than usual.

Reduced concentration, memory or ability to think clearly.

Reduced productivity or ability to cope.

Tearfulness or crying.

Impaired sleep, appetite or sex drive.

Reduced self- confidence, feelings of worthlessness.

Anxiety and irritability.

Thoughts of life being pointless, especially when losing hope of recovering.

 

I was diagnosed with clinical depression when I was 18yrs old and started on anti-depressants. I have been on some form of anti-depressant since then. Over time the drugs have got stronger and stronger now I’m on anti-psychotics. 

Depression has been an ongoing fight in my life which causes me not able to get out of bed, eat, socialise or work. I have to constantly seek council and help from my family so that the thoughts don’t turn suicidal (of which they have 4Times now since I was 18) but this is hard to keep at bay as my life has so much ongoing pain without relief. It’s an ongoing issue that I have to be aware of all the time. When pain is chronic constant and never ending that you want to die, keeping myself at a liveable point is constant and ongoing and very tiring. My depression has been ongoing for 20yrs. I’ve been hospitalised, booked into Perth clinic, and seen regular helpers.

Due to everything above I am unable to make decisions on my own.

Having severe debilitating depression is extremely hard to manage as it comes and goes in severity. At times I can’t get out of bed, other times I can’t communicate, eat or sleep making the symptoms worse.

Living with depression is on its own a full time job, which is exhausting on my mind and body.

Working with severe depression has now become impossible. Working so closely with people all day hiding your depression is hard work.

 

As Crohns is a type of auto-immune disease in just the last year I have suffered from a liver infection, which had me off work for 4weeks. According to the doctors this has left me with permanent liver damage.

I also suffer from skin disorders that cause sores on my face, back and arms.

I also have to be very careful about being near anyone who even has a common cold because I can suffer for weeks unlike others who recover in days.

Along with the nature of my Crohns, medication has caused permanent thinning of my bones.

The medications also cause me to have a dry mouth all the time. This has caused gum and teeth issues which have to be monitored by my dentist.

I also shake all the time from the medications which can be very embarrassing when out or when I worked clients would ask why I was shaking.

One of the medications also makes me photo sensitive so I can only be outside for 5mins at a time. This was difficult to manage while working.

After each infusion every 8 weeks I am in bed for 2 days unwell, which also was difficult while working.

The arthritis causes severe swelling of most parts of my body especially my feet, hands and legs. They swell so badly I can’t put shoes on as they don’t fit. My hands get so bad I can’t clench them carry things or drive.

Generally I am in constant discomfort even at night time as I’m unable to sleep because every time I move it hurts and wakes me. Also having the REM sleep disorder which I’ve had now for about 10yrs. This disorder means I move in my rem sleep when your body is supposed to be paralysed, I move causing bad sleep conditions. On top of all that my body also over heats at night and I wake up wet.

Due to medication I perspire excessively which is uncomfortable and embarrassing. I even tried to rectify part of the problem by removing my sweat glands from under both arms. Unfortunately this procedure did not work and I still perspire excessively from all parts of my body. Of course this added to the depression.

I even have a hospital bed at home to help me in and out of bed.

At times I’ve had to use a bed pan at home because I can’t get to the toilet.

 

4. Fibro Myalgia

This means my pain receptors are sensitive than other people so even a hug hurts if they aren’t gentle.

 

Essentially I suffer both physically and mentally and thus unable to live what people call a “normal life” and therefore being gainfully employed. Even part time work has become impossible.

I hope you can appreciate and have a clear understanding of what I have to endure on a daily, weekly, monthly and yearly basis for the past 20yrs.

I just want the next 20yrs too be easier for me and with your help it might be.

 

Any contribution to help me would be of great benefit to helping me have a living environment that is better suited for myself.

 

Thanks for your time and PLEASE if you need more information, reports anything at all just ask and will get for you ASAP so that this process is not delayed.

 

Doctors I am under

Dr Antonia Cole – Arthritis 08 6102 2858

Dr Levitt – Surgeon 08 9382 4577

Dr Gild – GP 08 9345 2944

Dr Ormond – Gastroenterologist 08 9382 9650

Dr Carol Bush – Clinical Physiatrist 0400916331

Dr Blumberg – Physiatrist 08 9488 2946

Dr Jenny Morgan – Pain Specialist St John Subiaco 08 9382 6111

Dr 7 – GP 08 9349 6777

Dr Atlas – GP 08 9442 5111

Medicare Local – Suicide counselling

Dr Masel – Skin Specialist 08 92280410

Dr Gwen Cheng – Dentist 08 9325 4175

Dr Berrigan – Pain therapist St john Subiaco

 

 

Medications I take

Infliximab – 8weekly infusion in hospital for Crohns

Methotrexate – weekly injection I do myself in my tummy for Crohns

Gabapentin  - 300mg 3 times a day for pain

Mirtazapine – 45mg once a day for sleeping

Valium – 5mg 3 tabs when required for calming

Escitalopram – 10mg once in the morning for depressant

Cymbalta – 120mg once a day for depression

Megafol – 5mg once a day for aid in having the Infusion

Paxim – 2mg 2 to 4 at night for sleep disorder

Sulfasalazine – 500mg 4 a day for pain & arthritis

Panadine Forte – 8 a day for pain

Celebrex – 100mg 1 a day for arthritis

Plaquenil – 200mg 1 a day for arthritis

Nexium – 40mg 1 a day for reflux

Krill – 1500mg 2 a day for arthritis

Vitamin D – Strong 2 a day for iron

Iron plus – 1 a day for iron

Hemp Oil