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New Year Approaching Fast

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2024-12-14 1:53 PM

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11 years and counting

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2024-10-31 6:49 AM

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Feels like hell week all over!!

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2024-10-30 9:38 AM

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Roller Coaster Withdrawal

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2024-10-14 12:28 PM

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a few new things in my life


7 years ago 0 1044 logo logo logo logo logo logo logo logo logo logo 0
WOW,  Despite the circumstances it is so good to see you again.  Don't inflate my ego too much.  lol  i came back one time not long after leaving here and saw how many times i posted to others.   it was helpful to me on a personal level.  I was long winded back then too.  lol  
 
I have also told many people about this place (not telling them my name).  Although if they know me well, they know i collect goofy things.  1 + 1 = 2  in that situation.   
 
We can't throw in the towel.  (my mantre these days).   i'm just frustrated with the piece-meal medical system.  I am the one who tells each of the dr. what's going on with the other.  I am just frustrated as well as there is not much info on the long term sequela of RMSF.  It's one of those things dr. argue about whether it's "psychological" or not.  lol  It's not.  I talked to my shrink (psychiatrist) about it.  He said if i were one to make up stuff regarding health or exaggerate it, he would have caught on after 15 years of seeing me.  (that made me feel better).  the symptoms or weird and fleeting.  My real gp believes me too.  that makes me feel better as well.  And as I said...he's the one sharing the info that there are long-term effects.  
 
It also helps to hear from you.  I am sorry you are still struggling.  I'm 55 this year.  it seems like forever ago when it started but it wasn't that long ago for me in the grand scheme of life.  
 
We have to dig deep.  It's there, we just gotta hunt for it.  lol, pretend it's your car keys or a 100 bill.  that's more tangible thought.  
Thanks for writing back.  i've got to get through this hump so you'll hear mroe from me.  it's so nice to see familiar faces despite the circumstances and knowing that we still fight arm in arm.   
 
 
 
 
7 years ago 0 1022 logo logo logo logo logo logo logo logo logo logo 0
Hello Goofy! Welcome back!!! I came some time after you... but have come and gone a few times since.  Always... Always refer back to your words of wisdom as an anchor.  You have a legacy here. No doubt in my mind.  I am so sorry you have had such trials continuing in your life.  Silly me, I keep thinking I'll get a handle on this stuff and be able to carry on by myself.  It warms my heart to see you back.  Not that I wish you ill... just nice to have company you "know" and trust in the trenches.  Don't have any words of wisdom or direction for you.   Just admiration at how you carry on ... yet know where to go when you need a bit of support.  I'm 59 and have battled so much too...  I'm very tired and don't know how to bring up any more "fight".  I dunno... it helps to hear from you.  Your words from long ago still inspire so many of us.  I look forward to hearing more from you but it does hurt my heart to hear of your pain.  I hope checking back in at the DC does offer you some lightness and hope... as it does me.  ~m
7 years ago 0 1044 logo logo logo logo logo logo logo logo logo logo 0
I think I've been around this site for years.  Veni, Vidi, Vici then new things would happen and I'd pop back in, re-work a couple of sections, remind myself and go on again.   
 
I was diagnosed with major depression in 2004. My doctor said bi-polar spectrum.  I never got to the other side until about 2 years ago.  That did put a new spin on things but was short lived, thankfully no psychosis, and back to my depressive self.  
 
In 2005 I was diagnosed with Meniere's Disease (MD).  I guess it's been more bothersome than the depression though the psychiatrist says my depression is refractory.  If you look it up on the surface Meniere's has four main symptoms but those of us who live with it know it encompasses more.  It also came along with a great thing called Benign proximal positional vertigo (BPPV).  i think i spelled all that right.  The BPPV has been the thing that has caused  me to fall and injure both shoulders.  I had surgery on one in 2015.  The other I am managing with ice/heat, etc.  The tear is not as severe.  I had injured the left one (surgery) twice.  I didn't have a choice but to get it fixed.   I can't take pain pills (see below) but the pain was sooo much less the day after surgery than the day of the surgery.  There have been other bumps and bruises, sprains and strains and a broken pinky finger but the shoulders have been the worst  of that thus far.  When you are MD dizzy, you know you are dizzy, if you have BPPV obviously changing positions or directions can cause me to tumble  thus the tumbles.  
 
I think it was about 2011, I was diagnosed with Primary Biliary Choloangitis (PBC) which is a non alcohol-related liver disease.  It's another auto-immune disease like the Meneire's Disease.  This is a confirmed diagnosis with a liver biopsy.  Basically, the liver's bile ducts deteriorate over time.  
 
So now i have a psychiatrist, an otologist (ENT), and a hepotologist (gastroenterologist).  I also have had some major issues with menopause won't go in to detail but i see a gynecologist who specializes in getting women through menopause with their parts in  tact.  That is a goal of mine.  
 
Around 2014, i decided to revive a long put away hobby of bird watching.  I liked hiking through the woods with binoculars, a scope,a field guide, etc.  I love the challenge of identifying "new to me" birds and getting birds I've not seen before.   I just like watching birds in their natural habitat as well as my own back yard.  
 
So the next part is I get Rocky Mountain Spotted Fever (RMSF) in June 2016.   Nope, i got the tick in my own back yard not hiking through the woods (which is usually a meandering instead of a hike).  I have to be careful to not fall due to the BPPV. I was so diligent about spraying my clothes inside and out and using bug spray on my body as well.  Tucking in shirts and what-not to minimize exposure to ticks and got the dern thing in my back yard.  Well..enough of that negativity.
 
I finally went to the doctor about 15 days into feeling like i had a flu with some really weird things going on.  I had severe stomach pain and went to see the hepotologist, had an endoscope done and then a contrast scan because my food wasn't digesting in a timely manner thus the stomach pain.  But then it went away and other weird things would happen.  i was feeling like a hypochondriac with a huge pimple on my neck (the actual tick bite).  I had no rash which occurs in most cases.  I got better after taking antibiotics but my lymph nodes became swollen.  So another round of tests, an ultra sound of my neck and the a cat scan.   I have a brain.  I saw it on the CAT scan pics.  : )    So they gave me another round of antibiotics (they give the antibiotics first and ask questions later - it is protocol from my understanding)  RMSF is the most fatal tick disease but only occurs in 5-10% of patients.  I am not in that %age and am grateful.  So after the second round of antibiotics i start to feel okay again.  Still the lymph nodes but what's a chipmunk cheek here or there.  lol  But the symptoms got worse.  I went back to the doctor and he and i have a good rapport.  He got out his info on RMSF and showed me the long--term sequela (fancy word for effects of a previous disease).  Well, don't that beat all.  It causes stomach pain (check), headaches (check), liver problems (see the dr. in March to see how that is going to go along with the PBC) and vestibular (ear) dysfunction.  I see the otologist in March too.  Will find out how that is going to work...because pretty much with few exceptions i have been somewhat dizzy or had full blown MD symptoms since June of last year).  I've become rather dependent on other people.  Obviously this has lead to me being more depressed.  
sooooooo
 
Hello again, it's me your looking for.    
 
sorry so long-winded.  i might add, i am very grateful that these are things i can live with, i know many people fighting for their life (cancer, etc).   

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