www.artderise.com - My diagnosis, story and links
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 List of diagnosis - several other suspected but not posible to exam due to the E.D.S. 
Background and development.


Asthma and bronchitis
 I have had it for as long as I can remember, it is well controlled now. The left lung is slightly atypical, and I have more pain from it than the right lung. It feels like a giant hand that closes on the lung.
Back;
In 1990, I got what looked like an innocent little prolapsed disc, between 4 and 5 lumbar vertebrae. Simple little thing, not many bad symptoms, mostly fatigue in the back.
The doctors had just gotten a newly emerged technique that was perfect for my type of prolapse. It wouldn’t require anesthetic nor leave any major scars.
A “piece of cake” for the doctors to perform!
It's called a Percutaneous Discectomy. You enter from the side of the disc with a small instrument, find the ill disc material and suck it out. A very gentle operation. Compared to the old familiar type of operation for slipped disc - yes - definitely! And all brand new to Danish doctors!
Before surgery I could do what you`re “supposed to do” - my stomach was working, my bladder was fine, I was, as I said - tired - in my back and had some weird pain. Scans showed a small prolapse.
No radiating pain or sensation down the legs, meaning it was a small prolapse which was judged best to be removed right away before it got worse!
Demonstrable and appropriate to solve with this new technique.
Before the procedure, I could walk, run, ride, run up and down stairs, play handball, train acrobatics - I was used to a very, very active life.
I came home with pain I had never suspected existed - my right leg froze as if it had been placed in a freezer for many months and then tried to put back to the warm, living human flesh again and sometimes burned it completely in an absurd way. The left leg soon began to have symptoms too.
Soon after the operation - down in both legs it felt like there had been a rubber band from the surgical site (knife) in the back and down to both feet. A rubber band that tightened dramatically and the pain was - overwhelming! And at the same time you could stick a needle in it without me really feeling that at all!
I could not climb stairs - I could barely move - and did not understand the message from the surgeons - they had “touched the Sciatic Nerve (from the Greek word “ischias” that means pelvis).”
 And that it probably would be much better after a few weeks!
Wow!! 
Well, I might just have to find a physiotherapist so I could learn to walk properly and move again.
I had some problems with stomach and bladder, especially I was now incontinent. I could not feel when the bladder was full and the brain was telling me that it now had to be emptied. And I could not empty it without catheters.
 I called to talk to the surgeons about it, but there was no help available! I was initially rejected but later examined numerous times but no one found solutions or something that gave relief.
 It was one of the physiotherapists who called my doctor and complained that the nerve injury should have been taken seriously and treated in time, so the damage had been to treat.
Then I was referred to the urological clinic which started a very long thorough investigation - which among other things, meant small electrical “things” in all possible and impossible (!) places of your body. The damage was found, recognized and treated.


Pain

Everything is experienced through extrem pain - Even sleep - I stop breathing.

Because of suspicion of sleep apnea I was examined by machines that record activity during sleep.

And I stop breathing because of pain. That made an impression on sleep apnea center, so a CPAP mask was hurriedly sent back home with me. It helps so my sleep has been a little better!

There's never a second without the pains and the temperature feels strange, never the same all over the body. The body can never decide if it freezes or burns from heat.

Right leg and foot is always frozen completely stiff and useless and feels like I've stayed in a freezer, while the left leg and lower body glows and burns like I was in a stream of molten lava. After two hours of thorough relaxation and I am completely relaxed and resting, once I breathe I want to scream about the pain the minimal movement triggers! THAT is my basic-pain - my starting point.

All additional things require great self-discipline to accomplish - everything - all activity!

Spinal Damage

The places the sciatic nerves come out from the spinal cord receive continuously, without any pause, pain signals to the spinal cord of acute injuries. All the time. Every second. Around the clock.

Since the back surgery in 1991, my brain is receiving signals that I either have been run over by a train, that there is a saw in my back, or other similar damage.

- Constant

An injury that gives atypical symptoms.

I am very sensitive to vibration, shock and cold

 The consequence is that when I am in a car that has bad springs (in my spinal column’s opinion, anyway) so there is a kind of further compression on my spine.

My spine “breaks down” – like a short due to overload, so I get stronger cramps, a dramatic increase of the pain, a red mist before my eyes, and I throw up, get seizures (the leg cramps can lead to large seizures involving the whole body so I lie and only touch the ground with heels and head, the rest of the body is stretched in an arc as if I am a bridge! My whole body is strained.  On a few occasions I have had seizures that lasted 11 hours straight!

Because of the EDS damage to the attachments in my joints, the seizure attacks make my joints hurt dramatically... I get countless small and large muscle cramps like fiber bursts throughout the body. My hands, especially my fingers will hurt and I can give serious bruising to the merciful soul who will comfort and hold my hand during such an attack!

 



Neuromuscular dysfunction of the urinary bladder without spec.

Before surgery back in 1991 I had no idea what bladder problems were!

Do not think I've ever had more than a few innocent infections.

I became incontinent during surgery. When you get a nerve injury in your back as mine, automatically it will lead to a disturbance to the bladder control.

The message from a filled bladder that needs to be emptied goes to the brain through the spine.

And that signal system is ruined when the nerves are damaged like this.

In addition to being incontinent, I had pain and cramps in the bladder.

I started having to use disposable catheters. Also began to be aware of major problems in the bladder region - pain, cramps, (I did not suspect a bladder could - physically cramp!) It can and it hurts!

I got all sorts of treatments for many years. Injections in the bladder with Bacillus Calmette-Guerin (BCG) Vaccine (sometimes used for bladder tumors or bladder cancer), different kinds of medication for other things whose side effects could be to “bother” a bladder so that it would repaired itself ... etc. etc. ... no positive, lasting effect whatsoever!

I was given up on until two years and five months ago when I had sudden strong bleedings from the bladder. The catheters stopped now and then entirely! Then you bleed a lot! Pain level soared!

The urges increased, both in number and in strength. Urge is when a bladder is filled and they're told that it is filled and ready to be emptied. Normal bladders can be ignored - who does not know to be a place where you do not just find a toilet, and must wait. Then you get a bit restless and jumps a little, steps with one foot, etc. Urges in a diseased bladder can occur even just after emptying! Even when the bladder is has just been emptied!

 My urges are approximately 40 times during a day. They have such strength that I need to control myself not to turn my hands to the abdomen, break down and scream uncontrollably. And is often so violent that I get tears in my eyes, Goosebumps, shaking slightly over my body, I feel my blood pressure rise, the pulse in the temples, a pulsating headache, cold sweats, cramps in the lower body, etc.

 Due to spinal cord injury the message from the bladder to the brain is “disturbed”.

Nothing works - nothing at all!

It feels like a big open wound, every step I take hurts. Whole pelvic area is tight; there are reactions to food and drinks

 I was diagnosed

With Chronic Interstitial cystitis / Painful bladder syndrome. (Interstitial cystitis (commonly abbreviated to "IC") is a urinary bladder disease of unknown cause characterized by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), pain with sexual intercourse, and often pain with urination.)

This condition was determined after a biopsy. I was treated with Gepan-instill first. No effect whatsoever! So, Dimethyl Sulfoxide (DMSO) was also tried in the early 90s. No appreciable effect at the time but eventually it is the only hope left. After the pressure chamber there ARE changes - still big nasty side effects, but there IS a little noticeable improvement, not just random changes, but a weak, lasting change. Unfortunately, I tolerate it so bad one week after intravesical instillation (treatments applied directly to the bladder through a catheter); I am really, really ill.

My bladder is like a big open wound due to corrosive damage in the mucosa protective layer. So urine feels like acid in the open wound! There are strong reactions to food and drink. Again exacerbated symptoms because pain signals to the brain, combined with spinal cord injury. Mucosal injury is one of EDSs characteristics, so the longtime nerve disorder and connective tissue disease has probably reinforced each other.

It has bothered me a lot the last years, and the condition has drained me of my inner resources.

My “inner drive” which is what makes the motivation to continue and what continues for you to have the spark and energy is getting very hard to maintain.  



Ehlers-Danlos syndrome (EDS)

I was born with a defect in my genes in my collagen tissue. It sounds like a very innocent matter - it's probably something with premature wrinkles and sagging skin, you think - until you realize that the whole body is composed of collagen tissue. All tissue, all veins, organs, muscles, joints, eyes, ears, mucous membranes, pleura, bladder.... etc. etc. etc.!

I suffered a lot of twisted joints and weird injuries in my childhood; doctors' response was always it must be something you will grow out of - a kind of “growing pains”

It did not, then after my first education (which was zookeeper, animal trainer) and the first years of very hard physical work at the zoo, animal hospital, etc. I had to look around for another education that was - craftsman! I conceived the same love and passion for the subject as I have for working with animals.

Unfortunately I wasn’t aware of the rare connective tissue disease so it was very hard and caused difficulty especially for my hands, arms, neck and fingers - a lot of overuse injuries occurred

I am the hypermobile type of EDS.

Virtually all my joints are damaged and in much pain.

I have cartilage damage, degeneration throughout the body. A lifelong affair with unexplained pain all over the body stopped when I got the diagnosis.

It was like a big puzzle with thousands of pieces fell into place!

Small and large pieces as for instance why I cannot go to the dentist and be sure that the anesthesia is working or an understanding of why for instance ulcers, are so slow to heal - etc. etc...

All you have traditionally called growing pains now there suddenly was a very reasonable explanation! A great relief and help to have the diagnosis, especially since there are things it is wise to prevent and take care of!

 Complex longstanding / chronic nonaligned pain.

 Post-traumatic stress syndrome

 Pain as a burden for many years gives stress. Lack of peace and quiet, rest and sleep.

Always being stretched max up in pain level is like being under attack constantly.

However, I have been told from several specialists that I have great mental resources such as I (before I got this information!) without knowing it, started to develop different strategies to cope with pain.

Septal perforation

A large hole in the nasal septum

Because of EDS - the destruction of the nasal septum.

Part of the nasal septum’s function is that it heats and adjusts the air we breathe to fit the body temperature. Some years ago mine became so destroyed that I now have a big hole in the middle of it. It is too big for any kind of operation. So the air I breathe is so maladapted and bothers me a lot. Wind, icy cold air and moisture are painful to breathe. And has given rise to a myriad of infections and pneumonia in recent years.

Ulcers in the gastrointestinal mucous membrane - in the entire gastrointestinal-intestinal tract. extremely painful. allows many problems to withstand all kinds of food. provides many daily symptoms, bloody vomit etc. not good when you have EDS and trouble in stopping bleeding!

Chain reactions

- One of the frequent, most exhausting things is starting with a respiratory infection. Get medication for it, I'll usually have prolonged medication period, then I get bad stomach, and then urinary tract infection is almost completely sure! And the last times I have it, in just a few hours I have the infection almost exploding up into to both kidneys - it can take months to kill and it takes longer to get my strength back - and so have I seen it all starts again! ! Maybe just because I have stayed somewhere - a store, a railway station’s waiting room, a concert hall or a cinema or other places where many people are gathered and there is just one with an infection !

IT is frustrating and has happened far too many times - it takes strength I no longer have, so the last almost three years I have consistently had to avoid such places, and really be careful where I go.

It has greatly reduced the number of infections, but with major social implications ... so I have REALLY tried to find solutions that would eliminate the “open door” my nose has become

(There are all kinds of masks and respirators but are all very uncomfortable to wear due to moisture, warmth and more). And none so stable and safe that I can trust it! 

There are many more diagnosis, this was just the most important or "the loudest"! 
Rise Houen

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