beaches
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posted
I just think we all need somewhere to vent.
Posts: 1885 | From here | Registered: Jul 2012
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lpkayak
Honored Contributor (10K+ posts)
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posted
ha ha ha...my email got hijacked...embarrassing
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
My gut, my body feeling so heavy it is as if I am living on another planet were gravity is much stronger, my brain, the all over pain.
I mostly miss getting in a car that is newer and reliable and having a way to transport my power chair....I'd like to travel..but not sure how realistic that is.
I'd also like to go camping but not sure how realistic that is. There are lots of camp sites starting 3 miles from home and further...I would do the 3 miles from home first.
I miss not having a washer and dryer in my home and owning my own home. Went down the hallway to the community wahser and dryer here at the apartments using my large power chair.
I miss my smaller power chair working...it is the one I use around the apartments and when I am in stores....
A cell phone. I would like to have a cell phone that has captel services and relay services and texting services...not sure if this would help me be able to talk on the phone but i would like to give it a try.
A LLMD. I miss not having a LLMD and treatment.
I miss not having a friend locally...lots of people here at the apartments have reached out to me but they are living here because they have health issues.
it takes too much out of me to be around them...wondering if I had someone who was doing better health wise if I could be around others..depending on the person.
I have lived here since 2005....still no connection with anyone with the exception of one to three sentennce conversations with neighbors when teh brain allows while I am out toileting Rosie.
I need to get Rosie cleaned up and shaved too...lack of funds are keeping me from doing this. I used my Walmart credite card to charge food last time so I would have enough money to get her groomed...she is a standard poodle so grooming is not optional.
NOw, It will take me 6 months to get the credit card paid off and that payment is cutting into my food bill.
So, I am learning not to use that card again.
Cable bill. I went in to get my telephone service with the cable company. it was supposed to be $20 a month.
Instead I got a bill for over $100...I have been to the cable office 2 times...hoping the 3rd time will solve the issue.
They goofed up and charged me for two phone lines and installation when only I thought the commercial said there would not be any charges I just wanted to switch my phone over with the same number to them as it was going to be cheaper.
Not being able to clean out the inside of my car and wash the windows well enough so when the sun is on them I can see clearly instead of streaks.
Not being able to go to thhe grocery store and having to wait until my health is doing well enough to do so.
OK. I am feeling better now. Things aren't so bad. I hve more to be thankful for and I am doing better than I was.
Ah one more thing...family....family that makes things worse instead of better but thankfully they pretty much leave me alone now...which is very good.
But, I still need to let go of past hurts and anger.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Tired of being tired. Tired of being a burden to my family. Tired of feeling guilty but I know I can't help it. Tired of feeling like I have to explain myself to everyone.
Posts: 415 | From USA | Registered: Jun 2012
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
I am tired of waiting for Jan. first 2014 when the afordable health care act kicks in.And I can get the care I need.
And being afraid it will never happen!!
MADDOG
Posts: 3996 | From Ohio | Registered: Oct 2000
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i'm frustrated i opened over 50 totes and didnt find my down comforter...after that i realized its probably in a plastic bag in the shed. hope i find it tomorrow
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lax mom
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Member # 38743
posted
I'm angry and frustrated that in 2012, in the United States of America, even 1 person has to pass away due to a tick-borne disease/medical ignorance.
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
lpkayak, I'd be annoyed if my email was hijacked! And a bit aggravatd if opened up that many bags and still didn't find my comforter!
kam, wow you sure do have a lot to be aggravated/frustrated about. I hope your situation changes soon for the better. Sorry to hear about your family making things worse than better.
Maybe down the road we'll hear from others why family makes things worse and why they need to leave some people alone. It's odd, isn't it? These are the people who love you the most, but sometimes they aggravate you the most.
And yes, I absolutely agree that it's a good thing to try your best to let go of past hurts and anger. I have some of those emotions myself, and I am just recently learning to let go of them because it doesn't do me or anyone else any good to hold onto them. It ain't easy to let go of all the hurt though, for sure.
Lymetoo, I TRY! But I don't think most people think I am funny! You have to be me to get me lol. Sorry about your feet-I can sooo relate!
Messa, (hugs to you). Maybe it would help to talk to a LL therapist? Just throwing it out there.
MADDOG, (hugs to you too). I hope everyone here can get the help they need. Fingers crossed.
Thanks to everyone who responded. I was not trying to be sarcastic or funny when I posted this topic.
I just really do think people need a place to vent. Most of the time, I am too aggravated or frustrated to read the threads about what I am thankful for today, what I can do today and God-thought.
And those topics are great--it's just that at this point in my life due to circumstances, I am not in a place where I can "go there" although I am hoping I can sooner than later.
In the meantime, feel free to post about what is aggravating you today. Like I said, we need to vent.
Posts: 1885 | From here | Registered: Jul 2012
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
lax mom, I agree 100%. We are both thinking of Steve tonight, no doubt. What a travesty that in our great country this has happened. I do believe that we haven't heard the last from Bea, or Steve for that matter. In the end, justice and good always prevails. I really do believe that.
Posts: 1885 | From here | Registered: Jul 2012
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
quote:Originally posted by beaches: What a travesty that in our great country this has happened. I do believe that we haven't heard the last from Bea, or Steve for that matter. In the end, justice and good always prevails. I really do believe that.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
im frustrated i cant seem to stay focused long enough to pick up this house.
i NEED to get going on lawyer stuff but i am dealing with overflowing toilets and no heat and workman winterizing camper and elderly friend and i just want to scream!!!
it gets easier every year to not give up when stuff like this happens...cuz eash year i read so much stuff on here that is so much worse than my day to day crap. suffering. and death. due to ignorence and money...that downright p____s me off.
ps-i found the comforters in the shed in a garbage bag...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Angry that I (finally) qualify for disability, but that Medicare that comes along WITH disablity does not have coverage for home care for someone who is too disabled to care for myself!!!
Angry that my ex-husband left 4 1/2 yrs ago and that I've suffered so much since trying to survive on my own with this illness.
Angry that so many of my previous friends have deserted me, including those I considered family.
Angry that my family deserted me years ago when I became sick.
Angry that I can't get decent medical care, and that my new doc actually got angry with me on our phone appointment yesterday because I'm not getting enough nutrition!!! My body is literally attacking everything I try to eat, and that was the entire reason I started seeing this VERY expensive doc in the first place and he assured me that he could help me find a solution. He went over my test results and told me I was deficient in a couple of things and suggested a couple of supplements - one of which I already knew I needed - and told me to check back in a couple of weeks to let him know how I was doing.
ARE YOU KIDDING?????? I may not last another couple of weeks. I've lost almost 30 lbs in 5 weeks. I can tolerate plain chicken cooked in water. I was tolerating rice but now am reacting to that also. I started snacking on these yummy graham cracker things that I like, and was tolerating those fora week, and my weight was starting to stabilize. Then today, I had a bad reaction to them also. I can't finda doc who will take this seriously, and I'm scared of dying. I'm literally starving to death, and NO ONE CARES!!!!!!!!!!!
Thanks, all - that's my vent. Scared and alone. And really, really hungry!
~Jenni
Posts: 18 | From Charleston, SC | Registered: Oct 2011
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posted
I have it good compared to lots of folks on here. The one thing that has frustrated me the most this week is this:
A church acquaintance seemed very concerned about my health issues and asked me some questions a few weeks ago. I explained the basis of it in a nutshell, about the lyme and no docs around here to treat and why I stopped traveling over 2,000 miles to see the doc I was seeing. He explained to me that his wife works with and knows a lady who is in the medical field and has dealt with LOTS of issues similar and he would like for me to meet with her to see if she could help. I say, "ok, whatever" pretty much. I never heard back, so I didn't think much more about it. I saw him Sunday and he said he would try and get a time Wed. for us to meet. Maybe we could meet at the church or something..I say ok.
He calls Mon. evening, and I'm exhausted. He wants me to drive 50 miles to meet with her and himself and his wife at a restaurant. I am like, "I have to drive there (50 mi. each way) tomorrow for doctor appt. and testing, and I'm not sure I'm up to drive there again wed. Plus that time is difficult for me". He began to plead with me, that she is VERY busy and that I may not get another chance and he really thinks she can help. I tell him that I doubt it very much, but finally agree to make the trip AGAIN..
Of course by the time Wed. evening rolls around I'm exhausted, been running fever most the day, had a nap mid day due to fever. I drive over and left my hubby to eat leftovers to be there @ 5:30 like he asked. My 12 yo dd comes along. I promised her to take her to I HOP following the "meeting" where he told me that they weren't eating, just drinking tea. I'm not happy the entire way over.
We get there @ 5:25, they show around 6:00, when I was just leaving. So, I sit to speak with this "medical professional" who is retired air force too. Everyone orders food, and I can't eat, b/c I am on Medifast diet and can only have one non MF meal a day. I drank some decaf and watched them eat a boat load of food. Every 5 min. a waiter or someone came over and interrupted the meeting.
I felt like the whole session was her asking me to defend why I "thought" I have lyme, and why I would take antibiotics for that long a time frame. Just as I suspected, she knew dittely about lyme.
I can't explain 9 years of illness, over 20 docs and dx's, etc. in that time frame. She evidently uses lots of natural healing products which I'm fine with, but are very expensive in my experience. She proceeds to tell me how terrible the medical care here is (which I know), how I'm probably deficient in vitamins and minerals, which I actually told her I'm not. Etc..
She ended up to tell me that she "would" try and help me, and thought she could, but that I needed to bring her all my medical records, labs, etc. and she would narrow a diagnosis and treatment from that, or we would "together"..She said several times that I could not have all those dx. I agreed. I said, "I know this, I'm just explaining to you what other docs have said to me". "Why would I believe I had 14 diseases over the ONE disease that covers all my symptoms?".
I felt after the meeting like I'd run a marathon and still no closer to any help. I feel she won't accept the lyme diagnosis, and IF she does anything to help it will be anectdotal. She is very upset by the amount of medications I have been on and am on now. Says they are poisoning my body. BUT, I don't feel I have much a choice. I need some of that stuff.
We finally left around 7:30 and I had to stop off @ Target and get minutes for my phone (yes, I have to get tracfone min. b/c I can't afford a smart phone) unlike everyone else @ that table, and couldn't afford to eat @ that restaurant either. But, I am NOT stupid and didn't appreciate being made to feel that way. We then went to I HOP and ate and left for the 50 mile drive @ 8:30, home @ 9:30. I feel I wasted the $20 in gas money as well.
I know my church friends were trying to help, but GEEZ! I don't know if I'll have the energy to get all the records she wants, even still if I do, I don't think I'll be able to afford anything she may recommend. I haven't decided whether I am going to even try. My PCP and I are trying to do what we can to eliminate some of my meds already, and this lady did say that she would work with my PCP, but I just have so much doubt.
I have anger too, that she would think she knows so much about a disease that I have studied, and LIVED for all these years. She told me point blank that lyme does NOT cross the placental barrier and that my dd did not get it from me. REALLY? How would she know? I've had 2 llmd's tell me opposite of that. ILAD's LLMD's..
Just so frustrated, and don't know whether to see if there is something she may can do for me, or just say forget it. On the up side my friend did watch Under Our Skin..Of course the "busy" medical professional did not..
Sorry so long..grrrr
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
Having nobody believe me...
Having peoPle condemn me because I don't believe what they do politically. Name calling and such.
That there is not a cure for this awful disease
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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P.S. @twicebitten... I'd politely thank the "medical professional" but run.... she may mean well but doesn't know squat. don't feel guilty about the church people trying to help because they don't "know" either....
I've found more peace in just letting go... but it's hard.....
JMO...
Posts: 396 | From EAPennsylvania | Registered: Dec 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Those people I saw walking and talking on their cell phones.
They make me mad. How can they do that? Multi tasking is out for me now although when I was well I would put on my headset to my phone and do my chores while talking on it.
Just watched a rancher in Alaska on TV bringing in his cows while on his horse thru the snow.
That aggravated me too.
Get off your horse. Don't you know there are people alying in bed who so want to be able to do what you are doing.
OK getting off my high horse now.
OOps. Thought of something else...they also showed a person picking the veggies she had grown in her garden.
That aggravated me this am too.
The nerve.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
besides the health issues...my neighbors dog who started barking at 6:30 am and went off and on for 3 hours this morning...
Posts: 857 | From northern california | Registered: Dec 2009
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
dogmom...ugh
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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AuntyLynn
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Member # 35938
posted
TWICEBITTEN -
FORGET HER! She could be real TROUBLE for you!
I would NOT give this woman ANY medical records - that is for certain!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
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Member # 35938
posted
OMG Jennie-bunnies ...
Chicken is all you can eat? What about eggs? Like, soft boiled?
I imagine you can't handle milk either, otherwise I'd ask how you do with yogurt.
Did you get the supplements the doc recommended?
This is really worrisome! I don't blame you for being frightened. And shopping/cooking sounds like a problem too.
Have you tried any protein drinks? Like "Raw Meal" that is NOT made with soy? How long ago did the problem start - and what symptoms are you having...nausea?
Maybe we can help by brainstorming here with you.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
thanks Aunty Lynn and fourwinds: I've been thinking and if she doesn't believe I have the disease, she probably won't be much help anyway. Besides most of the medical folk that claim they treat "naturally" cost an arm and leg for what they recommend. I wouldn't be able to afford her recommendations anyway if I am honest. She may be able to help with some inflammation issues, or whatever, but if she doesn't believe in what my main problem is, how will she ever address the root cause? I guess I just needed to hear some sound advice. Not seeing any llmd for several months has me in a weird state mentally.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Having trouble with the brain thing again. I just took 2 excedrin so hope it helps and am laying here on an ice pack.
I am aggravated that I am only able to do things until about 9 am and then need to veg and recline until ater 5 or so.
And what I am able to do is very limited.
Maybe it isin't helping by typing this out.
I am typing with my eyes closed.
So far, just one of those days where I think ..well I won't say what I think. I willl get through this
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Halloween!
Having 1 child with clothing OCD, costumes are a nightmare.
It is 1 big sugar and dye fest at the school. Yeast all around. My least favorite holiday.
Bah humbug!
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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I had to give up on Halloween last year. No one ever comes to my door. Maybe it's 'cause I look like a witch!!
I think they all go into town to the more afluent neighborhoods to get the most candy. They don't know that I always sit here with a bag of candy and they'd get half the bag if they showed up!
As a former teacher, I miss not seeing the kids and watching them have fun.
I'm going out to dinner tonight and won't worry about it.
Surprise.. I can see why you hate it!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
The pain and the difficulty staying focused...not sure if this is due to the pain but guessing it is.
Resting now, then hoping things improved so I can get up and do some more but only 45 min until my brain and body shut down for the day so we shall see
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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