My friend Kim over at kimmiecakeskickslyme told me to start writing – that it helps. So I figured I’d give it a shot.
While my posts may not quite meet my former writing standards – this is for me. I’ve got a few followers – but this blog is to journal my thoughts as well as to provide information…..its also one of my many mechanisms for saving info (hence the reblogs)….back to my thoughts.
I am pissed.
Yes, there REALLY IS so much I am grateful for and I’ll write about that soon…. But, lets see if this helps get the anger out first.
I’ve done some self-analysis and a lot of thinking over the past few days – sometimes rational, often-times not but hell, that’s life with Neuro Lyme.
What am I pissed about? LOTS! So here goes! I am pissed:
that Lyme & company are not recognized in the medical community for the most part. But the Lyme Wars are a post for another day;
because I am sick;
because I don’t know if will get better, muchless get well. Some do, some dont.
because I am not who I used to be.
because I am having to figure out who I am now. Yeah a mid-life crisis I suppose – but a medically induced one. And dammit if I was going to have a mid-life crisis it should have been a fun one!
that my non-Lymie friends don’t realize that I wouldn’t be as angry or as crazy sounding on bad days, if I had an outlet – a little bit of normalcy in my life.
because it took almost 4 years of looking for answers to get one.
because I was the one to have to figure it out (with some suggestions from friends I initially ignored as well as some extensive research on my part after my 2nd cardiologist said infectious endocarditis).
at myself because I didn’t listen to my friends who said Lyme long before I listened.
that while a few people actually recognized their symptoms and were diagnosed as well after I went public about Lyme & company, there are so many more including relatives who won’t even consider it (just like I didn’t/wouldn’t initially).
that the doctor I saw when I went to Pri Med in April 2007 about an infected bug bite didn’t recognize the classic Lyme symptoms and never mentioned it.
that there are an estimated 300,000 minimum new cases a year, yet Lyme gets no funding for research & testing (just google Lyme Wars ).
that the government still says Lyme isn’t in the South.
that every time I went to Pri Med and they ran bloodwork, the labs indicated infection and they never contacted me.
that a couple of PCP’s I saw between 2009 and 2011 evidently never ran CBC tests based upon 5 years of records I pulled, even though my insurance provides for one per year at a minimum.
that i had 7 years of lymphocytosis and no one caught it (the word means “bacterial infection”)
that my 1st cardiologist was an arrogant asshole who
1. Ignored labs indicating infection
2. Didn’t submit my full records to my SSD attorney (the 1st one)
3. Has office visit notes that don’t match test results
4. Didn’t tell me I had 3 leaking heart valves – just mentioned one!
that I trusted my former doctors (and very grateful I have a good one now who listens!)
that we still don’t know which infection got my heart because
1. the ID doctors wouldn’t see me (referral from 2nd cardiologist)
2. I don’t have the money for the specialized testing necessary to narrow it down.
that I trusted my first SSD attorney and therefore didn’t review the full file before my first Appeal Hearing (yeah I know – stupid – hindsight and all that jazz).
that I took Chantix to try to quit smoking and it started a series of events that provided an opportunity for my division chief to make me a target (an opportunity he’d been waiting for – and that’s NOT Lyme paranoia)…..and that situation was so stressful that my body didn’t fight and Lyme came out full force….
that the people I was trying to help when the initial incident started at work have never bothered to say anything like “I’m sorry, it started because you were doing your job and trying to get others to do theirs”.
that those same people never bother to say “Hey, how are you? Let’s grab lunch.”…or even call. Not its not their fault….but still….
that I lost everything. My career. My house. My “identity” as a person.
That I never realized until I got sick how much of my “identity” was wrapped up in my career.
That my IQ was 147 the last time it was tested…. and I don’t know if it’ll “come back”.
that over the last 9 months since I found out what this is, only one of my non-Lymie friends took the time to hang out and I felt normal.
that my pets are dead and gone. Partially due to the fact that my family wouldn’t take them when i asked them to.
that when I had my Lyme-induced nervous breakdown, I didn’t get any support from my “family”.
that while I “took care” of things for my sister when she was having her breakdown, with Dad sending the money and me providing the time, I didn’t get any time from any of them. Mitigating factors be damned – your family is SUPPOSED to love you and support you. And no I don’t mean damn money!
that “they” still say I am crazy. Although technically, I am. I definitely meet that criterion. But it’s an infection
- causing that and they won’t even acknowledge that.
that the niece and nephew who I half-raised don’t want anything to do with me.
that my “family” blames this all on the death of my mom 13.5 years ago. Hello – it was a damn tick bite almost 8 years ago!
that instead of blaming my breakdown on Chantix, which is what we thought was the issue at the time (and was an instigator for lack of a better term)……. my father said I’d had issues with relationships in his letter to the SSA – and blamed it on my mom’s death. Hello – what the hell does that have to do with relationships – I guess he forgot the sociopath I lived with in the early 90’s!
that people I considered friends stabbed me in the back and decided I was crazy.
that I have no clue from day to day what’s going to happen with me mentally or physically, including but not limited to:
1. What mood will appear for the day – hell for the hour some days
2. How my brain will function or if it will.
3. What type of energy I will (or won’t) have
4. What my pain level will be
5. What new weird ass growth will appear
that I feel like I am totally insane on the really bad days;
that I was 44 when I found out I had a genetic mutation (MTHFR C677T) which contributed to the successful attack on my immune system by Lyme & company
the ob-gyn never mentioned MTHFR over 10 years of 4 miscarriages- no I am NOT pissed over the miscarriages – everything happens for a reason – even Lyme & company – but I am still pissed;
that the insurance I pay $300 a month for won’t cover even a portion of the $400 worth of supplements I NEED to be taking each month to help my system fight this;
that over the last 9 months since I found out what this is, only one of my non-Lymie friends took the time to hang out and I felt normal;
that the “friends” I was living with for a few weeks back in May didn’t listen when I explained my flares to them;
that I am caught “in between” in the system and therefore I have to choose between a roof or medicine;
that I have actually considered suicide numerous times in the last few years;
that after years of teasing over my lead foot, I’m now not the best driver and therefore don’t drive much;
that from the time I said I had Lyme, my psychiatrist passed me off to his new Nurse Practitioner. Because the psychiatry field in general doesn’t believe in Lyme, or really any organic causes of mental issues in general.
the fact that out of the 15-20 people outside the medical community that I initially asked to write letters of support for my disability claim, only 5 took the time – and that was with nagging from me.
the fact that for the Appeals Council round on my disability, of the numerous people outside the medical community who i asked to do a letter of support/3rd party form, NONE did. Thanks…
I’m pissed that I have Lymie friends that run the gamut from being in their teens and don’t know what it’s like to have a normal teen-age life to adults who don’t know what it’s like to have a normal life at all because they’ve been sick all their lives.
And I don’t know what is worse:
Losing a normal and active life or Never having one.
Because while I have definitely learned some important lessons on this journey…. I still miss me. The old me. The one that is still inside me somewhere….but we don’t know how much will come back.
I could probably go on…But this is enough
For now. Hell for a lifetime.