You know, I kinda always felt like (pardon my possible insecurity) that I was kind of left out of the club on this message board.
Sometimes I ask a little question and I get like 1 or 2 replies and I told my mom yesterday (before the phone call) that maybe I didn't get accepted into the club because everyone here is really knitted together and I come in, know one really knows me, and I see people get tons of replies to their questions and stuff, and I get 0 or maybe 1 or 2.
I told her that I didn't know that if I rubbed people the wrong way or what, but I told her maybe I should find somewhere else to go because I always felt like maybe I was "butting in".
After yesterday, I felt a lot of support and I really appreciate that.
You know, I'm new to this, maybe I ask questions that have been asked a MILLION times before, but I have so much brain fog and I already feel lost in this nightmare that I would just rather ask you guys (and when I say guys I mean guys and ladies!) because you all are what I consider "well educated experts that have already been through this before".
Sometimes I'm in so much pain and brain fog, I just don't have the gumption to go read and sift for old posts that might pertain to what I want to know. I hope you'll be patient with that.
Like I may have said before, it did say who they were on the caller ID. It was the state of FL. Dept of Inf. on my caller ID.
I do have the phone number. And once I get my brain together, I will call him back. If anyone has any suggestions on what to say, please, please, let me know.
I was worried because this seemed so bizarre that people would call me that you guys would think that I was making it up, so I'm so glad this has happened to other people!
Whoever suggested the recorder idea, WAS A GREAT ONE. I will get one immediately. I decided yesterday, and Oh Lord, how I wish I would have started documenting this injustice and my journey to figure out what was wrong with me BEFORE I even knew I had this diagnosis.
What a story...a story where there is no he said/she said...pure facts. A video camera for me to vent, tell my story, as it happened.
A hidden tape recorder to the ID doctor who said there has never been any Lyme in FL. Or the family doctor who had never met me once who said....it was only anxiety.
This family doctor, the 1st one after I switched because the other one wouldn't CONSIDER THE BITE, just thought I had Lymphoma. I had no symptoms of Lymphoma at the time, nothing. Just ONE swollen Lymph node, right around where the bite was.
She sent me on a wild goose chase of getting ultrasounds of the lymph node (which btw was still in "normal" limits, but yes, it was big). And eventually, I had to go under general anesthesia to get it taken out for biopsy for Lymphoma. (Benign btw)
Lymphoma USUALLY presents it's self in your neck. Under 1% of people with ONE swollen Lymph node in the GROIN area ever turn out to be cancer.
But she put me through the drama, and I can't tell you how that situation tore my life apart. She put that in my head, and I couldn't look at my 2 year old without sometimes literally falling on the floor crying, and scaring him for mama's sake.
Shame on her for discounting my bite that didn't have a "Bull's eye rash".
Sometimes I want to go up there with a TON of information printed out and say, I'm either going to sue you for malpractice because you are uninformed, or you fix me with long term antibiotics.
They say that I read too much on the internet, but THEY need to get online and educate themselves.
That's how I DIAGNOSED MYSELF. I knew it. And I persisted.
Even my own grandpa who is my dad figure because my dad turned into a huge alcoholic when I was 22 and left us, me and younger brothers (19 and 16), who I count on for EVERYTHING. He's one of my best friends.
I called him yesterday again to say HI, like I always do, he basically in so few words thought that I was "losing it" and that this seems too weird to be true. He is 80 years old, so I will cut him so slack.
I talk to to him every week, at least every 2. He's always taken care of me. ALWAYS. He always has given me money, even when I DIDN'T NEED IT. He bought me a nice new brand car, with CASH. Just because he loves me.
Now, when I call, I need his support, and yes, maybe even some help financially (but I didn't ask). In the past 5 years, he's probably spent (including the car) 20 thousand dollars on me...just because he loves me and thinks I'm the most caring, thoughtful person he's ever met.
I never ask for the money. I never ever have. That's not my style, you know? He always comes down to visit from Kansas to see me and just INSISTS that I take a wad of cash, which turns out to be a thousand...or more. He paid for my semi-expensive wedding.
I tell him I don't need it, but he says he loves me so much and he wants me to have it.
Now, because he thinks all of this is too unbelievable, I think he thinks I'm crazy. Yesterday I called, like I ALWAYS DO, before Lyme disease....and I could tell something had changed.
He thinks I'm crazy because you know how 80 year olds are, they've lived their life, they know everything, and are set in their ways.
Our conversations that usually end in "I love you so much baby girl, your papa is here for you no matter what", yesterday, he just said, "Well I gotta let you go....CLICK.
I broke down in tears.
Not only have I and WE been alienated by our doctors, the health system, but I think my family EXCEPT FOR MY MOM, are starting to think this is just too unbelievable and secretly, I think that they think that I'm being weird by telling them about this. I think they think I'm either being dramatic or crazy by believing in this stuff.
It hurts.
No matter what they think, I still do believe. No one will ever change that.
No matter who turns their back on me. My grandpa and I have been VERY VERY CLOSE. And after that phone call yesterday, I feel very alone.
But my mom, she's the bomb. She believes. I showed her the trailer to "under my skin" and she balled and balled. She believes. She says, "I'm your mom, I'm supposed to fix everything, but I don't know how to. She had Hep C, (like I said before, never did drugs, never drank, she got it from a blood transfusion (in the early 80's) when she gave birth to my younger brother) but anyway, she's on treatment for her HEP C and it is much similar to Chemo.
Hair falls out, makes you VERY SICK, she also has heart problems (it runs on that side of the family) and she on Medicare or Medicaid (whichever it is for younger people). She has no money. She makes not even $600 a month.
Once I start to feeling a little better, get an LLMD, etc. I will be an activist about this. I have a LOUD MOUTH anyway! (That's what got me in trouble at school.....and in the military. )
I'm a fiery girl and I can't wait to become that again. This disease as sucked every amount of energy, thoughts, gumption out of me. If I can have a little relief, I WILL do what I can.
I'm going to start documenting my journey with a video tape.
I wish I would have started in the beginning, alllll the money, the time, the doctors visits, I wish to God that I would have known about this before because if anyone could have heard how I was treated, I would send this to anyone and everyone who would listen.
Oh well, this post turned out to be a thanks for the support post, but as you ALL KNOW, I get long winded. I love to write, it's always been my passion. So, please bare with me.
And yes, Betty, I'm sorry, I'm STILL trying to learn how to break up sentences better. I'm not used to that format, but I will continue to try. Remember, I'm still fairly new! But, I'm trying.
Thanks again.
P.S. I'm going to write down that number of that guy now, so I can maybe call HIM UP if I need to.
Posted by seibertneurolyme (Member # 6416) on :
Wow -- you are one tough cookie. And what a journey you have been on !!!
Just don't take it personally if some of your posts only get a couple of answers. Especially this time of year. There are many many newbies right now and so many posts some just get overlooked. Also some people only look at the board now and then instead of everyday.
If you have a specific question that doesn't get answered well enough then wait a few days and ask again. Try to be specific in the subject line so it gets noticed.
As for your grandfather, I would just keep calling like you have always done. In time he may come around.
Hubby had 3 psych admits when he first got sick 7 years ago -- a brain infection like Lyme can easily cause depression, anxiety and other psychiatric symptoms. Lots of medical literature on this. Because of this some of his family members still do not think he really has a physical illness.
Take care.
Bea Seibert
Posted by disturbedme (Member # 12346) on :
I don't always get many responses, I've actually had posts that got zero or only one response. I think it depends on the topic and what people find interesting enough or important enough to click. That, and if they believe they have anything to add to the convo.
Posted by hiker53 (Member # 6046) on :
Nessa,
All I can say is that I am praying for you like I pray for everyone on this board.
Being single, I understand where you are coming from. I know how much my 80+ years parents worry about me and question my treatment, because they don't fully understand how their middle aged daughter who used to be so full of energy, athleticism, and life can now be so sick.
Your grandfather probably just didn't know what to say, but that doesn't mean he doesn't still love you or care.
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