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Chronic illness, financial stress, feeding constant worry- not doing this well

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Posted 4/9/2015 2:33 PM (GMT 0)
A lot of venting here this month, me included. I've about had it. I'm just getting this out there even though it wont fix anything. I'm trying to find something positive, where is it?.

There are people that spend all their money trying to feel better, some without much luck. I told myself I will NOT go broke doing this, since at 50, financially recuperating is likely not going to happen. I almost get sick now from spending on near worthless treatments, overpriced supplements ect. This feeds the insomnia in the form of constant worry probably more than I'm aware of. I just want to live pain free, never thought it would be so difficult to achieve. Even though I function (some days barely), it gets more difficult every year. As a "realist" this gets harder and harder to ignore, I'm not one to fool myself with my head in the sand. As a natural problem solver, I have been unable to crack this so far - and this totally baffles me. As a past successful hard core athlete, I only have memories of who I used to be.

I've seen a few posts recently here about lack of progress with their chronic condition- I completely understand, it chips away slowly..

On a positive note for those younger ones, I really, really, hope you get this figured out so you can enjoy the rest of your life like your meant too.

I realize this post was pointless. Oh well.........
Posted 4/9/2015 3:53 PM (GMT 0)
Hi astroman, I'm 50 also. ... and I've been walking around feeling like you do the past few days. Andrew is one of those younger ones, 16.... sick initially at 11 and it flared big time just after he turned 15. Now he's approaching 17 and I thought by now with spending every once of effort I have, reasearching to death, keeping him on strict track (OK, occasional splurges when he's losing it - Tinkyada once a month now)... I'd have him so much better.

He was 9 out of 10 at Christmas, then 2 months ago started treatment for candida and bart and has not turned another corner.

I wish I could help all of you. I know you have been at this with intelligence, diligence, everything you have and you are so knowledgeable, dedicated and strong. I have always found it amazing and inspiring.
I thought you should know that.

It seems like there is nothing a dr. could tell you that you do not already know and have not already tried, but there must be something left, something to break open some deeper healing for you.

You should take some time to wallow, rest, regroup, and maybe meditate, and maybe in the quiet, something you did not think of will come to you.

I'm feeling like I need to give up on Andrew. I have tried so hard. The only thing left at this point that I can see is to increase the rifampin and add a biofilm and/or cyst buster. But other than that, we are from where I stand, at the end. He has it all, but is not better. I was thinking maybe chronic tonic. Not sure he will stand it, or Cowden's protocol, but if he's at school, the lunch dose will be hard to get him to take.

Nothing you have to say is ever pointless. We are all in this world here and now for some reason (who the heck knows what that is!... but here we are nonetheless!) so we have to make the best of it and just get through the days.

I have been down in the dumps for a long time. Three well and quite accomplished children, but none of that seems to matter when this one is "broken" and miserable and I can't fix it.

I write things down and then I don't hash them out in my mind, over and over, knowing they are recorded already somewhere and I can adjust them, but don't need to compose them or relive them. Maybe that would help? Sometimes reviewing it, something comes to me that I missed in the protocol or something. You could try that and maybe it would help you sleep better. Also, benedryl has been my new "go to" for sleep.

Always vent though, no use in wallowing alone when we can all join the pity party - it's always better in numbers and to know you are NOT the only one walking the road alone....

HUGS! ... and just get through this day, or this moment....ei
Posted 4/9/2015 6:38 PM (GMT 0)
Astro...you can't give up. If you do, this stupid, awful, no good disease we call Lyme wins. And you're not a loser from what I can gather. None of us are, if we were, we wouldn't be here, trying ever single freaking day to do something, anything to get better, to grab and hold on dearly to the life we so feverishly call ours and the memories we treasure, which we dream to regain. NOTHING myself or anyone here can convince you to keep fighting, it has to come from within. I know venting is sometimes the best way to get frustration off your chest, and believe me, I vent alllllllll the time. I would say on a daily basis I wish things were different, with my injuries, tics, and not getting sick. I'd have the physique I want to know and used to have, the energy, the relationship, the life I yearn for so badly. But there is one thing that keeps me going, other than my family and friends pushing me...it's hope. It's hope that a new day will come and I will look back on this hellish nightmare and smile. Will we ever be the same person again? Probably not. But that's not a bad thing. Think about the good this experience has brought you.

Yes, the financial stress of being sick is absolutely absurd and since the insurance companies are so darn corrupt they're of no help with keeping our wallets a little more full. Maybe you can try another protocol, another herbalist, acupuncture, anything else that you may have not crossed off your list? But you're not done yet Astro- we won't let you give up. We're in this together :)
Posted 4/9/2015 7:07 PM (GMT 0)
I know what you mean, I'm 54 and feel like my late 30's, 40's and now working on my 50's has been taken away. And I believe you've been dealing with this longer. I won't let it get the best of me and please don't let it get the best of you.

Before I knew what was wrong, since other doctors told me it was depression, I sought out Ayervedic medicine. Bought my herbs from www.amritaveda.com, they used to do a tour in the US and visit like 10-15 cities but they haven't in awhile. They just got a new Ayervedic doctor working with them and I think she will do Skype visits. If they start touring again I will definitely do it again, I felt almost normal, it didn't kill the bacteria off or maybe it did but I relapsed then.

Also might look into doing the bee sting therapy, you can do it to yourself. Cost seems pretty low and they say it totally kills it all. They say it cost 32-40 per month. i hate the fact that the bee dies after it stings you but I heard there life cycle isn't very long anyways.
Posted 4/9/2015 7:23 PM (GMT 0)
Astro:

Have you ever treated Bartonella?
What other infections did you treat besides Lyme?
Also what are your worst symptoms if you had to pick top 5-10 that give you the most trouble?
Posted 4/10/2015 12:43 AM (GMT 0)
I'm sorry Astroman. It is very hard dealing with all of this. The financial toll and stress is awful. Maybe you have made more progress than you realize. I hope so.

Hang in there! If you want feedback or suggestions on what you have tried, feel free to let us know.

Keep trying. You will get better!
Posted 4/10/2015 1:12 AM (GMT 0)
Astroman, I am 59 and worry every day if I am going to get through a work day and what is going to happen to me financially if I can't work. I was supposed to travel out of the country and I had to tell my employer I couldn't do it. I was hired 6 months ago. I was on unemployment and it ended and I had just finished a 30 day picc line and felt good after months of being really sick. It didn't last long and I just got sicker and sicker but no one noticed at work. I was so sick last week and broke down sobbing so now they know......maybe it's a good thing. I cry almost every day going/coming to work. I had so much hope a few weeks ago and will start a new treatment next week but am so apprehensive now if I will ever get better. I want to be hopeful that there has to be a cure on the horizon. I am afraid I am going to die from this. I have panic attacks.

I am so sad for all these young people on this forum who can't enjoy their lives. What if the 15 day treatment works? Why aren't we all trying it? Is it cynicism because of the Dr involved in it? I am bringing a copy to the specialist I will see.

When I feel like you do astroman, I tell myself it's the Lyme talking because I am a fighter and I don't give up or give in so please don't you either.........!!!
Posted 4/10/2015 1:53 AM (GMT 0)
Your post isn't pointless. You need people you can vent to, people who will listen and understand and give you support and encouragement. Just keep putting one foot in front of the other. Hang in there.
Posted 4/10/2015 2:06 AM (GMT 0)
You hit it on the nose Astroman when you said: "As a natural problem solver, I have been unable to crack this so far - and this totally baffles me"

I have coincidentally a couple times this week found myself telling my sisters (aka my BF's) that it kills me because I have always been able to figure out and solve ANYTHING in life but yet this lyme crap I have yet to.

You are not alone. There are positive things. Even if it is just the little things. Quoting Gandhi: "Where there is love there is life". Even if it is the sun shining on your shoulders on a dark feeling day.

Try to just take one day at a time. The unknown of the future with illness gets my nerves all rowed up too if I think about it too much.

If you have bad anxiety, deep breathing has helped me immensely. There is a *certain* way to do it properly though that I learned online.

Regarding you mentioning the posts where some people mention the lack of progress...please remember that this is unfortunately how it is while the lyme 'storm' is still brewing. The overall majority of people who have gotten well no longer are on the forum (with exception of the very kind few that have hung around) so the forum mainly consists of sick people going through this needing support.

Your post was not pointless. It HELPS to vent anyway you can. Thankfully we can all relate here and certainly understand.

~Hang in there~

Hugs & Healing
-Courtney
Posted 4/10/2015 2:50 AM (GMT 0)

happyjo said...
Astro~No one understands who hasn't lived thru this. And those financially independent-Lucky souls, indeed. I have found your posts very thoughtful--and now you are venting for many.

Courtney~love the Gandhi & cried reading (quality of life, tho?).

Hugs & hopes to all here.


HappyJo-yes, despite the lack of quality of life....sometimes all I have is the *love* that keeps me pushing & going (my family and my dog!). The quality of life is always affected with any chronic illness. Its just how it goes until we get to the other side ya know...

The chorus of this song reminds of what we have to do sometimes:
/www.youtube.com/watch?v=jzzbLK3XOY8

....Ride out the waves~~~~~~~~


xx's-Courtney
Posted 4/10/2015 6:13 AM (GMT 0)
I think what go me on this was, well, spring. Hearing peoples plans, travels... whatever. And you all know what its like hearing that while your still stuck just wondering what the next day will bring. Not to mention just trying to keep up on home and auto maintenance which I've always done myself - but now only when my body will agree to do it. I still kick myself in the but for not pursuing this more 25 years ago (the oval rash), even though the medical community blew me off back then. The first clinic visit is still etched in my mind, complete with symptoms and the rash....."your fine, get some rest". More visits got me nowhere. The same common story.

The last round of ABX was pretty rough, and threw my body out of whack more than past trials. In the process of recuperating from that and gut Candida, I, of course, had high hopes for symptom obviation. Energy levels and sleep patterns still change weekly, body pain is unpredictable. At least my hand tremors seem to be mostly under control, (but still weak), that was freaking scary. I need to fix the candida and figure out some gene mutations before maybe venturing onto herbs on my own.

The big 50 is like a billboard saying time is running out, cause it is. My forties were a lost decade dealing with this. There were things I wanted to do, but couldn't. Funny thing is, as beat up as I feel on the inside, people still guess I'm a lot younger, its NOT from good genes either.

Gotta say this new 15 day lyme fix sounds interesting, just need one for each Co-inf out there.
Posted 4/10/2015 6:34 AM (GMT 0)
Maybe it's also a matter of perspective and the situation you are in. I would give anything at this point just to know my husband will survive.
Posted 4/10/2015 6:44 AM (GMT 0)
Astroman, don't give up! My son is doing better, but a lot of huffs and puffs and still a lot of pain sometimes. But we are not getting this get in the way! I am very determined, we are going to have a great summer and we'll take things as they come!

I would definitely try herbs if I were you. My kids are doing much better on herbs. And as you may have seen here, I was battling life threatening situations with my son with grand mals up to December 2014. TOnight he went to bed pain free. No migraines that he used to get so bad that wanted to bang his head to the walls and die. No gut issues that he used to lay down on the couch with a heating pad, still screaming from the pain, hardly any body shaking left (he used to get seizure like activity from pain, when he would roll his eyes and his whole body would shake), he can stand on his feet now for longer periods of time and today and other days as well, he no longer dropped to the ground from weakness in his legs.

I don't know how long the 15 day lyme fix will take to be approved, but I would just deal with candida and take some herbs so it doesn't get out of control, and wait it out. I honestly think herbs are the way to go because they work on more levels and probably don't create resistance like abx, support organs, repair damage, kill viruses as well, increase immune function, and of course, are all natural. God did a better job than Pharma :) The proof is Trav--It worked for Trav! They seem to work for us, too, even though is too early to claim miracles. Miracles are happening in small doses already, though :)

Post Edited (Simela1) : 4/10/2015 12:47:46 AM (GMT-6)

Posted 4/10/2015 5:49 PM (GMT 0)
happyjo I literally just laughed out loud in my office at work picturing all of us lymies in a plane hardly able to move and screaming in pain- it just made my day.
Posted 4/10/2015 8:16 PM (GMT 0)
And a few words I hope to be encouraging to all - I had untreated Lyme for 40 plus years and yet I was able to heal once I found the protocol that worked for my body!!! You have to hang in there and keep putting one foot in front of the other, no matter how dark the day "looks".

I was considered an abx failure back during a time when herbal and natural protocols were assumed by all by a very precious few were saying it works. I was told by many well meaning members that if I couldn't tolerate the abx, I wouldn't heal - thankfully, I didn't listen.

Keep on working towards that day when you can finally say I no longer need treatments. It'll come if you keep working towards it.
Posted 4/10/2015 8:32 PM (GMT 0)
Thanks Trav :). Such a motherhen of the group! Any advice on wishing things were completely different and if x, y, z didn't happen I'd be back to the everything I wanna be doing (exercising, etc.) and living a normal, healthy life. Have you gone through this?
Posted 4/10/2015 8:38 PM (GMT 0)
........."picturing all of us lymies in a plane hardly able to move and screaming in pain"

- with hockey helmets on....
Posted 4/10/2015 8:48 PM (GMT 0)
astro I wasn't trying to be offensive! I hope i did not come off that way. I just tried to make light of a very dark situation :)
Posted 4/10/2015 8:52 PM (GMT 0)
Ha ha ha!! Boy the books I could write on that!! All the "if only's" and "I should have's" would out number everything else. If only I had been one of the ones with the Bull's eye rash, if only the doc's had known that RMSF could be in northern Idaho (where I was at the time) in 1970, just to name a few - sheesh!! And the "I should have's" are far more numerous!!

What you have to do is accept that you are actually quite sick, but will heal. Many patients - and members here - go through this. It's hard to have your life ripped away from you - or in my case for it to have gotten in the way every freakin time I turned around! But know that one day you will get it back, and then you can live your life again.

Accepting where we are in life is never easy, but it can and must be done to be able to get through this, honestly. Find the little things that you can "celebrate" - even when you don't feel like it. Go outside and sit in the sun for 10 minutes (unless you are on Doxy or Mino!!!) if that's all you can find. There is joy in your life -look for it.

Do you have kids or nieces and nephews that you are close to? Watch them run around being silly. Do you have family or friends that you can be with that understand when you say you have to go, you have to go? Go hang out with them for just a bit one afternoon or evening.

You can't let this defeat you mentally. I struggled with it mightily many times, but I always held on to the belief that life would be good again - it had to be. I found ways to lift my spirits when I was down, and sometimes the "old tried and true" ways didn't work for me, so I had to find other ways. Sometimes it was literally just watching videos of baby animals, because that will lift my spirits for just a few moments at least.

I "got back" a lot more of my life than I ever expected to considering I was infected for so long!! You can do this, because you have all of us here helping you!!!
Posted 4/11/2015 4:29 PM (GMT 0)
Personally, Mr. Mike, I'm ok with it. It's not an end, just moving on to another plane/dimension/ part of a life plan on the other side. As I love to tell my "children", there is something to be said for "eternal REST" - what could possibly be better than a giant NAP!?

So, not that I'm looking to rush into anything and I'm trying to make the most and best of my time here, but no worries, moving on is just part of the plan, just waiting for all the good things that come next! I know a lot of people who have passed and they were never unhappy on their way...
Posted 4/12/2015 4:58 PM (GMT 0)
[ happyjo - "with the helmet heads! Maybe a bus ride for us would be better? (That is filled with comedy, too, eh? Each person, from each state, carrying hands full of pills, theracanes, talismans...lol!). Ok, we will still keep that as plan B, k?? 15 days of hell, playing vampire from the sun, & then pour the tequila & begin the dancing!" ]

Sounds like a great story line for comedy, with Adam Sandler as the lead "Lymie"!

(and a hockey helmet fits him well per Happy Gilmore!)

--------------------------------------------------------------------------------------------

LMC - Yes, I've always said I can sleep all I want once I'm dead, but there's a few things I still want to do before that time comes.
Posted 4/12/2015 6:22 PM (GMT 0)
It's really tough isn't it. The ups and downs really get me. Perpetual disappointment.

Hang tight astro, you will get better. The spring usually lifts my spirits, this year is different. I'm right there with ya. I'm rooting for you
Posted 4/12/2015 11:31 PM (GMT 0)
Well, I don't know about you all, but I have a laundry basket of things to bring, so we had better have LOTS of storage space on that bus!! Plus I have food allergies, so we'll have to take food too - right? LOL!! Beverly Hillbillies don't have nothin' on us!! smilewinkgrin
Posted 4/13/2015 7:28 PM (GMT 0)
Well, as long as you pack my rocking chair, I'll sit on the roof then. smilewinkgrin

I came across this and think it's appropriate here as well:
themindunleashed.org/2014/07/7-things-remember-think-youre-good-enough.html
Posted 4/14/2015 4:52 AM (GMT 0)
Hahahahaha, you guys are too much.
Astroman, we understand your frustration. Keep trying different approaches and you will finally nail it. It is a roller coaster of frustrations, for sure.
I am treating myself and i have no idea of what pathogens were injected in me from that tick. None of the tick borne disease tests that i have done have come out positive. But i do not think about it because then i start thinking that i am fighting with the unknown and then i loose my healing focus.....just to wonder what is inside of me.
Vent, there is nothing wrong with it... I am right there with you, not going broke because of this.... It is tough, but we can do it.
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