I am going through hell right now for those of you that might have read some of my posts...and i have written about my family issues before and many have told me to cease contact with them but unfortunately i am unable to take care of myself due to severecognitive issues and i am forced to hsve them in my life..i do not qualify for any housiung programs in which they would help care for me.
my family members (who have not accepted this disease themselves and deny my limiations all the time) said i need to come to emotional acceptance of this disease and where i am atin my life, which is pretty much deteorating over the past 4 yrs..
been sick since early 20'sand now 37 and i have no friends, lost my house. cannot engage in any of the things i loved to do due to lack of money and also feeling so sick, family who doesn't understand and keeps some who do not even believe in chronic lyme and one who does but says she doesn't feel I haveit
They say not to live my illness and to be happy with what I have and then of course the lecture about how people have it much worse than I do and still cope. (For the past few years, my husband has been very unavailable to me so i had to do things on my own..sick or not and i got sicker as a result.
I told him for years we needed to get help for me that we couldn't do it ourselves so far from family or without any services or assistance.
As many of you, I have lost my life to this disease and my quality of life is almost non existent..i can no longer work, drive, alternate between walker and wheelchair, am too confused to go out on my own or drive, so i am homebound all day long and all night since hubby works constantly, I lost the ability to sing due to a spinal cord injury we believe caused by lyme,
i cannot have children, i cannot maintain friendships because most of them dropped me or cannnot initiate new ones because of lack of energy,
i have fallen about 20 times in the past few weeks and have gotten dehydrated and wound up in hospital er more han i can imagine (I also have spinal cord injury and adrenal failure..i need to drink even more so because my electrolytes go down pretty uickly and have to be VERY careful with falls.
I fell trying to do things alone because my family members were non observant or kept saying one minute when i really needed something asap and it was either do it on my own or not get it done (like getting to tthe bathroom.i peed on myself about 5 times because i couldn't make it to the bathroom becauseof c0mbo of irritable bladder, permanent deficits from the spinal cord injury and mostly.....inability to walk at the time and get to bathroom included. i forgot to drink..i lost my thirst response and family was asked to remind me to drink..
meanwhile i can go an entire day of not rinking and they wouldn't even notice...when i took my huge fall on my back...my mom saw it (and heard it) from the other room and just askedit i was ok...i have severe degenerative disc disease and have had 3 spinal cord compressions almost paralyzing me over the past 2 years so a huge fall like that could have done major damage..
i asked that i thought wes hould have it checked out esp due to the severity of the fsll and my medical history of spinal cord problems..and she said..oh i am sure you will be fine.
husband and i are about to file for bankruptcy and may not have a place to live if he gets fired, which is a strong possibility due to the amount of time he has had to take off to take me to drs appts and putting his job in jeopardy....
meanwhile my family hasn't accepted this disease themselves and still expect the same of me as when i was not sick so i need to push myself to no end because if i don't do my share of the "work" or if I need to sleep or am symptomatic, mom says i slept enough already and shouldnt be tired.......
or that it is all stress contributing to my getting worse and they keep telling me i need to get out for s bit to make me "feel better" and she says "you say you are always isolated but never want to go out" when i am falling over my feet and near collapse.
shall I mention...i was going downhill for a long time but it got worse a few months ago after going on very high dose steroids and my husband claims he didn't realize what steroids do to lyme patients no matter how much he had claimed to read about lyme disease and most redently.....
i declined even more abruptly to the point of the worst confusion and cognitive issues and pain ever and that was all after i was around my sister's dog who i found out was infested with fleas and there are also a ton of stray cats roaming in their backyard and having contact with their dog, who was kissing and licking me. Sound like a coincidance??? i brought it up with both husband, sister, and mom and they both thought i was just grasping at straws and that it was highly unlikely
I can go on and on about all the losses I have suffered from this illness...which many of you have been too..point is...how do you come to emotional acceptance of something that has literally affected every aspect of your life, you have little to live for,your only family that can advocate for you because of severe cognitive issues and inability to get out myself are in denial themselves, and they still expect the same of you and have no understanding of your illness???
on top of everything..when i tell my family i am getting worse and worse and can possibly die from this disease, they say i am exaggerating and I'll have to do what I have to do. when I tell them I am unable to think straight enough to make phone calls to take care of my own healthcare and get the servicesI need desperately, they just say do the best i can.
My mom has chronic illness but one that is well recogniezed, supported, etc and she has paid nothing out of pocket for her care and there are drs gallore that treat it.
She thinks the llmd's are in a cult to try to get money from us and refuses to believe they are fighting for us..she also watches dr oz and reads lay articles all the time and she says she knows people who have gotten wellfrom this disease..maybe 5...i know thousands who are not well and have been fighting for their lives for years wit this..including me
My mother in law says she believes in chronic lyme but doesn't think i have it and that my husband and I have been way too fixated on it for the past years and feels I should go to like a mayo clinic or try to find the top diagnostician to find out what is really wrong with me
So..with all that said and with all the losses i and others have faced and withthe fact that i am still expected to function like a normal person with a body that is falling apart and a brain that is broken, as i say, how the heck am i supposed to emotionally accept being like this indefinitely...
Oh..since I most likely cannot get treatment for this due to lack of money or someone to get me there...and if i decline further with little chance of getting well or my famuly cannot care for me anymore if my illness progresses as they can barely can for me now,
Some of them said we wil need to consider nursing home placement ;( Guess if you don';t have tons of money, a non complicated case of lyme...mesning no other serious medical problems...and unless you have astrong family support system to try to think of anything they can do to help you..you are pretty much screwed with this disease....as am I
and i know i will die eventually from it without any treatment as i have only been getting progessively worse...
but again,...everyone says be happy and stop being so impatient, living my disease and predicting the future and as my mom and mother in law say "noone dies from lyme"..thank god it is not terminal.
btw..i fsiled to mention that my supports are not going to help me find a dr to treat this disease and hubby and i are broke and he will not consider any treatment that is not covered by insurance, which we know is hard to come by (understatement)
Huby and I also agreed that if I cannot get treatment or don't improve, I at least need to have a personal assistant come in and help us and also help to get me out so i am not homebound all day long, as well as a therapist that treats lyme patients who can work with me over the phone (it is not covered by insurance)but i am too ill to go to a therapist regularly and noone to take me anyway..
He is now going back on his word and the one promise to me he made if we couldnt afford treatment and i had to live like this or get worse..i am pretty bad now was that weget some companionship for me and help for us to take the stress off our relationship and to allow me to speak to someone professional over the phone who will help me cope
as i csnnot use my family as my sole support..it is not healthy in general to not have outside people to talk to but..but especially when the support makes you feel worse.....
either way...i have no friends and i really do need to speak to someone professional and now he is going back on his word but yet him and the rest of my family just want meto be happy and stop living my disease.
Sorry to vent but was just wondering if anyone had any ideas how one emotionally acceps this illness when others around them cannot, expect the same of me and get upset when i can no longer do things, are not fighting tooth and nail to help get me treatment and if i don't get treatment not even helping to provide me with some things i will need for at least some quality of life untl this disease eventually takes my life.
Any input or ideas would be highly appreciated!!!!
oh...so sorry this is so long...i had so much to say and due to cognitive problems cannot shorten my thoughts and often ramble..i am so sorry..
oh...a funny thing to end on...the ironic thing is that all my mom keeps ssying is that I need to "cooperate" as i am unable to lift my headin the morning to take meds and am resdy to throw up and how she is guilty of nothing but "overloving"
oh..one finally laugh...my whole family is so concerned about me not being alone because i cannot function on my own ....
yet they are giving me no other choice but to have to fly6 hrs totally alone and that the people pushing the wheelchsirs will help me keep my stuff together snd make sure to remind me to drink and to keep track of my stuff ..
so i don't get so confused i wind up at the airport having lost my id, credit card, money, etc.....used those wheelchair aides a million times and being someone's brain is not in their job description
Thanks for listening to my rambling...i know everyonehas their own stuff with this...just was wondering what all your thoughts were and how you all cope and hve come to terms with this, especially if you csnnot get any treatment, self trest because of life threatening herxes and too much mentsl confusion to even understand how to take these meds.
xoxo new lyme friends
Posted by Tincup (Member # 5829) on :
How about this....
Clean up this post, shorten it.. and send it to your local politicians and ask them for help?
Make them aware of what you and many others are having to deal with. They might not be able to help you... but at least you can educate them if nothing else.
Then I would start going to docs in your area that take your insurance. Locally so you can get rides. Eventually you may find ONE who can help. But you won't find one unless you keep trying. I know it is SO hard to do... but it is able to be done if you set your mind to it.
I "accidently" found on of the best docs I had in Florida for lyme... but I had to break down many doors before I did.
Wish I had more productive answers for you but as you even indicated, this is a bad thing for so many people... and there are no "for sure" answers.
Posted by the flim-flam man (Member # 23310) on :
Can I share a story? My mother has a very dear friend. Herfriend was diagnosed with fibromyalgia(sp?). Mom was going on and on about how sick poor "so and so" was. I asked what was wrong with her. Mom said "She has fibromyalgia." I replied, I was diagosed with that as part of the chronic Lyme. Friends, the subject IMMEDIATELY changed. That made me feel like the one who invited the uncle no one likes to Christmas dinner. If I've learned anything, it's this: Find people who can and will support you. I no longer discuss ANY Lyme - related illness with my mother.
Posted by kam (Member # 3410) on :
Thinking of you. Hugs.
Also thinking of that abandoned boy's home that would make a good place for those with lyme to live while they heal.
We could have a full time nurse on hand. A LLMD that comes in every 3 months or once a month if it is the Local LLMD in the valley.
There is a place for horses and it is next to the National Forest and trails for those who improve enough to get on a horse and go for a short ride.
There also is a chow hall. And we could deliver food to those who are not able to make it to the chow hall.
Set up pill boxes for those who are not able to do that yet.
Power chairs to help people get outside and in and out of buildings.
We could have chicken's and horses and goat's for those to feed and milk and collect eggs when they are up to it.
Two homes on the land. A bunk house. A well.
Not sure about electricity but there is electricity about a mile from the place.
Looks like swamp coolers were used. But, with lyme patients we would need to be able to cool things down in the summer and warm things up in the winter.
So, would need to have electricity brought in.
Now, that I am typing this I recall propane tanks on the land.
The land is also zoned for individual dwellings.
OK. What does this have to do with you. sorry, it just popped in my lyme brain.
I like Tin cup's idea.
I am thankful I received SSI and help from the county when I was at my worse as far as household chores and meals, etc.
I did learn from having the people from the county coming in that it was a catch 22...even if they were fine and quiet and worked independently...it was still tasking on the body.
Did I mention there is a river that flows through a canyon in front of the property during the winter too.
And pine trees and boulders. Wonderful peace of land.
A fire pit with places to sit at night.
Posted by METALLlC BLUE (Member # 6628) on :
Since you have cognitive issues, I have broken this down and created bold introductions to each paragraph. It shouldn't be too overwhelming if you just take it one paragraph at a time and then rest. I will break this post into two separate posts as well, to make it even easier to manage.
Emotional Acceptance
The first issue is about emotional acceptance. You can not accept the unacceptable. It is not possible without intentionally deluding yourself. If someone is asking you to delude yourself, they're the ignorant one (and wrong....).
Possible Ways To Convince Family Of CLD
If your family hasn't seen Under Our Skin, I suggest getting them together to watch it. Someone from Lymenet would gladly send a copy if you can't afford it. It doesn't sound like your family would be willing to do that and even if they did, they appear to be "deluded" themselves to the point that they aren't even capable of grasping the science. I would get a copy anyway and make them watch it. I wouldn't even tell them what the movie was about until it started to play. They'll either get up and walk out, or they'll be annoyed but too lazy to leave and thus will sit thru it.
Antibiotic Treatment You Can Do Without LLMD
As far as treatment goes. If you can get your hands on some Tetracycline or another "cheap" drug which hits a large portion of co-infections, you may be able to at least stop the progression of the disease until you were able to get additional help. This drug is available anywhere, and I suspect even some patients would be willing to give you some. Though, I'm not saying they should, I'm just saying it could happen, if you know what I mean. If I was you, I would attempt that first.
Social Security And Your State Medicaid Services
Second: You need to file for social security disability. While people may not believe your Chronic Lyme diagnosis, you obviously have a lot of other diseases which are easily appreciated by the government. To get SSI, you can apply online. I would also suggest contacting an SSI Disability lawyer. You can find them in your local area by doing a search in the Yahoo Yellow Pages or something of that sort.
Asking Lymnet Members & Family To Help You Directly
If you're unable to do these things yourself, it might be useful to ask members here to help you do the research. You can also ask your husband or whoever is even remotely willing to help you.
Who Is To Blame?
The reality here is that you are not the problem. It is everyone else. I know that's shocking and hard to accept, but it's the reality.
Finding A Potential Lyme Doctor
I'm not clear about how you were diagnosed or which doctors you've seen. I'd be more than happy to give you a list of physicians where you are located or in Florida -- which appears to be where you're moving.
[ 12-04-2009, 01:39 PM: Message edited by: METALLlC BLUE ]
Posted by METALLlC BLUE (Member # 6628) on :
Good Article Describing Your Illness
If you'd like, there is also an article titled "When To Suspect Lyme Disease." It would be useful to read it so that you understand the ramifications of how serious the disease is.
I'd also be more than happy to provide you a long list of studies demonstrating the persistence of Chronic Lyme Disease. Plenty of studies show that the bacteria "survives" antibiotic therapies. pubmed.gov is a database which researchers submit their studies to. This allows the rest of the world to peer review their research and to access it for their own studies. That is where I got the studies. I have well over 100 of them and they are condensed and easy to read because of how I organized them. It would take someone less than perhaps 5 mins to read the bold print. I have referenced each source for the study and journal it corresponds with.
When you apply for SSI and then are awarded, you will get Medicare insurance with your disability. Igenex laboratory takes Medicare and won't charge you much -- if anything -- to run all the testing you need. Igenex is a credible laboratory approved by Medicare, and they have their CLIA approval number, which is an offical approval that authenticated labs must have. If you test positive, the test is accurate and has been proven by blind independent investigation by the government over the course of the last 15 years.
This is the facts: Your family is wrong. You are not delusional and are very sick, and many of us have experienced what you are. SSI would approve you. A lawyer can ensure you get it done right the first time. The lawyer won't cost a dime if he takes your case since he's paid by Social Security when they pay you for the time you've been disabled. A retroactive check would probably be anywhere from 20-50 thousand dollars for you, and the lawyer would take 15-25% for his cut. So there is no reason to avoid that.
Again, if you need help, ask the members here. Get yourself some basic Tetracycline or Doxycycline. You can get the generic dirt cheap with or without insurance. It's about 20-40$ a month for a plentiful supply. If you can get a doctor to give you that, just tell him "Hey, what do we have to lose? It's not like the drugs side effects are worse than what's happening to me, and the drug has a solid track record of working for many conditions without consequence, including plain old acne of the face."
Personal Care Assistance & Therapists
I hope this helps. Also, PCA's also known as Personal Care Assistants are supplied by the State of where ever you are if you apply for them. You can look it up for your state. It's usually under a Medicaid service. You'd get a lot of hours and a lot of help. Also, there are counselors around the country who would likely counsel you by phone if they are Lyme friendly or literate. I'm not clear who you'd work with at first, but other patients might chime in. I know of a few up here in the northeast. Also, some patients here have backgrounds in psychology and social work. Out of simple advocacy, they may be willing to call and talk to you and give you that "ear" you need for support. Actually, anyone may be willing to talk to you if you simply ask. Create a thread for help on any of these topics I've discussed: SSI, Therapy, Tetra/Doxy, SSI/Laywer, Family Denying Lyme, etc.
The link below contains access to how to get disability services, including personal care, SSI, and a variety of other options. The first link for disability.gov allows you to choose whichever state you live in. Since you may be moving I thought you should know that. You can get your utilities paid for or at least get help paying them. You can also get a free cell phone with free minutes if you apply and are disabled. I believe safelink offers a program. I'll provide a link to that too.
Final Words: You can overcome some of these hurdles. Lymenet members will help if you ask directly. You're not dead yet, so there is still fight left in you yet. Like Jon Foreman says "Welcome to the fallout, welcome to resistance, the tension is here, the tension is here, between who you are and who you could be. Between how it is, and how it should be! I dare you to move!"
I hope this helps.
Posted by lymebrained (Member # 22066) on :
sorry it took me so long to respond..i didn't set this to notify me of responses to this post so i didn't think there were any.
I thank you all for responding. I was dx'd by igenex and initially by dr H in NY.
As for acceptance, my parents refuse to watch under my skin and I have sent them numerous articles (very good ones..I used to be a health educator and work in social services before i got too sick to even help myself) but they refuse to read it or just read it and said "ah, interesting".
Actually it some of the articles you mentioned above. They just can't face reality unfortunately and are heavily in denial. They'd rather just close their eyes and have this be gone and so they always say "things will be fine" and "you'll figure it out"..their answers to everything.
Meanwhile..my mother in law TRIED to be helpful..she came back from her primary care dr and said "i found a dr for you"..it is a rheumatologist and he treats chronic lyme and chronic diseases"...I cannot find any info on him and asked the fl lyme contact and she knew nothing of him..I am guessing he is of IdSA thought..
Mother in law told her dr i was having trouble finding someone who takes insurance and have been sick for years and her PCP said "that's nonsense...many drs take insurance" and she recommended her rheumatologist who is compassionate".
I tried very hard to call there and speak to medical asst and find out more about him and whether he actually treats chronic lyme and how but they will not speak to you unless you are a established patient
Problem is..my mother in law is so convinced this is the one that she wants us to change out moving plans to move closer to this dr when we don't even know anything about him....and we cannot get in until we would have already moved to florida.
Hubby and I were trying to explain the IDSA guidelines versus ILADS and how most rheumys treat w/ steroids..etc although some are treating autoimmune disease with antibiotics..point is..
I have no clue who this dr is and mother inlaw wants me to move closer in to her to see him and knows he is the one because he treats chronically ill
This would be away from my sister and nieces..the one thing that makes me happy..boarding my cats for months if this doesn't work out (my cats are my family and a huge comfort to me..she hates cats)
Yes..how do you come to acceptance of this?? My parents certainly have not.
I did recently pull up all the strength I have and got in touch with a big lyme contact here and I spoke directly with this person about drs and she gave me some great guidance. I also found a lyme psychologist willing to work with me.
As for treatment...I am now going to a dermatologist for a questionable mole that might turn out to be skin cancer and i could have asked her for abx for 'acne" but i am scared because I herx so bad and my herxes have landed me in hospital beyond ill.
I now have a few possiblities thanks to this forum, my sister on her limited time, my mother in law, and mostly myself pulling up my strength and getting in touch with lots of contacts here.
Unfortunately, there IS no in person support group close enough for me to go to...nearest is 3 hrs away but I will find out if anyone can get me there.
I do have medicare..but it is secondary and i have primary insurance from my husband...I do not qualify for medicaid due to husband's income and even my own ssdi (which is way over limit but still not enough to live on)
So..I desperately need a personal care assistant but we will have to pay out of pocket for one ;(
I wish there was a place for us lymies to go and get treatment KAM...great idea in theory but we need funding ;(
So..some things are coming together but as for finding someone local...I cannot get anywhere myself and I have no rides to try out a whole bunch of drs...but as i said..i connected with a huge lyme contact here and she gave me some good advise
If I could drive and had the cog skills to explain to drs without incriminating myself (if that makes sense)..i would keep going to drs..but i don't...but I did find out who many people in fl go to and I know of some dear lyme friends in NY that also went to this dr and were very happy.
When I have someone to help me clean up the post and write my story, I will send it to politicians...at my best..i am better verbally than writing..writing is always harder for me
Thx for all your support. Speak soon!!!
Hugs
Posted by lymebrained (Member # 22066) on :
tincup
I tried to PM you to find out who you eventually saw in florida but it will not allow me to pm you..can you pm me?? I would appreciate it. Thx so much!!!! Posted by METALLlC BLUE (Member # 6628) on :
Well, if I can do anything to help, let me know. I'm excellent at problem solving.
E-mail: [email protected] Posted by lymebrained (Member # 22066) on :
metallic blue..your name sounds so familiar..i wonder if i know you before. I will email you when i get the mental energy. Thanks. Alot of it has to do with my family and lack of help and also my not being able to see a dr unless he takes insurance. I will email you when I can express myself...it is hard to express written
Thanks so much!!!
Nancy [email protected] (use this to keep all my online support group stuff separate)
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