Chiari Online Support Group

If you could tell about your Chiari to people who don't understand it what would you say on paper?


#1

If you could write a letter to some one who does not understand Chiari and you must have a person in mind, what would you say?

Dear :

I know you don't understand my condition, so I am writing you to tell you what it is like,

I have headaches so bad it hurts to put my head on my pillow. I cannot sleep because it hurts so bad. If I do not get the sleep I need, I cannot function. The only thing that helps is sleep. It is like someone put my head in a vice and turns it up. The pressure is horrible and it can come on at any time. Heaven forbid if I get a cold or sinus infection, because it makes it 100 times worse. (Think of it this way, if your have a coke bottle and you shake it up, the pressure builds up, and so it does in a Chiarians brain). The Spinal fluid is trapped and cannot push the fluids back and forth from the brain to the spinal cord.

I cannot do the things I once did, so it really bothers me that you think I can. To look at me, I am the picture of health. My make up is on, my hair is combed and I look fine, but I am hurting. You cannot see it. I mask it so well. If I lift heavy objects it makes my neck, back and shoulders hurt, and I am so exhausted afterwords I cannot do much the rest of the day.

Chiari has not only robbed you, but what do you think it has to me? You only know what I am not able to do for you anymore. I am very aware of what I cannot do for myself and my family anymore.

Compression to the brain stem, controls breathing, heart rate and blood pressure. Do you not remember that I have blood pressure abnormalities. Chairi has cast itself in the role of cardiac arrest, respiratory failure, and blood pressure abnormalities. People die with complications from Chiari.

These are some of my symptoms:

Severe head and neck pain, Fainting, blackouts, overheating, (some consider us having mini Seizures)

Difficulty swallowing, frequent gagging and choking, dizziness and vertigo, confusion, brain fog, balance issues, muscle weakness, poor hand coordination, blurred vision or double vision, eye sight is getting worse, hypersensitivity to bright lights, difficulty in tracking objects, tinnitus (ear pain, hearing loss, etc.) Vocal cord paralysis, Hoarseness,Sleep Apnea, lonely and depression, tremors palpitations, rapid heart beat, poor coordination, throat pain, shortness of breath, fatigue, numbness/tingling, burning sensation, neuropathic pain,spasticity, nausea, vomiting, memory problems,Aspiration, Reflux, chronic cough, scoliosis, degenerative disc disease, or a deformity in the spine, and so much more.

Do you know how hard it was to go through years of being misdiagnosed?

People percentages of being misdiagnosed:

Multiple Sclerosis 17%

Depression 35%

Lymes Disease 1%

Chronic Fatigue Syndrome 13%

Fibromyalgia 12%

Carpal Tunnel Syndrome 12%

Menieres Disease 8%

I was diagnosed with Meniere's Disease and was tested several years before they did the MRI.

You say to me, then why don't you get surgery? Surgery is not a guarantee it will help. It is a treatment, not a cure. Some people get great results, and others it makes them worse than before.

The proof of my illness is right there on the MRI, and my reports, my doctors office, and people who really know me.

I am trying to stay positive and find laughter when I can. My faith is what gets me through my day. I have made many many friends who have Chiari just like me, and seem to the the only ones who understand my condition. I have a strong support group. I can count of them to help me get through tough times, because I cannot count on you. You are too self absorbed and self centered to notice my pain.God understands my struggles and he gives me the strength to get through another day.

I did not ask to be born with this. I am trying to make the best of it. I do not blame anyone for my condition nor do I hold any hard feelings. I just want you to understand

I am trying to stay focused and though you may never understand me, I still love you, I still am here for you, and it may be in a different capacity, I am still your ________ I will do everything in my power to make your life as comfortable for you as I possibly can and be the person I know that is pleasing to God.

Please share this with someone who does not understand your condition and add to it.


#2

Abby....Great....I will try to print this out now.....I have to see if i can add anything..but i think you covered it all!!!!

Thank you Abby for always being here!!!!

Love,

Lori


#3

Abby. you explained this so well. It’s difficult for others to sometimes understand because we “don’t look sick”. Until my husband started going to the chiari educational seminars and understood more about chiari, I think he thought I was sometimes being lazy when I set down to rest so much when cleaning or doing anything that required a lot of physical activity. I’m much better since the surgery but I still have my moments!


#4

Well said!


#5

Susan, Of course accepting it doesn’t mean we give up. We have to still keep believing that we can be fixed or at least made better, all the while continuing to get on with our life…WE CAN DO IT…after all we been doing it all of our life!!! Hugs. Shirley

Susan Erickson said:

Shirley,

It does sound heavy but it is absalutely TRUE....For some of us, the Acceptance of this, takes longer than others, some of us when we finally get the diagnosis we've been waiting for it's a victory to have a name for all the suffering we have endured....and can say "This is what I have, I've NOT been crazy" or many other situations.

However, acceptance is a key thing and you explained it perfectly.....Once you accept it is what it is and it's really out of our hands as far as what it will or won't do (we still have to do our part), but once you accept that you have Chiari and what it all means for you, individually for yourself, it does make it easier and the burden isn't as heavy.....You explained it beautifully my friend!!!

Much Love,

Susan


#6

Well said. Its so hard for people to understand . I'm going to share this with my family.


#7

This is the truth…i wish my kids were old enough to really understand all of this. I can play a little but then my heads starts throbbing.


#8

Thank you I am terrible with words my symptoms are a little different I’m going to print this out then make a few changes for myself


#9

Thank you, for voicing for us all, it is very difficult to explain to most people, but so grateful to have people who understand!