Thursday, December 15, 2011

Giving Up

I'm done. I'm not even sure what I mean when I say that but I'm fed up, done, I give up. It doesn't help my attitude any that I'm crashing. It's not a horrible one but given all that's going on I'm surprised it hasn't happened earlier.

I had the colonoscopy Tuesday. I was up all night Monday due to the prep. The colonoscopy itself wasn't bad although it did hurt when they removed a polyp. I remember asking the doctor "is that supposed to hurt?" I don't remember his reply but I think they increased the versed. It continued to hurt and then I was out and don't remember the rest of it. I ended up having 10mg of Versed. I don't remember the ride home.

The GI doctor sent the polyp off to be biopsied and it came back premalignant so I'm supposed to call them first thing tomorrow morning.

I had a phone consult with my ME doctor today. I almost started sobbing on the phone as I told him that I'm continuing to get more discouraged and hopeless about my situation. I had to fight off the tears because I couldn't afford to pay for anymore time than I already did. He said that it sounds like right now success for me is just putting one foot in front of the other.

He was very concerned to hear that my problems with swallowing are continuing to progress. First it was just trouble with big pills, then I had to stop eating certain foods, and now at times even swallowing saliva is difficult. The other day I couldn't get jello down because the swallowing muscles just stopped working so the jello sat in my throat until finally I was able to swallow. It's a bit unnerving.

My doctor wants me to do the Patricia Kane protocol and get a heplock so I can do IV's at home. He said the PK protocol is good for neurodegenerative diseases like MS and ALS. He hopes that will help with the difficulty in swallowing or at least slow down the progression.

He thinks a big part of my problem is toxicity (including chemicals, toxins from viruses, bacterial infections, etc...). Once I get my body cleaned up then we would go back to tackling infections. Bartonella came up again. I said I couldn't tolerate the treatment. He said once I do the protocol I should be able to tolerate it.

I'm also getting tested to see if I'm a candidate for the KPU protocol. You can read about it here and/or here.

Because I'm under so much stress right now he wants to add in more adrenal support. So I'll start Ashwagandha and Cytozyme AD.

He recommended ginger root to see if it would help my GI symptoms. And he wants to test for parasites and believes that might be part of my problem. We'll also test for amino acid deficiency as well as other nutrient deficiencies. And he'll test me for a bunch of viruses.

My only problem is how am I going to pay for all of this. The testing will get paid for by insurance but the heplock and IV's?

I continue to have bad dreams about the break up. Even while in the relationship I would have a recurring dream where she would break up with me because she had met someone else and I would try to talk to her only to be met with coldness and apathy. Those dreams are still occurring. I had no idea how true they would turn out to be. I just want them to stop. I inevitably wake up out of the dream with that racy feeling.

My doctor believes that people who have been ill a long time end up with a body dominated by the sympathetic nervous system and this is why I'm waking up like this. The Prazosin should help with that. Now that I'm done with the colonoscopy and today got the crown on my tooth I can start the Prazosin. I told him my hesitation in starting it was the fainting. He recommended starting with half a dose and then increase it as I tolerate it better. He also assured me that fainting is not a common reaction even though it said so on the side effect profile provided by the pharmacy.

I need to find a place to live but haven't been able to find anything which is partly why I'm feeling so discouraged. If I had more money for rent it wouldn't be this difficult.

I've emailed lots of places. It turns out there are a lot of people on craigslist who are out to scam others. I've had a few replies from a guy supposedly in Africa who says of bunch of strange things and then tells me to contact whomever and give them all my information. Then there was the woman who wanted me to give her all the information to run a credit report and refused to provide any info until I had done that. Today I got a response telling me I had to be "God-fearing" or else he wouldn't rent to me.

Most people looking for someone to share a place don't bother to respond. The polite ones do and they are nice in the various ways they say they are looking for someone who is employed.

I have emailed everyone I know asking them about what it's like to live in various places. A high school friend moved me to tears when she said it breaks her heart to hear what's happening because she knew me to be one of the kindest and generous people she has met. She lives in Las Vegas and said the services there are terrible so I wouldn't be able to get any help with medical costs.

I suppose I should change the name of this blog to the Debbie Downer blog.

Things should get better one way or another. Apologies for not being cheerful or optimistic. Hopefully tomorrow will be better. I'll be glad when the Holidays are over.


Renee said...

Serously, Terri, you have every right to feel discouraged and down. You have been through so much. I am so so sorry, Terri and wish I could magically make it all go away. Sending gentle hugs your way tonight.

me/cfs warrior said...

Thank you Renee. It always makes me feel a little better when I hear from you. It would be great to have a magic wand like that for times like these.

Toni said...

Terri. I agree with Renee. You have every right to be down and discouraged. Just look at what you've been going through emotionally and physically. It's just overwhelming. I just keep hoping that every tomorrow will be just a little better and I have faith that one day soon that will be the case. That break will come for you...the break that you deserve right now.

Thinking of you with love. Toni

me/cfs warrior said...

Thanks so much Toni. I was moved to tears when you said 'the break I deserve right now'. It's all feeling too much lately.

It also helps me feel a bit better when I hear from you too. I know that you and Renee and others really get it and won't pathologize me for feeling down and discouraged.

linda said...

I have not forgotten to write you but my brain has been skidding for awhile...all these protocols I have also done in one form or another and now that I have been restricting these food groups. as I mentioned, tho extremely hard, I am getting improvements in my pain, cognition and that awful "internal" stiffening ... I will fill you in.

the C. is tuff! I too had the polyps but it was ok..just another due now I am too weak to undergo that prep again!! omg, it's awful!

I don't live in a town/city but on Sonoma mountain & the closest is Sonoma, pen grove or Petaluma.....mold issues as always in bay area. the best area up here is Sebastopol &i would live there if not up here. I have MCS so cannot be around much for long but if you are thinking this area, it's a cool place. I cannot say about assistance programs but there's a great co-op in SR ... my shrink lives in Seb, does community service for HIV
AIDS, mental health & would know what is avail. I will email her if you can tell me specifically what you are seeking?

it's late...tomorrow I will email you w/more info.

Teri don't give up... I know it's so stressful now but maybe it's a time of great change in store for you? we never time you might see things from a calmer perspective. the fact she left you is reason enough to have her gone. we need the support of stent people who do not walk! xox hang in hon, I'll check out what I can.

WV was BEGAN... see?! ♥

the end! :)
xox &tomorrow!

linda said...

STRONG STRONG STRONG peeps is what I should have typed rather than typOH'd!! ;)

tomorrow...hang in, there is light once the dreaded holidaze flee....sigh...too. much. stress. rest those adrenals.&now it's really good night!

Cusp said...

Agree with everyone else: you have every right to feel discouraged and thoroughly fed up. Who wouldnt be in your situation ? Sometimes it's time to stop being positive, putting on the brave face and just give into how you really feel deep down. keeping up the brave face just takes up too much energy. You dont have to pretend here because you are amongst friends.

Just try to take one day, one moment, at a time and keep writing/blogging/talking and you shall be held and suported until you can get back on your feet again.

Thinking of you (*)

Alison said...

Oh Terri, you have so many problems, odds are a few of them will be resolved. Seems like it anyway, right?

I've been reading all your recent blog posts but I am afraid I am a terrible commenter. Don't worry about the Debbie Downer stuff. If this is the way you want to write then good. I don't like that you are in this situation but your response is beautifully human and normal and in that way, reassuring to me and others who are going through or have gone through some of the same.

My wish for you is that your sister/s family keep coming through. That you find just one normal person to share an apartment with. Wish there was something I could do. I know the dreams are going to keep coming.

Pris said...

You're going through a horrid time. I so wish I could snap my fingers and make it go away. I'm sending my love.

Anonymous said...

It's sure rotten what we go through, horrible stuff. The only relief I had was partly with NAET (Nambudripad's Allergy Elimination Technique), some with d-ribose and creatine, burning frankincense, but one time I ordered some vasoactive intestinal peptide (VIP) from Anaspec, put some clean silver nasal spray in it and sniffed it, wow, I actually felt good. Unfortunately it hydrolizes in water, if I'm correct, and that's why the potency disappeared within a few hours, but to feel normal just that once, now I know that it's not me. Isn't 20 years of being sick enough?! Too bad I don't have any stable sources for that drug (Hopkinton pharmacy's version doesn't hold up to shipping, plus they put it in glass, which binds the drug). Hold on, you'll find some relief somewhere.... Most people can't even imagine the torture. May God bless our search. Jewels

Sue Jackson said...

Oh, Terri, I am so sorry to hear you're going through such rough times. It's amazing that one person could go through so much.

My son had a lot of trouble tolerating his Lyme and bartonella treatment, too, at first. We backed off all meds, started a protocol to help with detox, then restarted meds VERY slowly. At first, he could only tolerate 1 doxycycline pill every 3 days. He is now up to 1 pill a day, so he is making progress - slowly but surely. And you will, too.

Just remember that you are not alone - there are lots of us out here in the cyber world who understand what you are going through. I wish I could help in a more concrete way, but please know you are in my thoughts...


NewWorldAntidote said...

Hang in there, we all have bad times. I too wanted to give up more than once, but the battle is what makes life, well life. I, too, have resorted to supporting my adrenals in more ways than 1. Try bio-identical progesterone to replenish lost precursor stress hormones. It really helps, but do a little bit of research before using it. Also, check out my blog for more info on my journey and some supplements that I take for support. Keep on keeping on. NWA

KC said...

I can totally relate to how you are feeling. I could have written the exact same message. I hope you are doing better now.

Laura Tattoo said...

times when we feel we can take no more are soooo terrible, i know it! we're just holding on... how i wish for a miracle of truth in 2012. just sending love here from my little couch bed. ~laura

Maya said...

Terri, it's okay to be down and stressed and sick and tired. You are going through so much. Way too much.

My hope for you, is that three months from now, you'll look back at these bad times from a better situation.

In the meantime, expressing how awful you feel can be incredibly helpful. Sometimes writing it out, is working it out. It also gives the community a chance to wrap you in our cyber arms and show you love. Love and hugs from me:). I wish I could do more.