Hospital

As most of you probably know by now I have been in hospital over the past week. I am home now but still very sick but I wanted to fill you in on whats been going on.

I have a ACE (other terms for it is a appendicostomy or Malone Procedure. This is the definition
the surgical operation of opening the vermiform appendix to irrigate the large intestine.It is basically a procedure where they use the appendix to make a channel to the bowel for chronic constipation. I have had this for 3 years and have been incredibly happy with it and never had any issues with it... until this saturday.

So backtrack to Thursday I was due to have a clean out but I had come down with a stomach bug and I was told when I first got the ACE if that happened to not do a clean out until a day after the virus was finished. So Saturday I went to do my clean out and could not get the catheter in any more than where the plug stopped, it was bleeding and the liquid was spitting back out at me. Waiting out Saturday night and Sunday was so hard but on Monday we went to my GP Dr. Lomas (who I LOVE!) She and her nurse tried to get it open with cervical dilators (haha!) but it wouldn't go in and we didn't want to push it to much and end up in emergency surgery. She told us that she would call the stoma nurse and the colo-rectal and surgical team to try and get me in but she couldn't so Mum rang up and they told me to come straight into the ER and that the surgical team would be waiting. The hospital was an hr away so we jumped straight in the car and headed up there, we didn't pack a bag as we didn't think I would be admitted... how wrong we were. 



The surgeon attempted to open it while I was awake even though I didn't move he couldn't get it and he didn't want to push and perforate the bowel so he admitted me to get some images to know where to aim. When he did a Xray he said that he didn't want to attempt it and I would be spending the night at the hospital... the first inpatient stay since I transitioned to the adult hospital. I finally got into the room at 8:30pm. I was EXHAUSTED! I got a heparin shot (by the end of the stay my tummy looked like a pin cushion. I also got some IV nausea meds and pain meds.

In the ER

The next morning I woke up at 4am and couldn't fall back asleep. I had another heparin shot . The stoma nurse came to see me and told me that my ACE looked like it had been well taken care of and it wasn't my fault. The surgeons came round and ordered a contrast study and fistula gram and told me I would most likely be in that night as well. They tried to remove the blockage with wire but were unsuccessful and once again didn't want to perforate the bowel.  The contrast study didn't work because the liquid kept pouring out as the hole was closed (I knew that was going to happen). 

Thursday morning was rough. I was meant to go to Rocky Bay's Walk with Me event as an ambassador but I was too sick to go. I also got rough news from the doctors- They told me that it looked like the ACE was completely blocked- due to scar tissue from EDS and the weight I have gained from the steroids. They talked about giving me a stoma bag. 

Still a Zebra

On Friday I had surgery to do a manual evacuation and  try and reopen my ACE but as suspected it is completely blocked up. I have to make some tough decisions- and soon. I slept most of the day and had a fever on and off all day. 

Before Surgery

After Surgery

On Saturday I was planning to hold a scentsy party- I was really disappointed not to be out on time. I had to stay in to TRY and clean out my bowel as the manual evacuation didn't work. I got a NJ tube placed and got 3 litres of colonlitely through the NJ tube, 8 suppositories and a enema and still didn't go to the bathroom as much as they were hoping I would be. 

On Sunday the variety christmas party was on and I had promised i would take my nieces and nephew. They let me out for the day but I had to come back. I was so sick the whole time, I could barrely keep my eyes open. When I got back to the hospital my blood pressure had gone from 100 to 150! I was in my wheelchair the whole time and didn't do much but I still got so sick from it. When I got back they put some pico prep through my NJ tube to prepare me for a enema on Monday. 

On Monday I was taught how to use the NJ tube and was allowed home, on the conditions that I put colonlitely through the NJ and rested as much as possible.  I was told I am still very sick but until I make decisions they can't do a lot for me. Now I have to think about the future and my quality of life. EDS is cruel and hard and it always reminds me how life can change in an instance.

During my stay I missed my service dog Mary so much but I have been told that next time she can stay with me- as she picks up on my seizures before they happen

I want to thank everyone for their thoughts, prayers, cards and gifts- please remember a kind message means more than an expensive gift.. 

Flowers from Toni

Flowers from Rocky Bay and my Aunty and Uncle 

Beautiful Zebra from a friend it says:
"I'm sending you  hugs, smiles, sunshine,  rainbows and butterflies"

Flowers from my Aunty and Uncle

Please pray for me- and family and friends please remember that just because I am home it doesn't mean I am healthy.

Why I use a wheelchair when I can walk.

A question I get a lot is why I use a wheelchair if I am able to work. If you haven't had much contact with wheelchairs when you see someone in a wheelchair you think that if someone is in a wheelchair they MUST be paralysed- WRONG.

That mindset is how this meme started getting circulated:

The person in this meme could have very easily been mine. It isn't rare that I will stand up if I can't reach something on a high shelf.

The reasons I use a wheelchair are:

1. Dislocations:

Because of the EDS my joints dislocate constantly and I am unable to walk long distances without dislocating my hips. There are times where I can walk short distances and there are times I can't even walk to the bathroom. Every day is different which means the amount of time I use my chair is different.

2. Seizures:

I have recently started to have seizures so for my own safety when I am out I use the wheelchair as dislocating joints and hitting the floor doesn't help.

3. Drop Attacks:

I have drop attacks so for the same reason as the seizures I use a wheelchair when I am out.

4. Fatigue:

I have really bad fatigue caused by EDS and chronic fatigue and most days walking takes more spoons than I have so I use the chair to help preserve my energy.

5. Muscle Weakness

I have muscle weakness and the more I walk the worst the muscle weakness gets and the more likely I am to fall. So it is again a safety issue.

6. Chronic Pain

I am in constant pain and walking takes that pain from a 4 until a 9 so that I am not crying by the end of my outing I use the chair.

As you can see there are many more reasons to use wheelchairs than just paralysis. I have come to the conclusion that so I can enjoy myself sometimes I use the wheelchair. It was a hard thing to accept but since I have I have been able to get out more.


Eventually I will be in a wheelchair full time and I want to enjoy the fact that I am not glued to my seat and stand up if I want to reach someone. You can't tell if someone is paralysed just from looking at them. Don't judge a book by its cover

Ehlers Danlos Awareness Month- Fact 18, 19,20

All the credit for these graphics goes to the Invisible Zebra Facebook page. Please go and like their page and tell them that I sent you.

Fact 18:

One of the main things that I struggle with is tears and strains, even after the joint has gone back in everything around it hurts just as much if not more. It is painful. I also have spasms and they can be very debilitating

Fact 19:

I also have very bad neck pain. I have to use a neck brace quite often as if I sit for a long period of time I am unable to hold my head up.

Fact 20:

I also have lower back pain! It hurts to sit and stand too much the only way that is somewhat comfortable is laying on my side. I also have sciatica which is a really horrible feeling!

Upcoming Appointments and What I want from them

Over Christmas and New Year a lot of my doctors are going on holidays so I get a break- partly. Yay!!

These are the upcoming appointments (without emergency appointments) with a little 'blurb' about what I am expecting from them.

Monday December 21st- Counselling. I am seeing a counselor to help me deal with the reality of my health so things don't get on top of me. All I want from this is ways to cope.

Tuesday January 22nd- Sleep Clinic. This is a preliminary (another one!) appointment to explain the sleep study to me and what I will get out of it. I need a sleep study to find out whether or not I am having seizures while I sleep. Why I have such unrefreshing sleep and why I can't get to sleep and wake up normally. Last time I was there they gave me some Circadin (Melatonin) to help me sleep and it is amazing! I am still not getting refreshing sleep but I am sleeping at least!!

Wednesday January 23rd- Dr. Kevin Murray (EDS specialist) What I am hoping from this appointment is his opinion on my drop attacks or absence seizures. Also I am hoping we can switch my pain meds around a bit so I have more pain control. I will also ask him about whether or not we can do something about my hip dislocations. I love seeing Dr. Murray as he is an amazing doctor and a great help to me. I hope this appointment goes as well as the last one!

Tuesday January 29th- Blood Tests. This is to check my vitamin and thyroid levels.

Tuesday February 5th-Dr. Jones. Dr. Jones is my hypothyroidism specialist. I am hoping that there will be nothing wrong and I won't need to take any more medications. But my glands are swollen so I am a bit worried.

So they are the upcoming appointments. I will make more posts as there are new appointments.

Hugs,
Rachael
xo

My Awareness Efforts

I started to try to raise awareness for EDS as I wanted to help fellow EDS sufferers so I started to contact news programs, medical journals and magazines. It didn't take long before I felt like I was making progress.
The first thing I was featured in was Channel 10 News: Channel 10 :)
Next I was on a radio show :) Sadly I don't have the link for that avaliable.
Then I was in the Therapy Focus Magazine: Family Focus. It features a letter I had written to my class when I was bullied. You can read the story and the letter here: Therapy Focus - Rachael speaks out
Then I was in the Arthritis Today Magazine with a gorgeous girl Amber. I had a great experience doing this! Arthritis Today Magazine

I have a page where I sell awareness products:facebook.com/EDSAWARE
I also make awareness images for others with EDS for free. You can view some here: http://lindamadhatter.wordpress.com/2012/12/09/this-is-what-eds-looks-like/
If you would like one. Please email your image to: edsawarenessproducts@gmail.com

My dream is to raise even more awareness and to go to schools to talk about why you shouldn't bully people with illnesses and how they feel.

Hugs,
Rachael

My Symptoms

I thought it may help people to know what my symptoms are I am sorry if this is a long list. I also think it will be good to have a list of all my symptoms for doctors and me.

• Hypermobility
• Stretchy Skin
• Fragile Skin
• Small harmless tumors at pressure points
• Thin translucent skin
• Joint dislocations
• Joint subluxations
• Flat feet
• Cervical Instability
• Muscle Weakness
• Scoliosis
• Easy Bruising 
• Delayed Wound Healing
• Soft Velvety skin
• Cigarette Paper scars
• Unexplained Stretch Marks
• Mitral Valve Prolapse
• Poor Balance
• Absence Seizures
• Severe Headaches
• Migranes
• High (mouth) Palate
• Pain
• High Resistance to Anesthetics 
• High Sensitivity to Light
• High Sensitivity to Noise
• Near sightedness
• Osteoarthritis
• Low Muscle Tone
• Lightheadedness
• Fainting
• Near-Fainting
• Palpitations
• Shortness of Breath
• Weakness
• Inability to sweat
• Bloating
• Vomiting
• Abdominal Pain
• Blurred Vision
• Fatigue
• Headaches
• Sleep Disorder/s
• Myofascial Pain
• Dizziness
• Tachycardia
• Clamminess
• Blood Pooling
• Intolerance to Heat
• Low Blood Pressure when standing
• Cognitive Impairment
• Cold Hands and Feet
• Chills
• Numbness and Tingling
• Weightloss
• Nausea
• Paleness of the skin
• Thin brittle nails and hair
• Clumsiness
• Burning Pain
• Changes in Skin Temperature
• Fevers
• Sore Throat
• Swollen Lymph Nodes

I think that is all!

Hugs,

Rachael

Who am I and what is this blog about?

My name is Rachael Ralston. I am 15 years old.  I love to be with my friends, scrapbook, read, shop and do my school work.... oh yeah I am also in a wheelchair most of the time and I dislocate joints about 20 times a day... yep you read right 20 times a day. I have a lot of medical conditions and they don't just affect my joints, they affect my skin, inner organs, eyes and cause my constant grief... but I want to make it clear I am HAPPY!

So what are these medical conditions? I have Ehlers Danlos Syndrome Type 7 (Arthochalisia), Hypothyroidism, Postural Orthostatic Tachycardia, Osteoarthritis, Gastroparesis, Carpal Tunnel Syndrome, Slipping Rib Syndrome, Complex Regional Pain Syndrome, Chronic Fatigue Syndrome and Fibromyalgia.

So what are all these conditions?

Ehlers Danlos Syndrome Type 7 (Arthochalisia): With Ehlers Danlos Syndrome it causes the collagen and connective tissue to be damaged. This causes: Joint dislocations and subluxations, the blood vessels to be damaged, the heart valves to be damaged, my skin to be sensitive, severe chronic pain, hypermobility, and most of the time people with EDS are unable to function normally due to the pain and dislocations.

Hypothyroidism: I can not control my body temperature, paleness of the skin (especially when sore or tired), weakness and bloating.

Postural Orthostatic Tachycardia: This condition causes me a lot of problems. The symptoms for me are: lightheadedness, fainting, weakness, tachycardia, shortness of breath, chest pain, nausea, vomiting, seizures, fatigue, headaches, sleep problems, cold hands and feet, chills, noise sensitivity, light sensitivity, loss of appetite, muscle aches, weight loss, restless leg syndrome.

Osteoarthritis: This causes me pain in a lot of joints, it is in my jaw as well and sometimes it causes me to be unable to chew food.

Gastroparesis: Inability to digest food, nausea, vomiting, weight loss. This condition can cause malnutrition and dehydration.

Carpal Tunnel Syndrome: Carpal Tunnel Syndrome causes clumsiness when gripping objects, numbness, tingling, pain going up to the elbow, pain in the wrist and thumb, weakness.

Slipping Rib Syndrome: This causes a lot of rib pain, sometimes it feels like you are having a heart attack.

Complex Regional Pain Syndrome: Intense burning pain, change in skin temperature, muscle spasms and muscle wasting

Chronic Fatigue Syndrome: Extreme tiredness, feeling unrefreshed after sleep, forgetfulness, concentration problems, confusion, fevers for no reason, muscle aches, muscle weakness, sore throat and swollen lymph nodes.

Fibromyalgia: Painful areas call tender points, fatigue, numbness and tingling in the hands and feet, headaches

So they are the conditions I have and the symptoms they cause. The most serious ones for me are Ehlers Danlos, Chronic Fatigue Syndrome, Postural Orthostatic Tachycardia and Gastroparesis.

I have made this blog so that people with these conditions know they are not alone and so that family and friends can keep up on what is happening with me. I will do posts aimed at people with these conditions, some aimed at friends and family, some aimed at the general public, and some for everybody.

Please continue to read my blog. Within the next couple of weeks I hope for it to be completely up and running!

Hugs,
Rachael