posted
i am trying my best to let others help me as i am really ill but my family is going round and round in circles and now my mother is saying she is having a hard time believing in the whole chronic lyme thing and is thinking the llmd's are a cult trying to get money from innocent desperate people.......
we have tried to convince her to watch under my skin and have sent her articles on the controversy and she said she doesn't think it will sway her thoughts and is not interested in seeing it.
my mother in law is saying she does believe in chronic lyme but that that might not be what i have because i am not getting better..she does not understand the controversy and feels I should look for the best diagnostician to find it yet noone has the ability to take me to them.
I also know that I KNOW what I have...I feel more at home here and with other lymies because we have all symptoms in common and this is the disease that fits best with my symptoms.
I am not getting better large part due to lack of family support in helping me when I am ill and also because we cannot afford the drs anymore
Meanwhile, we are in florida temporarily trying to get help and be closer to family and are planning a permanent move in january..however....my husband has to go back to arizona to get stuff settled for the move...my parents will not come down again until our move date..my mother in law will not take care of me during that time because she feels MY parents need to step up to the plate
My parents are either in denial of how ill I am or are just concerned with themselves because they are unable to get down to florida until our move date and my entire family is saying don't worry..let us take care of you...meanwhile...i am the one that is doing mostly everything I can for myself because my family is forgetting to make sure i am drinking, taking my meds regularly, not walking around too much, etc and their answer to everything when I am ask is "wait a minute" or "we'll work it out" and never do
So...everyone is telling me to relax and not to worry and there is even more crap doing on but i cannot help but worry because the people that are supposed to be helping to care for me are going around in circles and neglecting me more than anything.
Hope I broke this up enough..I am just so upset..both my mom and mom in law want me to start with new drs and forget about fixating on this lyme thing to try to figure out what is wrong with me when I already know and my husband is not only stressed beyond belief but is at some times my best advocate and others he just also neglects me and says he is working and cannot help me so i am left alone as i have gotten worse over the past few years....
I have begged him to get help for not only me but also for himself as a caregiver because we just couldn't do it on our own and now he finally realizes that 3 years later but refuses to take responsibility for how ill i have gotten and not asking for help before.
Also, my mom says I have not come to emotional acceptance of my disease and just have to be happy (she is equating it with her illness which is well understood, treatable and has tons of support and funding)....and i said in order to come to acceptance that I need everyone to try to come to acceptance and try to make thingd easier for me rather than blame me or get upset with me when., say, i lose a bill because of my cognitive issues, or when I am totally dehydrated because i forgot to drink, etc
I feel like I am in a battle with no answers and no support and honestly, they say I am the one with the cognitive issues (i do have bad ones) but i am the only one who GETS it and i cannot leave my care in the hands of others who do not understand this disease or even believe in it or that I even have it...
As for seeing all new drs, i am to the point where I have been traumatized by drs and have seen over 100 and starting again with new ones to try to find out what is wrong is going to further add to my depression, anxiety and frustration because i know they are going to come up with nothing, just like all the other ones did except for the llmd's.
Thx for listening and I will respond to some posts when i get some more energy. Right now, I need to drug myself to sleep so i can escape this nightmare and i am up all night and cannot sleep and even with ambien, valium, etc i stillcannot sleep.
xo my lyme friends talk later
-------------------- Sick for 20 yrs+,dx'd 10 yrs ago fibro/cfs & hashimotos.dx 4 yrs ago w/neurolyme,recent adrenal failure, recurrent spinal cord injury,probable ankylosing spondylitis. Unable to get treatment & severe Cognitive, psych & physical symptoms progressing. Posts: 82 | From az but moving to ft lauderdale, florida= plantation. fl | Registered: Aug 2009
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posted
I'm again very sorry that you are going through this. I can't imagine the stress you are under. It's no wonder that you can't sleep.
I see no need for going to other drs if you have been clinically diagnosed with Lyme. How did your Western Blot turn out?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
When it comes to your health, I wouldn't do anything to please family members. Your health is your responsibility. It is your decision in what direction you go with it, not theirs.
If you have a clinical diagnosis for LD and if you have symptoms of LD, then why would you want to start over looking for a diagnosis?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I'm sorry you're going through this. Are you sure a move closer to your family who doesn't believe you is the best thing? Might it not cause more stress?
My extended family, except my dad, didn't really believe me either. I had to cut off ties to quit worrying about pleasing them until I got better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Your story sounds identical to mine. I have been through a living hell!
Been deathly ill for years, have had open heart surgery, and my family still doesn't care like I need them to. U have pretty much cut all ties because I have found it does not hurt as bad.
Can you PM me and let me know what area you live in in FL-we might be in same area?
I would also like to stay in contact with you.
Posts: 303 | From Jekyll Island, GA | Registered: Sep 2008
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posted
i will be living in plantation...the worst is my parents and thank god they only have a seasonal condo there..they don't live there permanently. As for not going with my gut about my diagnosis it is because my husband and i cannot do anything without support because i am so ill and he is working full time plus to keep a roof over our head and we have no way to get me to drs that are not close by or don't take insurance.
Believe me, i wish I could cut ties with half my family but i will say..my sister and I do have a pretty good relationship and her kids (my nieces) put a smile on my face all the time
My situation is kinda like my only supports right now are hurting more than helping but i cannot live on my own due to my cognitive issues and severity of illness and the only people I have to "count on" are also making me sicker from stress. It's a catch 22 and a living hell.
Astria gonna pm you
-------------------- Sick for 20 yrs+,dx'd 10 yrs ago fibro/cfs & hashimotos.dx 4 yrs ago w/neurolyme,recent adrenal failure, recurrent spinal cord injury,probable ankylosing spondylitis. Unable to get treatment & severe Cognitive, psych & physical symptoms progressing. Posts: 82 | From az but moving to ft lauderdale, florida= plantation. fl | Registered: Aug 2009
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posted
btw...i was diagnosed clinically and with positive igenex test by dr h in NY. I know I have lyme..it's a mattter of what else I have in addtion..i also have spinal cord injury..sustained 3 in 2 years, adrenal failure (almost died from that)and severe thyroid disease...and now possible pernicious anemia.
-------------------- Sick for 20 yrs+,dx'd 10 yrs ago fibro/cfs & hashimotos.dx 4 yrs ago w/neurolyme,recent adrenal failure, recurrent spinal cord injury,probable ankylosing spondylitis. Unable to get treatment & severe Cognitive, psych & physical symptoms progressing. Posts: 82 | From az but moving to ft lauderdale, florida= plantation. fl | Registered: Aug 2009
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posted
Moving another Lymebrained post here to avoid confusion.
AL
sorry for the long other post...just wondering your thoughts on whether i should start all over again to try to see what is wrong (even though I know) and i am traumatized by drs.
Thanks all!!
Posts: 127 | From USA | Registered: Oct 2009
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posted
Just try and take the perspective of others around you... The jury is still out on chronic lyme disease as I'm sure you know, so it is of course going to be very hard to convince your family that you may truly be sick with chronic lyme disease. Just try and concentrate on getting better and curing the borreliosis, which I truly believe is curable in my mind... that is most important. If you have active borreliosis, you need to focus on your antibiotic treatment
Posts: 12 | Registered: Apr 2004
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