#VisibleWeStand

#VISIBLEWESTAND : AN INTRODUCTION

*Click the link above for details about the #VISIBLEWESTAND movement. 

Please spread the word about this wonderful way to bring much needed awareness all invisible illnesses. If each one of us posted this on our blogs we could start changing the way the world sees invisible illnesses and empower those of us that have one or more illnesses. 

A big shout out to Tracy aka SpoonieMom for having the courage to start this whilst battling her own invisible illnesses.

#VisibleWeStand

1. Please introduce yourself by whichever you feel comfortable (Name, initials, nickname, etc) and if you feel up to it, share a photo!

You can call me Kahlan222 or just Kahlan.


2. What diagnoses have you received, if any? Many chronic illnesses take years to diagnose, so if you haven’t reached that milestone yet, you can simply leave it as undiagnosed.

When I was a baby I was severely allergic to pretty much every food. I also had febrile seizures until the age of two.

During my teenage years I pretty much “grew out” of most of my severe food allergies. I did retain sensitivities to a handful of foods. Had IBS and was diagnosed with clinical depression. 

My current list of “diagnosis'” (I put that in quotes, because so many of them are exclusion diseases. Meaning there is no test for them, your Doctor just eliminates the other possible causes before coming to that diagnosis)

  • Treatment Resistant Clinical Depression with Anxiety
  • Chronic Fatigue 
  • Fibromyalgia 
  • Chronic Migraines 
  • Cervical Spondylosis
  • Occipital Neuralgia 
  • Sciatic Nerve Damage 
  • Piriformis Syndrome 
  • Spinal Stenosis caused by Osteophytes on L5 & S1 vertebrae
  • Herniated and Bulging Discs that caused a hospitalization last year and is responsible for torn cartilage in the back of my left calf / knee that is still healing
  • My Natural Doctor feels strongly that I have Lyme (I do believe this is very likely a possibility)
  • Retroverted Uterus
  • Endometriosis  
  • Ovarian Cysts 
  • Various Food and Chemical Sensitivities 
  • Keratosis Polaris (self diagnosed)


3. For those who might be unfamiliar with your illness, please tell us a little about it and what kind of symptoms you face.

Since I have so many diagnosis to list…I have chosen to just share the generic definition and symptoms…my goal is to make a post on each one/two and go into further detail on how each has affected me personally.

*Click on any of the medical conditions to be taken to their respective Wikipedia pages.

Febrile Seizures: These are non-damaging seizures caused by a very high fever. When I was little my fevers would spike as high as 103* +. 

IBS (Irritable Bowel Syndrome): Irritable bowel syndrome (IBS) is a common disorder that affects the large intestine (colon). Irritable bowel syndrome commonly causes cramping, abdominal pain, bloating, gas, diarrhea and constipation.

Clinical Depression: This is a condition where your brain doesn’t produce, on it’s own, the normal chemicals needed to maintain a balanced mood. The symptoms are the same as any depression:

Treatment Resistant Clinical Depression with Anxiety: This is a fancy way of saying that you’ve tried at least two treatments/medications and your symptoms are still not well controlled. 

Anxiety is described as an unpleasant state of inner turmoil. A lot of the time it doesn’t have an exact cause.

Chronic Fatigue: They don’t know exactly what causes this disease but it’s symptoms include being tired after exertion; unrefreshing sleep, widespread muscle and joint pain, sore throat, headaches of a type not previously experienced, cognitive difficulties, chronic and severe mental and physical exhaustion.

Fibromyalgia: Is a disease characterized by chronic widespread pain and a heightened pain response to pressure. Other symptoms include fatigue, sleep problems, and troubles with memory. Some people also report restless legs syndrome, bowel or bladder problems, numbness and tingling, and sensitivity to noise, lights or temperature.

Fibromyalgia is frequently associated with depression, anxiety, and posttraumatic stress disorder. Other types of chronic pain are also frequently present.

Chronic Migraines: Typically, the headaches affect one half of the head, are pulsating in nature, and last from two to 72 hours. 

Associated symptoms may include nausea, vomiting, and sensitivity to light, sound, or smell. The pain is generally made worse by physical activity.

Cervical Spondylosis: Is a broad term meaning degeneration of the spinal column in the neck from any cause. If severe, it may cause pressure on nerve roots with subsequent sensory or motor disturbances, such as pain, paresthesia, and muscle weakness in the limbs.

Occipital Neuralgia: Is a medical condition characterized by chronic pain in the upper neck, back of the head and behind the eyes.

Sciatica / Sciatic Nerve Damage: A medical condition of pain going down the leg from the lower back. This pain may go down the back, outside, or front of the leg. You may experience lower back pain, weakness or numbness in various parts of the leg and foot and pain.

Piriformis Syndrome: Is a neuromuscular disorder that occurs when the sciatic nerve is compressed or otherwise irritated by the piriformis muscle causing pain, tingling and numbness in the buttocks and along the path of the sciatic nerve descending the lower thigh and into the leg. 

Spinal Stenosis caused by Osteophytes on L5 & S1 vertebrae:

Spinal Stenosis is an abnormal narrowing of the spinal canal that may occur in any of the regions of the spine. This narrowing causes a restriction to the spinal canal, resulting in a neurological deficit. Symptoms include pain, numbness, paraesthesia, and loss of motor control. Mine was partially caused by Osteophytes which is a fancy name for bone spurs (extra abnormal growths of bone) on my L5 & S1 Vertebrae which you can see in the image below. 

Herniated Discs: Also known as a slipped disc, is a medical condition affecting the spine in which a tear in the outer, fibrous ring of an intervertebral disc allows the soft, central portion to bulge out beyond the damaged outer rings. This tear in the disc ring may result in the release of inflammatory chemical mediators, which may directly cause severe pain, even in the absence of nerve root compression.

Bulging Discs: Are basically the precursor to the above mentioned Herniated Discs. It is where the disc bulges but does not rupture. 

Torn Cartilage in the back of my left calf/knee: Common signs and symptoms are knee pain and swelling. These are worse when the knee bears more weight (for example, when running). Another typical complaint is joint locking, when the affected person is unable to straighten the leg fully. This can be accompanied by a clicking feeling. 

Lyme Disease: Is a very complex disease you could probably spend most of your life studying it and it’s multitude of co-infections…but here is a tiny nutshell version… early symptoms may include fever, headache and feeling tired. If untreated, symptoms can progress to basically anything you can think of (I’m not joking). Also, the longer you have it the more likely it is that you will never fully recover.

Retroverted Uterus: Which is a uterus that is tipped backwards towards the spine. This can cause an increase in lower back pain and cause periods to be more painful.

Endometriosis: Is a disease in which tissue that normally grows inside the uterus grows outside it. It can spread, not just outside the reproductive organs, but also all through the bowls and up into the diaphragm. Severe cases can lead to hysterectomies. The main symptoms are chronic pelvic pain that may get worse during menstruation and infertility. Pain during sex is also common. Endometriosis can have both social and psychological effects.

Ovarian Cysts: An ovarian cyst is a fluid-filled sac within the ovary. Often they cause no symptoms. Occasionally they may produce bloating, lower abdominal pain, or lower back pain. If the cyst either breaks open or causes twisting of the ovary severe pain may occur. This may result in vomiting or feeling faint. The majority of cysts are, however, harmless.

Various Food Sensitivities and Chemical Sensitivities

Food Sensitivities are a detrimental reaction, often delayed, to a food, beverage, food additive, or compound found in foods that produces symptoms in one or more body organs and systems, but generally refers to reactions other than those of a food allergy.

Chemical Sensitivities are a chronic medical condition and syndrome characterized by symptoms that the affected person attributes to low-level chemical exposures to commonly used chemicals. Commonly attributed substances include scented products, pesticides, plastics, synthetic fabrics, smoke, petroleum products, and paint fumes. Symptoms are subjective and vague. Symptoms are also non-specific, meaning that they are common symptoms, such as fatigue or headaches, that are present in hundreds of other illnesses. Commonly reported symptoms also include nausea, dizziness, and inflammation of skin, joints, gastrointestinal tract and airways.

Keratosis Polaris (self diagnosed): Keratosis pilaris is caused by a buildup of keratin, the protein that protects skin from infections and other harmful things. The buildup forms a plug that blocks the opening of a hair follicle creating bumps.

The bumps are often light-colored. They usually appear on your arms, legs, and buttocks, sometimes with redness, swelling or itching.


4. What kind of challenges or obstacles have you faced since becoming ill, and how were you able to overcome them?

The most difficult challenges for me have been losing my ability to accomplish tasks. From the most simple, like showering, to things like cleaning a dirty room or moving heavy boxes.

I was always the one who would step in and get stuff done. Now it’s painful as I lay in bed (ironically in physical pain) and know that we don’t have anyone else to do those things. 

Also, my weight gain from the medications I’m on. I was always a steady weight I was “happy” with. Finding myself with so few clothes that fit and the realization that with body pain comes the inability to wear things like jeans (I can wear them sometimes), fitted clothes and shoes with heels.

And, of course, that which a lot of us face…the negativity and ignorance of our illnesses and medications we take.  

I have to be honest, other than trying to practice being gentle with myself and learning my limitations (and not pushing past them!) I feel like I’m still a very long way from overcoming most of my obstacles. I try to take it a day at a time while continuing to try to find answers and treatments.


5. If you could ask the Spoonie community for advice on one
thing, what would it be?

I would ask for tips on staying positive and what methods have been successful for them in finding treatments and caring doctors.


6. If you could send a message to the healthy community, what would you say?

Just as we all say to children…appreciate what you have. Take time, real time, to enjoy the small things in life. The ease at which you can take a walk and enjoy nature. How you can lay down and be comfortable. The ease at which your body responds to your commands. It really is a gift and, no matter how cheesy it sounds, you don’t know what you have until it’s gone. So take it from those of us who have lost it…Savor Life

7. What inspired you to participate in the #VisibleWeStand movement?
I strongly believe that the more we can understand each other the better the world will be. 

Invisible Illness awareness is so important, because without the understanding of the healthy community we stand in darkness ashamed and misunderstood. 

If people understood even a little bit of what our lives are like it would make it easier for a lot of us to exist in the world.


8. If you could go back in time and give yourself advice when you first got sick, what would it be?

Looking back, I can see the slow increase of stress that led me to my breaking point and some times early on in treatment where I wasn’t a strong enough advocate for myself. 

Therefore I would tell that last self to get out of that situation much earlier. Perhaps I could have saved myself the severity of my illnesses or avoided the breakdown altogether.


9. What, in your opinion, can we do to further promote chronic and invisible illness awareness?

Exactly what we’re doing…but keep going. Stretch out to more areas. Utilize more social media outlets. Also, if I had one idea….we need one banner. If we could unite as many of these smaller groups as possible under one umbrella so to speak it would make it much easier for people to find information. 

Have a single community. With forums for communication. Areas for the ill and the healthy. A place where you could find information (both personal stories and standard information) on any invisible illness.

I think I’ll make a post on this. To see how many people might be interested in starting something like that….


10. What advice would you give to someone who is afraid to disclose their illness because of the
stigmas that Spoonies often face?

I think disclosing your illnesse(s) is a very intimate and personal choice. To me it does depend a bit on the person and situation. 

For me, I try to feel out the person. Are they normally empathetic to your feelings or are they all business all the time? My next criteria is if I feel it’s important that they know. So, if you’ll need to wear sunglasses at work due to migraines, they will probably need to know. 

There will always be people who will think you’re faking your symptoms. If you can, keep them at a distance. You are not some kind of horrible person and deserve respect and kindness from those around you, regardless of your illnesses (or lack there of). 

Try to surround yourself with as many supportive people as possible. Having that group of support will help you deal with the “non-believers”.

Advertisements

5 thoughts on “#VisibleWeStand

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s