No Known Cause??

So I haven't blogged in awhile...mostly because I have alot going on in my mind and can't really stop to focus on one thought long enough to put it into words.

Thank goodness it's Spring Break and Summer can't come soon enough. And not for the same reasons most people want them to come. But because my kids are struggling so bad lately with their illness and being well enough to get to school. We are all tired and really need a break. But I will save that for another blog....

I have been thinking of something lately and would like others input. If you have an opinion on why this might be please do share. Feel free to comment on any of my blogs. Pretty sure I set it so anyone can comment.

But anyways...I have been thinking about all of the current illnesses and syndromes that have "no known cause". It's interesting because it seems to me like when the medical community doesn't know what is wrong with you, instead of saying they don't know, they bind a bunch of symptoms together, give it a name, create a drug to help mask the symptoms and then say it has "no known cause"...

More interesting then that is the fact that many people are ok with this "no known cause" instead of wanting to find a cause. I guess I don't get it? Maybe it's because I read so much about viruses and bacteria and how so many of them can trigger illnesses or autoimmune diseases. Or maybe because I am the type of person that always askes why or has to get to the root of the problem to solve it. I guess it's all of the above...

So I have to ask for those of you who don't agree with me...why wouldn't you want to test for these viruses or bacteria? Then you can treat the cause. Is it because your doctor never suggested it? Why is it ok for us to just suffer and take the drugs so that the drug companies and doctors can make more money? Does anyone else think this is messed up or is it just me?? You know there is no money in it for them if it's just simply a bacteria or a virus. Do you know how many natural herbs there are that kill bacteria and viruses?? They don't make money off of herbs...

Why does this bother me so much? Well probably because I know many people who have some of these very same "no known cause" illnesses and I hate to see people have to live like that if they don't have to. Especially kids!!

If you have Fibromyalgia, Chronic Fatigue Syndrome, ALS (Lou Gehrig's Disease) Rheumatoid Arthritis or other autoimmune diseases please do some research on your own. Don't take what a doctor says just because he is a doctor. He is human too. He also doesn't specialize in everything. A good doctor will admit when he just doesn't know what is wrong with you. Unfortunately, I haven't run into many of those kinds.

If I had not done my own research I am afraid to think of where I would be right now. I diagnosed myself (it was confirmed by a specialist and testing) but I made the diagnosis. My arthritis, neurological symptoms and chronic fatigue were so bad I barely left the couch for years. So I used my laptop to researched day and night. I was determined to find the cause. Why? Because I was not living anymore and I was slowly dying if not physically for sure mentally!

During my many years of research I learned so much about the human body and organs and how it all works. I took time to learned a little about every disease that I could find in hopes that one of them would be my answer. If I had not done that my doctor may still be running me here and there for test after test. Next thing you know I'd have 5 diagnosis's for each set of problems. Would be taking drugs to mask the symptoms. When all along the lyme bacteria would have done more and more damage to my body. I might even be in a wheel chair by now! Or worse yet in the ground!

So again I ask why are we ok with this? Maybe its because it's just easier to take the doctors word for it? Maybe it's fear of the unknown? Maybe we just think our doctor knows all there is to know? This is your health people! It's more important then most things in life. If you don't have your health then you really don't have much of a life. If you don't think that is true then I can assure you once you don't have your health anymore you will know it is true! Please don't leave your health solely in the hands of a doctor. Become your own advocate. Educate yourself and inform yourself. This also goes for vaccines (yes another blog topic someday). But inform yourself because you have choices that you may not even know you have.

I can assure you as someone with a chronic health condition that you don't want to live like this if you don't have to. Or worse yet if your child is sick you need to do all you can to help them. I mean move heaven and earth if you have to! Their lives and futures are in our hands and as parents it is our duty!

Please know that I am not judging those that don't think like me. I am simply trying to open the minds of those who don't and will maybe say "hmm I never thought of that!"

I will leave you with this...As I was typing this a commercial came on for Lyrica. A drug to treat Fibromyalgia. So I find it interesting that they can create a drug to treat an illness that has "no known cause". Food for thought....

The mask is coming off!

Some may be wondering what is up with my recent status updates on facebook. Or some just maybe don't care and are rolling their eyes at me or just simply not reading what I say...(Below are the status's that I am talking about)

1st one.. "Just wants to say to anyone who thinks we are faking being sick or our illness isn't serious or who rolls their eyes when I post info about lyme...feel free to come over on a day like today when my child can't walk down the steps due to leg weakness and pain..and while you are at it stick around to take care of him cause I can't go up & down the steps myself!"

2nd one.. "has learned that when you have a chronic illness that many people don't know much about they tend to run the other direction...people who I barely know or haven't talk to since high school have helped me more then some of my own family...wow what you find out when this happens to your family...interesting!!"

Comment from Kathy.. "Can I repost this on my profile... gee. I have had a small heard of people gradually vanish from my life since Lyme hit our family. Almost no one calls to check in, no one comes to help and then a few add injury to insult and question if I have actually been sick and wonder if I have been making it up. Yeah, you learn a lot about people thru trials like this"

My reply.. "Kathy, this is what we are going through too. Some family not believing us either. Or some not thinking it's that bad. Well most don't know what goes on behind our closed doors because they simply don't ask. So I just pretend all is peachy when I see them. Oh how I enjoy that! Not! Some never even said one word to me about it since I told them. It bothers me a lot but I don't say anything. Well I am tired of putting my fake face on and going to parties..."


I actually had about 20 to 30 replied comments on each of these. Probably because I have several hundred friends that also have lyme disease. So if we are faking it then I guess they are too?? Hmmm..that's interesting!

It is sad to me that so many people are sick and I hear over and over again that their family and friends have abandon them or don't believe them or treat them badly or just plain ignore them as if they are crazy! Oddly enough I have never heard of a person who had cancer say that this has happened to them! If this isn't true then please do share with me...

Since I have found out my boys, my mom and I have lyme disease over a year ago it has been shocking that some of our family has abandon us, doesn't believe us, or just ignores us and acts like nothing is wrong. I guess you really learn who people are when this happens to you!

I have tried to put on my happy face when I go to events and parties...But inside I am hurt and very angry and I try not to show it. Well lately it is getting to me and I can not hold it in any longer. I have decided that I need to get it out and what people do with it is not my problem. If people never speak to me again I just can't care anymore!

I can understand that people don't really know anything about lyme disease so maybe for them it is awkward to talk to me about it or to know the seriousness that we are going through. Unlike cancer because if you say to someone that you have cancer they look at you like you are about to die. But I have tried to reach out to people. I have tried to send them information and links to my blogs for over a year. I never get any responses so I just stopped doing it.

Do I expect people to understand what I am going through...NO

Do I expect people to learn everything under the sun about my disease...NO

What I do expect from family and friends is some ACKNOWLEDGEMENT, belief, kindness and compassion! I mean if you were sick I can tell you I'd be the 1st one saying "Hey I read what you sent me and I am very sorry to hear you are going through this! I hope everything will be ok and if you need anything let me know."

IS THAT REALLY SO HARD PEOPLE??? What ever happened to empathy in this world?? I guess I just can't understand because I am so not like that!!

You can't know the feeling that someone with an invisible chronic illness that noone understands has when they have to be around people who have never acknowledged their illness...it is unexplainably uncomfortable! All I can do is smile and make small talk and hope I can make it through the event without having any major symptoms. It feels like an elephant is in the room and noone has noticed it!

So if it seems as if I walk around with a chip on my shoulder now you know why!