METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I originally wrote this post back in May, but I've now updated it in December. You can skip down to the December Post if you wish to see where I'm currently at. I'm just looking for empathy and shared experiences from others dealing with the same (similar) situation.
My nephew had his first communion Saturday. I was unable to go because of the flight to Italy two days later. I'm at the airport right now in-fact.
At any rate, to keep this short, my brother and family have always been dickheads around the holidays. As if the pain of missing the day because we're sick isn't enough, we also have to listen to them cry and complain about how we've disappointed them once again by not showing up.
My brother (His son had the communion) told my mother (who did go) that he was disappointed I couldn't make it, and he said "If he can make a 15 hour flight to Italy, then why couldn't he spend two hours visiting me?
At the bottom line, I called him up and gave me a very patient/kind piece of my mind. I explained the facts. It is always he who is the victim, as though he couldn't come visit me. I'm the one sick! He complained about not having met my current girlfriend of 3 years, and I said the same thing, why don't you come to visit me instead?
He deflected and went on to say how he understands my sickness, and then in the same breath said "It was only 2 hours, "
I told him "I'm sorry you feel disappointed, but the reality is, if you expect too much, your going to be let down.
He was ice cold and we left it on that note. At least he was honest with me, but he defintely doesn't understand and he likely won't for quite awhile.
[ 12-15-2010, 03:19 PM: Message edited by: METALLlC BLUE ]
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
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posted
- Regardless of health, I hope things change with your family, especially your nephew. He may rather have some individual attention, anyway. I had tons of relatives around for my first communion and I don't recall one meaningful interaction. It was just a swirl of a memory.
Send him some emails from Italy and, when you return, invite him up over an Italian Day - sharing your stories. You can show him you care but also have to think ahead to take care of your body. That's a good lesson for him.
As I recall, you will be in Italy for 3 months. I hope you have a grand time.
Now, I was going to offer a few contributing links to a Lyme book you are working on for introductory materials for LymeNet. I have barely managed to read what you sent (just too tired). So, I've either missed the deadline or have 3 months, eh.
You may not check back to this thread until August - however - here's a bunch of good energy for an absolutely fabulous journey. I hope it meets and exceeds all your expectations on all levels and that you at least will have some humorous tales out of any let-downs.
Ciao ! Divertiti. (That is supposed to be "Enjoy" but thought I should be clear in case the translation is not that at all). -
[ 05-10-2010, 10:46 PM: Message edited by: Keebler ]
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Jane2904
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posted
Safe Travels, Mike.
I hope you have a wonderful trip!!
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Hoosiers51
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posted
I'm hoping my saying this doesn't upset you....but I'm confused why taking a trip to Italy is possible, but going to a First Communion isn't?
How far away was the First Communion? Did you know about it when booking your flight? Is the Italy trip business or pleasure?
Personally, I would be hurt if my brother missed my child's First Communion, then took a trip to Europe 2 days later. I am just giving you my perspective and my honest opinion.
It would depend how far away the Communion was, but if it was within a 3 hour drive one way, I think it's doable, especially if you have a friend or partner that could do the driving.
Another big factor is if you knew about it before planning your trip. There are just a lot of factors as to whether something is doable or not.
THAT SAID, I personally have a huge issue with people guilt-tripping me over not doing things. Yes, he has a right to be hurt. Given the facts you presented, I'd be hurt.
BUT, I NEVER make people feel guilty for something they decided, because I tell myself that I'm not in their shoes, and I also figure, what is the point of taking my inner hurt and inflicting it upon someone else, when what's done is done? So I think it's wrong of him to put a guilt-trip on you.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
My family is very supportive of me, but they really don't understand how sick I am, and that I really can't do exhausting and time-consuming things.
I am facing the impossible task of packing up my place to move, due to Lyme. They were trying to give me helpful advice, and saying, "Just do it very gradually and try packing one box every day."
If only they understood how much it would take out of me to pack even one box. Plus I haven't had the energy to go get a box.
I make a great effort to make it to work every day, and then people think, "Well, she can't be that sick; she works every day. I'm sure she could manage a 2-hour event."
Of course I am using everything I've got and more just to hang onto my job by showing up every day, so there is little or no energy left for other activities, and no time, because I spend my days off sleeping and taking care of myself.
But my mom does not understand if I tell her that I am unable to attend a family social event, or unable to bring food when it's expected, etc.
Last week she asked me to come over to her house and spend the weekend moving a couple rooms' worth of stuff for her. I told her I would try if I could.
I had a flare and felt horrible the day before, so I told her I was wiped out. She said, "You better not be TOO wiped out--I need you to come and move that stuff."
I really couldn't, and didn't, so I stayed home to sleep. My mom got over it.
The trouble is that nobody sees me when I am feeling the worst, and they don't know what it costs me to do something that can make me fatigued for days afterward.
And I don't like to whine to them about poor, sick me, so I guess I kind of perpetuate the image of a person who is more functional than I really am.
My family is also of the opinion that I am on the verge of recovery, even though I know it is going to take a long time more and will be something I have to take care of the rest of my life, if only to prevent future relapses. When I try to explain to them about the complexities of Lyme and how lengthy treatment is going to be necessary, they think I am being pessimistic instead of objective.
I hope you can find a good balance with your family and your need to take care of yourself.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- Hoosiers51,
You may not be as ill from lyme as others. Anyone who has to ask why someone could not attend an event probably is very fortunate not to have been affected as badly as others.
I have to go to the dentist in 10 days just for a cleaning. Every minute from now until then must be planned and carried out in perfection for me to survive that appointment. I have no room for anything that is taxing. And, it will probably take me two weeks to get over that. It's that taxing on my body. And it's just 10 minutes away.
Absolutely, this is up to the person for whom it's most difficult to decide, to weigh all things considered and then be respected for doing his best to take care of himself.
No one has a right to criticize the decision made. No one. Would such criticism result if someone canceled due to the flu? No. Everyone would understand. Well, lyme makes people fell like a dozen flu bugs all together.
So, yes, we often cancel due to how we feel or knowing that we must pace ourselves and there is a very fine line in what can set us back for months.
No one even deserves all the details, especially when they've failed to learn about what their loved one is going through with lyme.
A First Communion is not about the party. It's a private religious matter between the child and his God. It should not turn into an excuse for the grown-ups to toss blame and criticism at anyone for not showering enough attention on the kid. The uncle sent his kind wishes and desire to be able to spend time with the child later. That speaks volumes.
The kid will be fine if all the grown up around him don't make his uncle sound bad. It's beyond ironic that an event that is to teach a child about love and compassion has turned into an ugly toxic mix. It could have been used as a teaching moment about how, even if someone is unable to be there, their love is still solid.
No one has a right to criticize the decision. We, of all people, know how difficult such decisions are to make. Too many lyme patients try to do it all and then wonder why they can't get better.
No one is owed an explanation for another's choosing personal safety over attending any event.
Mike, I hope your journey goes well, indeed. May you be free from critics who don't understand. May you find yourself among good and true people, all of you enjoying life, even if it's not perfect. Yet, here's to feeling better and having all the different kinds of love and relationships in your life in the right balance. -
[ 05-11-2010, 02:42 PM: Message edited by: Keebler ]
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Hoosiers51
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posted
Keebler,
I was only basing what I said on the assumption that he was going to Italy for pleasure, because I don't know of any Lyme treatments in Italy, and there was no mention of treatment in the first post.
A trip to Italy would be only in my wildest dreams. I can travel by plane, but a 15 hour flight would be utterly exhausting for me, and I only travel to see doctors, when absolutely necessary. There is nothing pleasurable about travel for me.
I'm a little offended that you are trying to speculate as to how ill I might be or how ill I have been.
I spent the first couple years of my illness too ill to be on this site, let alone anywhere else geographically.
Metallic,
I think that because you had your flight sceduled before the Communion, and you told them you wouldn't be coming, they don't have a right to be judgemental with you.
Since the trip is for health reasons, that gives it a completely different spin than if it was strictly for pleasure.
In my head, I was surprised you were well enough to go to Italy for fun! Lol, looks like that's not really the case.
I hope the Bionic helps you, and I'm sorry you have to deal with all the guilt from your family.
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sixgoofykids
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I get it. I had to cut off ties with several of my family members when I was sick because I simply could not keep up with their expectations. The resulting drama of me not keeping up had a poor effect on my health. I still have limited contact with them. It's a shame, but it's sometimes necessary.
I was about 45% when I went to Germany. I came home about 50% improved .... bad days were 70% and good 90%+. Good luck with the Bionic, and I hope you have a chance to get out and see some sites. I had a few times where I got to see a bit of Germany.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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METALLlC BLUE
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posted
Thanks for all the support. I'm still frustrated that these events even happened, but I made it to Italy safe. I had a good night of sleep. Now it's a waiting game. One week, then I begin treatment.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Last week our Grand Daughter made her First Communion...my husband was only able to make it to the Church and we had to sit in the back...
he had a hard time...but this is the youngest grand kid so he went to the others before he was sick....
he couldn't go to the party...but still family still ask why he didn't come...they just don't want to even try to understand...now i just enjoy my grand kids, my girls and go on...
Madge
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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merrygirl
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I see where hoosiers is coming from. I also know that Hoosiers is as sick as the rest of us. so saying she isnt sick is not fair.
But I can see why someone would be upset that you couldnt spend time with them then jump on a plane for 15 hours. You have to look at it from the healthy persons perspective, which can be hard for us sometimes.
just playing devils advcoate for a minute.
MB- Glad you made it safe. Good luck with treatment you deserve it
Posts: 3905 | From USA | Registered: May 2007
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posted
It is sad that we have to limit family but even if you were well, if your brother has not visited you in three years he is a very self centered, self pitying person to turn it around and blame you.
I call these people toxic to my health and although I don't want to cut off people completely (as one day I hope to be well and resume the relationship) I do minimize my contact and responsibility towards them.
I hope you can get it out of your head so you can concentrate on getting better and sucking up all the positive ambiance of Italy and your pending treatment.
Hopefully you will recover and once again resume the responsibility your brother has given you of keeping a relationship going with him.
Sending you good positive thoughts.
maps
-------------------- 1999 CFS, 2002 CMV Myco pneumonia 1 year antibiotics on and off 2002 EBV, 2009 Positive Igenex Borellia and Babesia, Brain mri severe white matter disease Monoclonal Gammopathy. On and off antibiotics since sept. March 9 started iv antibiotics Posts: 328 | From somewhereelse | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
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- merrygirl writes: " . . .But I can see why someone would be upset that you couldnt spend time with them then jump on a plane for 15 hours. You have to look at it from the healthy persons perspective, which can be hard for us sometimes. . . ." end quote. ----
No, I can't see how they think they can blame someone whose body is not up to speed - - unless they are totally selfish and arrogant - and even abusive - in their refusal to listen.
Not if they really took the effort to learn, to listen and to trust which, by now, they most certainly have had the time and opportunity to do so but have shown no interest.
Healthy or not, they have no right to dump guilt and anger on some one whose first responsibility is his own self-care (and that takes looking ahead).
(Non-affected) family members need to step up to the plate and learn about lyme. They need to see the truth.
So, no I most certainly do not see that they "see" this differently when "differently" is going beyond even typical denial, and moves on to destructive attitude and comments. What they need to see is the truth. They decline.
The ball's been in their court for a long time. I'd move on to a different game. Family or not, MB has repeatedly worked very hard over time with great effort.
I've about had it with "family" who reject reality. "Seeing it from their perspective" of denial, dismissal and outright rejection further delegates lyme patients to feelings of shame and guilt, knowing others don't care enough to learn.
Does "Seeing it from their perspective" give them an excuse to be blind to the truth? No. It should not. It's mean. It's a form of bullying, really. And that further poisons everyone in the family.
It's time for non-lyme family and friends to open their eyes and their ears - and be open to truth.
If someone says they are not feeling well enough for something - or even just not up to it - believe them, for crying out loud. They should not be put on a witness stand to defend their actions. -
[ 05-12-2010, 03:40 PM: Message edited by: Keebler ]
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merrygirl
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posted
not trying to argue ... and I am on the same team
But I feel like sometimes us sick people get a little self centered and focused on this disease so much that we do forget other things and people in life. Believe me I do it all the time.
Keebler- If your not willing to see it from someone elses perspective, then why should anyone see it from yours?
empathy goes both ways
I think that no one is going to listen to you if you are too busy always talking.
this is not directed at MB or anyone just my opinion.
we are not the only people on earth
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Keebler
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posted
- He's asked them to understand and learn more. They've not learned about it. So they can't possibly see it from his perspective if they've not even learned about what the situation is. If they won't open their eyes, they can't see. But they can't then say nothing is wrong if they won't open their eyes.
Beyond that, if one person can't make an event - for whatever reason - who is it to judge that person? He couldn't make it. It should be that simple. His decision. Other perspectives about if someone really could have attended an even or not revolve solely around judgement.
Only the person who has to cancel an event can truly know why. Others just need to trust their decision. It's not up for a vote. It's not up to them to speculate or judge. No one else can possibly know all involved in making a decision about attending any event.
So many of us have to cancel - it's not up to others to agree or not but, if a relationship is solid - there should be trust that the one canceling has a good reason, even without having to detail that.
R.S.V.P. is supposed to mean "attending" or "not attending" - no explanation needed. To add "with regrets" is a nice touch and that was done. But that part seems to have gone unheard. -
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merrygirl
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posted
I cancel events all the time so I can relate.
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METALLlC BLUE
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posted
Guys, I really have come to a point where clearly there is an impasse. Reasoning with people who are unreasonable is not possible, no matter what their intentions. The road to hell is paved with good intentions, right? The reality is, I'm sick and I barely made it to Italy. I'm now flaring up horribly and everything hurts. I dealt with enormous stress all week. I couldn't possibly extend myself even an inch over what I knew my limit to be. My priorities were sane and appropriate.
My PCP left the practice she worked in between my scheduling my trip and her prescribing my medicine for 3 months. I wasn't informed until 2 weeks before my trip. The doctors at the practice she left said they'd continue to fill the prescriptions until my PCP was established at her new practice. When I called to tell them I needed 3 months of xyz, they told me "no". They told me that my records demonstrated that I was being treated in a fashion that was not in line with their practices stance on my illness. They said that even still, asking for 3 months was too much to ask.
So, I called the other practice, and they told me that my PCP wasn't starting until Mid May. I was leaving for Italy on May 10th. They told me they could not help me.
Now do the math. How would I get my meds? It worked out in the end, but this was only one type of stress I was facing. I made numerous phone calls. I had to track down my PCP on the internet and get her personal contact information so that I could get the help I needed. That is sad and pathetic. I had to interrupt her personal life. Neither practice would get in contact with her so she could be informed. Once I contacted her she was more than happy to help me, but everyone stood in my way. All the people who are trying to help.
They are still the enemy, whether I understand their point of view or not.
My brother is the enemy. My mother was the enemy. All who claimed to support me, but stood in my way claiming they have my best interest in mind -- yet harm me, whether with psychological threats such as blaming me, attempting to guilt me or otherwise force my hand to do things that serve them and not me, are unacceptable.
Those who do wrong in this world always believe in their core that they're doing what is right.
It's either me or them. I'm not accepting the unacceptable.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
sammy
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posted
METALLIC BLUE, I'm sorry to hear that things have been so stressful for you lately.
I hope that you will be able to rest and get the most out of your treatments in Italy. Try to forget about all the stresses of life here.
Feel better and enjoy your trip Posts: 5237 | From here | Registered: Nov 2007
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Hoosiers51
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posted
Can't you get meds in Europe without a prescription? Not sure about Italy. Worth a shot. Might as well get whatever of your regular meds you can find there, even if you can only find half of them.
Also, people who have done the Bionic have stopped their meds anyways, right? Not sure when you are staring the Bionic. You might just want to spend a month detoxing before you start it. I would ask Sixgoofy what she thinks.
Posts: 4590 | From Midwest | Registered: Jun 2008
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MariaA
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wow, I'm sorry to hear you're having SUCH a horribly stressful time, Metallic Blue. I can't even begin to imagine trying to plan a trip like that, and I think you're sicker than me. I think it's good that you have a place to vent about it, and that there's nothing wrong with feeling frustrated and making the decisions you're making about how to relate to etiquette, whether about family members, or about tracking down your PCP.
-------------------- Symptom Free!!! Thank you all!!!!
METALLlC BLUE
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posted
Unfortunately, I can't stop all the meds I'm on. The consquences would be devastating. I can stop all antibiotics though and I cut my routine to the bare minimum. Only the drugs I have no choice but to take.
I've done a ton of detox. I have Pekana with Toxex, as well the infusions that are used with the Bionic.
Can't gaurantee success, but I'll do my best.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
merrygirl
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posted
best of luck! I hope all goes better
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seekhelp
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You're doing the Bionic 880? WOW!!!
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METALLlC BLUE
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posted
Still haven't started. How depressing is this? As a result of all the stress that took place, I had a massive Crohn's Disease flare up in another country, without health insurance and can not begin the Bionic until this is put into remission.
We didn't even know what afflicted me at first. We thought kidney infection, kidney stones, blocked colon, collitis, Crohns, muscle strain - a whole list. But since I'm practically a god damn doctor I knew my options were likely antibiotics, fruit shakes, let a stone pass, - you know the drill, and take anti-inflammatories up the *** and down the gullet. So I left no stone and treated for everything. Luckily my girlfriends parents had Levaquin, suppositories, Nexium, VSL probiotics on hand, and the prescription drug Asacol is pretty cheap to buy here. We bought heel drops too but I didn't use them much. I had great results with them when I used them for my G.I. system a few months earlier. At any rate I've lost about 15 lbs. I'm telling you, this is a great diet people. The First Communion weight loss diet.
My bowel aches like hell but is healing exceedingly slow. We're almost there, but it's been 2 weeks wasted. I still have plenty of time, but I've literlly been bedridden this entire time.
So, this is how I feel. This is Total bull****. I blame them (family)all for this, and I am angry. This is why people like that are our enemies. The doctors who try to prevent us from treating, those who force our hand, etc.
I will get thru it, but this is the entire reason from the beginning that I didn't go to that God damn communion. It would have tipped the scale and I knew it. I know my body well, and when forced to, I push it almost to it's breaking point, but never ever because I choose to for something like a "gathering". I only do it, such as to take a trip to Italy to get a special treatment after I've spent 8 years doing everything else and failing.
So yeah, **** them for this. It hurt like hell too, it's the large colon right next to the terminal illium (appendix area), in'fact it feels just like an appendix that needs to go, except mine was taken long ago.
By next week I should force it into remission and begin. Frustrated, very frustrated.
Ending Vent
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Ann-OH
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posted
You wrote: "I only do it, such as to take a trip to Italy to get a special treatment after I've spent 8 years doing everything else and failing"
What kind of special treatment are you scheduled for in Italy? Is it for Lyme or for other conditions or both?
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It's the Bionic 880 for treating Lyme Disease. My girlfriend bought one and has all the supplies to treat me the way a doctor in Germany is treating it.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Good luck with your treatment over there! Hopefully your G.I issues will heal up and you can enjoy some good Italian food at some point while you are there.
Just out of curiosity did you discuss the Bionic 880 with your LLMD and if so what was the reaction you got? Do you feel you exhausted all medication options with your doctor?
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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Carol in PA
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quote: I blame them (family) all for this, and I am angry.
Um, it's your family's fault that your body reacted like this?
Forgive them. You may have a better chance of healing if you can get past this.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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METALLlC BLUE
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quote:Originally posted by unsure445: Good luck with your treatment over there! Hopefully your G.I issues will heal up and you can enjoy some good Italian food at some point while you are there.
Just out of curiosity did you discuss the Bionic 880 with your LLMD and if so what was the reaction you got? Do you feel you exhausted all medication options with your doctor?
IV is my last option with their abilities. I've seen 3 LLMDs, and I already did IV in 05. Ended up with Sepsis, and the results only lasted a few months. I've done all their alternative and conventional methods. Detox, Metals, Co-infections, you name it. The Lyme is what won't quit.
I did talk with them about what I was planning. I told them it was this first and then if it failed I'd go to the Rife machine. She was supportive and agreed that it was time to move to the fringe. It's sad really, they tried so hard, but in the end she said, sometimes people just don't get diagnosed soon enough and don't get well on any of our treatments. She was cool about it, but the other main doctor of the practice (She's the PA) is a douche and implied that it was my fault the treatments weren't working. He told me to go to the IV or else, basically.
That's a real douche move. Anyway, she told me to keep in touch if I needed her in the future and to update her on how the treatment works, what happens etc. I do respond to basic cyclines sometimes and get 5-10% improvement, so it's always a fall back if nothing else works.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
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posted
Oh, it's also important for people to know that I had another Crohn's Disease Flare-up "after" the one I talked about here. It happened June 1st.
The stress of the trip combined with the miserable difficulties between my brother and I resulted in exactly what I worked so hard to avoid by canceling a week in advance for the First Communion.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It's now December 15th, about 8 months after the original post of this thread.
My brother flat out told my mother that he loves me, but that I need to grow up and stop being a baby (He thinks that my behavior as a chronically ill individual is just "immaturity". My brother is 12 years older than me, so he didn't live with me throughout the severe regression period)
He told my mother 3 days ago that she needs to stop babying me and doing everything for me (She's my PCA, also known as a Personal Care Assistant, that the state pays for. My mother is a trained home health care provider (coincidentally) and has over 30 years of experience. He doesn't seem to want to understand that fact. He simply sees a mother doing everything for an immature 33 year old male.
He told my mother that he does not believe Chronic Lyme Disease is real (in spite of previously telling me he did believe it prior to the first communion issue). He watched Under Our Skin and was convinced two years ago.
I had totally given up on my brother after the immense stress I experienced prior to leaving for Italy. Once I arrived in Italy the stress caught up with me and I fell terribly ill. Controlling your stress and emotions is nearly impossible when you have neurocognitive and neuropsychiatric Lyme Disease symptoms, so I did my best but still ended up in big trouble.
I've decided, after being pushed by multiple sources to give my brother one last chance. I have sent him a copy of Cure Unknown by Pamela Weintraub. It is the only thing I haven't sent him. He watched Under Our Skin and read some articles I sent him.
Since my brother is a Physical Therapist and works closely with doctors at Hartford Hospital, he asked a lot of questions. They convinced him that Chronic Lyme doesn't exist. He probably tried hard to find any professional within his access, and all probably denied it. So it is understandable to a degree regarding who he would believe.
However, given I am so ill that I can't travel to visit, if he does not accept this disease, then he will be incapable of having a relationship with me. Lyme Disease is unfortunately the underpinning of my entire life. It is all consuming and a terrible thing to live with, but I don't have the luxury like "some" Lyme patients who can still function and work part time.
I find I am judged a lot by Lyme patients, as well as people like my brother, which I find extremely odd. I've been ill since I was a little child, and I was diagnosed at age 24. I've treated the disease extensively since then, and I am now turning 33 shortly. I have seen Dr. D in MA, Dr. H in MA, and Dr. H in New York. I have used all combinations of therapies and treated adrenals, thyroid, detox, Cowden, Mld IV Vanco, and on and on -- I did it all. I recovered with a few treatments, but quickly relapsed for a variety of reasons.
IV Vanco: Developed Sepsis Bactrim: Developed Skin Changes Tetracycline: Only brings me to a plataeu which never increases past 40% function. Drug eventually wore off Doxycycline: Same as Tetra Malarone: Stopped Night Sweats. Used for one year. Discontinued, and symptoms returned.
I've tested positive via Quest Labs for CPN, MPN, RMSF, and showed bands on a number of Labcorp and Quest WB. I tested CDC/IGENEX positive on their Western Blot. Clinically diagnosed with Bartonella and Babesia.
So, after all I've said, there is no possible way for me to overcome this wall. At best, he suddenly accepts the material in the book I sent or I miraculously recover from Lyme. Even should I recover, I could forgive -- but would it even be worth it?
I can understand that he has reasons that he sees as legitimate for taking his position, but I have mine as well.
In the end, I await to hear from him about the book. I paid to overnight ship it from Amazon just a few minutes ago, and I left a small note inside saying:
Mark, FYI. Share the book with Tina if you wish. Pamela Weintraub is a scientific journalist for Discover Magazine. The truth is complicated unfortunately.
Best Wishes, Michael
I sure hope I'm doing the right thing. It's so hard to give up on family, but he abandoned me when I became ill, stopped calling, and now this. I... just can't take it any further.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
You have done what you can. No one needs that. I'd move on. I know easier said than done. If all that didn't convince him, no book will. The book is good, but not that good! He will always trust his medical associates more than a writer.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Well, my family believes I am sick. But that is all they see me as now--a sick person, a charity case. Not in the sense of money, just a person who might need their help, but doesn't ask for it, and mostly does not need it. Not thought of as good company, not wanted except when they are offering to do something for me. But I'm not sure if there was all that much togetherness before this. The sister who prefers the company of strangers and can talk to anyone for a long time....except family members. She has no interest in our lives, no interest in sharing hers.
So, sometimes personalities in families were there from the start, and unless they were really good all along, they will get worse when sickness intervenes.
I have not heard from my brother in six months. No emails, no phone calls, no reply to my email. No one is this busy.
Sick people are shunned. When you get sick, that now is all you are in many people's eyes.
So, hard as it is, you need to stop expecting an apple on an orange tree. The stress of these expectations can't be good for your health.
[ 12-15-2010, 06:23 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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Carol in PA
Frequent Contributor (5K+ posts)
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Michael, It's a long book.
I wouldn't expect to hear from him for a while. If he reads it.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
If people's lack of support is actually hurting me so much emotionally that it makes me sicker, I avoid them as much as possible.
I think you need to just avoid the subject of Lyme and your illness with your brother. In my opinion, nothing will get through to him, so you might as well not try.
If you see him at family functions (and I realize you are very sick so you probably go to very few, etc...that's why i say "if"), I would just go in with the mentality that you will talk about things like the weather or the news, and not even mention your illness. Because I find that with some people, it isn't worth it.
Even though you say, "if he does not accept this disease, then he will be incapable of having a relationship with me." I don't really agree technically, though it depends what you mean by "relationship." I would say you could have a very detached relationship....like the kind of relationship I have with my hair dresser. "Hi, how are you? Did you see Bravo last night? Okay, see you later." It is unfortunate, but I think that is what it is going to have to come to.
I wouldn't completely shut him out of your life. I wouldn't make it such a black-and-white issue. I would just stop sending him things, give up on that aspect of it, and just be civil when you do see him or speak to him.
Anyways, this is obviously causing you a lot of distress, and I'm sorry for that (it sucks, I have been there). Try to not let what "haters" think occupy your thoughts. Even though he is a blood relative, your brother, so I'm sure it's tough, and offensive to you as a person, to have a family member be so stubborn. Lyme is like politics and religion....there are some family members you just can't "go there" with, and I figure, might as well accept it and move on, then try to change them.
I know I am making this sound more simple than it is, but I really think that's how we (people with chronic Lyme) need to look at it. I have some haters in my family too. I don't go out of my way to speak to them, but I have learned to be civil with them, so as not to make the situation more dramatic than it already is (meaning, the lack of drama is for my own benefit, because drama makes us sicker).
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
It sounds like he is feeling neglected somehow and that is his issue that he needs to come to terms with.
You are just dealing with you which is what you need to be doing.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Thanks for all the PM's and point of views here. I won't get through this process easily, as is so evident. I just don't know how to let go.
He's angry that I don't visit. I'm angry that he doesn't visit. He's angry that I don't call. I'm angry that he doesn't call. He's hurt that I've abandoned him and his family as "The uncle/brother" I'm hurt that he abandoned me and refuses to (or is incapable) of having empathy for the reason behind that.
When you bottom-line it, I'm seriously ill with a disease that often prevents me from picking up that phone and especially from visiting people. I don't even call my best friend. It's too overwhelming and exhausting!
Chronic Lyme Disease is an evil ****, and it's taken so much away. I'm just asking for a little empathy and respect from someone who lives in a beautiful big house, has a family, has his health, and doesn't live that far from me.
I'm sick, what the **** is his excuse? You know what I mean? Well, mostly I'm just venting now. I know the answer to the questions I keep asking both myself and others. Still, it helps me to keep hashing it out, because otherwise I just tell myself "Let it go" and then what really happens is that it just stays inside my head and turns into bitter resentment. Gotta just keep getting it out until it's out of my system. It's not like I haven't the cognitive faculties to understand the concept that you can't control people places or things. It's not that I can't clearly see that he has "good" reasons, from where he's coming from, because how else could it be? He has to believe inside that he's doing what is right to hold so tightly and stubbornly.
Somewhere in the middle there is some truth that is obscure, that I can't quite put my finger on. I can't give him what he needs because my disease prevents it.
I tried writing him e-mail too, since I seem to be able to manage that ok. He wrote me back with a single sentence saying "Michael, This is my business e-mail, don't send it here again. Send e-mail to my home address."
So.... I did. I sent it to the other, and he wrote back and said "Got your mail."
We just can't seem to communicate. It's like Cool-Hand-Luke. What we've got here is, a failure to communicate. Some men you just can't reach. So you get what we had here last week, which is the way he wants it... well, he gets it. I don't like it any more than you men."
"Got your mail." That's the last time I heard directly from him.
*sigh*
Well, with last resorts and lose ends tied, the book should arrive tomorrow about noon. I may never hear from him again, but I'll know this.
I sent him the best available science: The article I wrote and the studies included), Under Our Skin, ILADS Brochures for the kids (My nephews), and now Cure Unknown.
I don't think that if I was well, or better yet, never had Lyme Disease, that we could even carry on a relationship that ran deeper than a spring morning mist on a black tar paved drive. I'd accept it, but only for my nephews, since I'd have to go thru my brother to get to them. They're cute as buttons, really smart boys and they absolutely adore me, which is what has led me to put so much effort into this over the last few years.
That's also why I was so unhappy about missing the original first communion.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
Like my sister, your brother would not be available for you under any circumstance. You just said that. So, sickness will only make that more true. Hard to accept, but sounds like you need to. Any chance of a therapist to help you work thru this?
Posts: 8430 | From Not available | Registered: Oct 2000
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momindeep
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posted
Could your brother be jealous because your mom gives you so much attention?
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by momindeep: Could your brother be jealous because your mom gives you so much attention?
I think that is part of it. Since we're 12 years apart, my mother wasn't really there for my brother during those years. It wasn't until my mother married "My" father, that I was born, and she then had more time and resources available to take care of her children.
Since I was the youngest, even when she was able to, she had to take care of "the baby aka Me" and those years my brother was still on his own. So, in total my brother was probably moderately to highly neglected for 16-17 years of his early life.
My brother went on to be the perfectionist. To get approval he had to demonstrate he could be successful. That's what I think.
I have a counselor. I've been working on these things since I was born -- can you imagine that? My brothers issues go beyond just not understanding the disease. He has multiple reasons for neglecting me and resenting me. He hasn't had any counseling except a brief stint about ten years ago when his wife cheated on him. He and she did about one month of Cognitive Behavioral Therapy and he then proclaimed himself cured.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'm breaking my post up since it's so huge. Hope it helps people to follow along.
I didn't say much, but other family members, as well as very close friends to my brother told him he was being mistreated. My brother quickly abandoned relationships he'd held close his entire life. He defended his cheating wife and took his anger out on those who pointed out the fact that they didn't like what she'd done to him.
I think a lot of this behavior is complicated. I mean, I've been in this thing my entire life, receiving therapy, and I still don't fully grasp the intricate details. My brother was abused in so many way, abandoned, neglected, lied to, and all around was scarred from an early age.
If you were to see him on the street, at his home, or at his job and you didn't know him, you'd literally think he was almost perfect. He looks like he has it all, and I don't know whether he really does or not -- I feel like he does, so sometimes I guess I am jealous of his health and success.
I looked up to my brother my whole life, since I was the little brother. So for me, from birth I did nothing but chase him. I wanted to hang out with his friends, with his girlfriends, with his teammates from sports. He did the opposite. I was the little annoying brother that he was always trying to ditch. I think he secretly resented me but also had the typical feelings of an older brother. So those conflicting feelings come through.
From his view he thinks: "I love you, .......but that's all I feel or think about you when I'm not jealous, resentful, disappointed, annoyed, etc."
Another factor that contributes to our relationship woes is that when my father entered the picture, my dad gave my brother a lot of attention. He was "good" for a couple years and took my brother under his wing as if he were his own. Unfortunately, my father was a raging alcoholic who liked to abuse children in more ways than I care to elaborate.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
My brother apparently was abused for many years when I was about 3 thru the age of 7. When my brother finally left for college at 18, I was only 6. My father had been abusing him when I wasn't looking the entire time. My brother told my father that if he ever hurt me the way he'd hurt him, he would never speak to him so long as he should live.
Inevitably, my father did just that. My brother never spoke with him again. It has been 27 years. My father never abused me in front of my brother and vice versa, so my brother doesn't know that I too was being hurt a lot from the moment I was born until he left for school.
This complicated story is so sad. If I wasn't so ill, I probably would have easily gone on to live a normal healthy life (since I'd already been in therapy), but instead I got really sick and for awhile, very needy, since I was dying. My illness was likely contracted around 2 years of age, at least that's what my LLMD believes. I didn't start having very severe obvious symptoms until age 9, and at age 9 my brother had already left the house. At no time between then and now did I live with my brother. Sure we saw each other occasionally as my illness waxed and waned, but he felt I just needed psychotherapy. He didn't know I'd already been doing it since age 5. My mom tried to protect me, that's how I began the therapy roller coaster. It helped down the road, but it's hard to be in therapy while you're being beaten at home, and then to go in and "make progress."
So, to get to the point, I know somewhere inside my brother has very good reasons for feeling the way he does, but since neither of us can (or want) to bridge the gap, we'll remain at the impasse.
I don't normally share much about myself in this whole world of Lyme. Mostly I just help others, but I have a brutally dark past, an equally tragic Lyme-story like most here, and the good fortune of having worked through about 95% of that darkness. What remains is my impasse between my illness and my brother which I'll likely remain deadlocked. I'm working hard to coming to an acceptance of it, but just like with Lyme, how can I accept something as it is, without trying every single option?
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
My psychiatrist (treating Neuro-Lyme) recently told me: "Don't you think it's time you stopped making Lyme the center of your life and stopped trying all these crazy treatments and just accept things as they are so that you can go on to have some type of quality of life?"
You try to answer that question when you're homebound and being held down as if some enormous muscle bound wrestler had you on the floor in a head lock and leg lock at the same time. You try to find some sort of quality of life in that and "accept it."
So no, I can't ever accept that Lyme is something other than what it is -- the underpinning of my life until it's controlled enough to allow me to manage greater levels of function.
My brother on the other hand, I am held down by a different wrestler. My mother who is my primary care-giver by the state (and...as mom) has been trying for a lifetime to repair the damage she did to my brother. She has finally made a lot of headway and has a relationship with him. She's very unhappy that I haven't and constantly tries to convince me to "push myself" to go down at least once a year, just try...." She gets into fights with me, which I firm state I am not interested in pursuing. I tell her I have set my limit and I don't want to talk about it. For whatever reason, she keeps pushing and pushing.
I have a lot of patience and compassion for people, especially people in my life -- but Lyme seems to sap that strength greatly, especially when stress comes into the picture. Stress in the form of constant begging and constantly trying to coax and manipulate me into seeing my brother! Since I won't "give in" she just turns up the furnace and starts yelling or telling me what an awful person I am. It's like she goes from being an angel, to a total ******* whenever my brother is involved. All other areas of my life, me and my mother are tight as can be, but something inside her just explode into madness on this one and only issue.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Your mom could have a boat-load of guilt and has not, or is incapable of, forgiving herself?
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Man, pretty terrible. I am so sorry. Are you sure you want this kind of information on a public board? As we have discussed on another thread, all kinds of people read it and some of them are not nice people and could use it against us.
Putting all this into words is sometimes therapeutic, but having done it, maybe now just copy it off into a file and delete this thread?
Lyme kind of intensifies any relationship problems we have already in our lives. There may be some who have no issues in their lives and complete support from everyone they know, but that is probably uncommon.
Posts: 8430 | From Not available | Registered: Oct 2000
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