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On my Soap Box..........

posted 4/27/2010 12:26:44 PM |
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I am sure many of you are tired of hearing about my illness but Girlcountry's blog has put me back on to my soapbox about Lyme. Not saying that GC has it, but many people put off going to the doctor because the symptoms of many diseases are so vague they think there is nothing wrong. So I decided to blog today about Lyme. So I guess you could say this is a PSA for all AMD members.

When I first started to get sick, my only symptoms were fatigue, my hair was starting to fall out, I just didn't give a royal monkey's ass about anything. I thought that maybe I was going thru some depression so I put off going to the doctor. When it got to the point that I was lying in bed a majority of the time thinking that if I died at least I would feel better, I finally got scared enough to go to the doctor. Lyme never came up in the discussion nor was I tested for it. Had I lived in MN at the time it would have been the first thing that was tested but a lot of doctors in Ohio still feel that Lyme Disease is not something that is a problem in Ohio. How wrong they are........its a problem everywhere.......tho some places are considered a lower risk. A study of where Lyme has been diagnosed that was ran through 2007 located here will show how the number of cases of Lymes has increased and if the study went further you would see where its risen to an even high count and most states are at risk.........the reason for it is that doctors are now testing more readily for it and less cases are being misdiagnosed.

My intentions for writing this blog is not to quote statistics........its to tell you about my symptoms and maybe someone here will might find that what I went through is some of the same things that they are going through. If I can prevent one person from getting to the point I am than its worth the time to write this blog.

As I started out with fatigue, hair loss, depression soon it was followed by getting words mixed up. Oh I blamed it on getting old........but when normal words that I used all the time were suddenly words I couldn't use..........I would know the definition but not the word.......for instances.........If I wanted to say the word intelligent, it wouldn't come to me.........I would know that I wanted to say something that meant really smart but it wouldn't come to mind.........or I would interchange words that sounded familiar..........One time I was trying to tell my kids during my move to be careful with the marble top to my bakers rack and what came out was to be careful with the adorable top ..........sometimes I sounded like a babbling idiot.

There were other things, like suddenly I couldn't stand drinking coffee.........this coming from a person who use to drank 8 pots of coffee a day............and I started craving bananas which I always hated.

Than came the pain. I think I could have handled all of the rest of the shit that was going on in my life but when the pain started it was horrible. Suddenly walking to the bathroom was a major move. For a list of symptoms go here. This is not a full list, when my specialist had a list for me to fill out there were 108 symptoms..........I had 102 of them. I was lucky though, although this disease can do permanent damage to major organs, (and so can the medicines given) my major organs were not damaged.

I was misdiagnosed and untreated for a year and a that time I had a hysterectomy (which I needed anyway......but they blamed my symptoms on that) I lost my husband so I put some of the depression on that, I was told at the beginning it was just job stress so I quit my job........things did not get better. When the pain finally got to the point I could no longer take it, I went to a doctor here and was tested for Lyme. When I had two positive tests and had started to have moments of black outs I was sent to a specialist who had my blood sent to the laboratory in California that does the test on enzymes. I was told I had the worst case of Lyme that the specialist had ever seen. I was put on antibiotics that make me throw up twice a day that finally cleared the lyme. BUT and this is the real sad part..........

When Lyme goes untreated for a long period of time even after its been cleared it will have caused an auto immune disease that is incurable and the symptoms can only be treated.

continued in comments

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Apr 27 @ 12:27PM  
Today I take a lot of pain meds, antidepressants, high doses of Vitamin had cleared my system out of so much Vitamin D that the first week I had to take 10,000 units a day to get it up to an acceptable level. I had fiber myalgia prior to getting sick but it never bothered me to a great extent.........due to the fact that the symptoms mirror the same as Chronic Lyme.........I take meds that could actually cause me to have seizures.......and I have minor tremors a lot of the time. There are days when I have to have my daughter propped pillows under my legs cause the pain is so bad, and I am unable to walk very far.......without the use of my cane and even then a block would be to far to walk. I hurt in every joint but my knees, hips and ankles are affected the most. I have my computer set up so I can set in my recliner because even sitting at a chair for more than a couple of hours puts me into even more severe pain for days. Due to the chronic fatigue riding in a car for any length of time makes me sick, physically.

I do push myself......I hate just sitting in a chair all the time, and I think my boyfriend would find me totally boring if I did......but he knows that I have limits and so we don't go out much choosing rather to stay in and watch movies or play cards. The things we want to do ..........we figure out ways to make sure that I don't over do it too much......for instance we are planning on going to a Twins game this summer........and he has been talking to them about how to get me into it and being able to sit without having to worry about where we will put my wheel chair and so on. I am fortunate.........I have a boyfriend who loves me and accepts me for me........handicap and all.

I am not writing this blog for sympathy. As bad as it gets sometimes I am a lot luckier than a lot of people. I may not be able to pick up my grandson and walk around the house with him but I can hold him and snuggle with him. I may not be able to go out and play outside with my granddaughter but I can play with her and teach her things. I am still alive and I am most grateful to God that when I laid on that bed, in the earlier stages and begged him to let me die.........that he let me live and for that I am grateful.

My reason in writing this is I hope that anyone who reads it checks out the sites I listed, that if they or someone they know has any of these symptoms that they will go to the doctor and demand to have a Lyme test. (some places you have to demand because they will not even consider it) Also remember just because you haven't been out in the woods, or seen a tick on you, this could still happen..........don't just think that it will go away............and whether its Lyme or something else..........its always better to be safe than sorry.

Apr 27 @ 12:31PM  
Good blog, Dayna! Kudo!

Apr 27 @ 12:34PM  
Yes, it is always better to be safe than sorry.

Thanks for a wonderful and informative blog.

Apr 27 @ 1:08PM  
ahhh so you were writting THIS and THAT'S why you ignored my IM..ok your excused ....

Apr 27 @ 1:09PM  
MRSA will do much the same thing.. and I know this from personal experience. I still have swelling and pain in my joints and back that are undiagnosed but are residual from my MRSA experience. if you are feeling off.. get yourself checked out before it's too late. BTW.. due to my MRSA I am now a diabetic and may have a heart condition as well .. won't know til I have insurance enough to get checked out.

Apr 27 @ 1:44PM  
Thx for the info!!!!

Apr 27 @ 3:57PM  
Thanks for the info..

Apr 27 @ 5:12PM  
I tried to get in my soap box once & that didn't work so I got on it & it dissapeared. I'm not telling where it vanished to.

Apr 27 @ 6:30PM  
I'd rather see you on a soap box any day compared to lots of other people... I mean a sheep in red heels has gotta be the BEST thang ever!

Seriously, you've done a great service by providing personal testimony concerning a disease that is too easily overlooked. Thanks for an excellent PSA... and a greenie for it too!

Apr 27 @ 11:22PM  
Great blog and something that everyone needs to know this time of year. Kudos for posting it.

Apr 28 @ 12:32AM  
Hope you are having a good day today..........

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On my Soap Box..........