I'm tired of being tired

[redibooks]

Most days I do my best to know that even having the sensations of a dis-ease that I'm sick and tired of having, my life is ok and I have plenty to be thankful for, more than many. Then there's days like today.

I've had it. I'm tired of it. I don't want to feel even the slightest bit of crawling on, in or under my skin. I'm frustrated, I'm angry, and like other posts I've read, I want to put my clothes away. I can't afford to keep buying new clothes and shoes every 2 months. I want a pill, I want an end of this in sight, even if it means antibiotics for months on end. I've pretty well had it with the invisible symptoms. Not even writing out the vent is relieving the pressure.

I did put in a call to Dr Harey's office last week. I'm on a waiting list of 65 people just to be called and screened.

ugh

k

[jano]

I'm so sorry you are having a bad day redibooks, I know how it is - I've been there too. Getting on the list to Dr. H is the first step - even if you have to wait, I know it will be worth it. Please hang in there and know that we are all pulling for you. As Bubba says - We will win!

[linnysue]

Oh, Karen, I'm so sorry you're having a tough day. This disease is very exhausting and frustrating to say the least, and I can totally relate to how you feel. Yes, hang in there. I know there are better days ahead. Before you know it, you'll have your appointment and be on your way towards getting your life back.

Here's a cyber (((HUG))) from me to you. Will be keeping you in my prayers.

[Franky]

Karen we are all sorry to hear how you feel! You have to hang in there. Think of all the positive things in your life. Deep depression is a major factor in this disease and keeping positive is part of the long road of recovery. It can be done even without the help of the DR. Never the less that's a positive thing, your impending talk with the Dr.

[Brenda]

i know how you feel. (except for the buying new clothes every 2 months ???)

[maryok]

K (redibooks) -- dont know if this is going to make any sense to you/make you feel better but here goes ... you have worked SO hard for SO long to deal with this -- and always, always, always have made yourself look at the bright side, keep smiling, not complain, always saying "well, I don't have a right to complain, really, others have it worse than me" etc. In all the months I've known you, all the phone calls and emails we've had, I don't remember you ever giving yourself permission to be mad, sad, scared, frustrated, fed up and ANGRY AS ALL HELL!

This disease SUCKS BIG TIME -- and you have EVERY RIGHT to feel the way you're feeling now -- without a disclaimer, without feeling like you have to be thankful for other stuff in your life, without feeling like you have to be strong and keep a stiff upper lip. And you have every right to let go and lean on me and others here, just as you've done for us. You WILL get over this hell called Morgellons, we're ALL going to beat this thing -- and we'll do it together. Pls. know I'm always here for you -- and if I ever hear you say "I don't have a right to complain" again, I'll clobber you -- deal? cussing

[redibooks]

What a great bunch of people here on this site, thanks for the support. I don't prefer to be on a pity party, but I think my good friend Mary is right and I have to allow those feelings to be, like them or not.

tomorrow will be a new day. thanks

k

[ladycolorado]

redibooks, i can relate to your feelings all too well. well, good glad you have booked with a good doctor. i can tell you after less then a week i have peace now with treatment. the chronic fatigue joint pain , and many of my symptoms are mostly gone. i have been sloughing off layers of "junk" for days. my immune system is coming back up, and although i must do antibiotics via iv, a small price to pay for peace. the wound on my hand is healing up nicely from a fall before got treatment. i do know if the therapy will be for a year plus. who knows, i may need medicine for the rest of my life, like a diabetic does. but to have the brain fog gone, and the joint pain gone is well worth it. outpatient yes i sounded like a whiner about things in here in the past. yes it hurts SO very bad, and we are all just humans, but it is healthy and acceptable to vent. yeah i was scared in my case at first, but for me the outpatient procedure wasn't' t that bad to get the groshon catheter put in(was just outpatient and tiny thing done. i am healing so much faster, with so much less pain i realize i chose the right thing. but this is just my individual treatment. some may just like to do oral antibiotics and such. unfortunately one size does not fit all with treatment. hang in there i know it is so hard, we all really care. i know with your choice for a dr. to help you you shall be so much better. the wait seems long, but there is a light at the end of the tunnel. i wish we could just take one magic pill or shot and have it all gone. but it just isn't that easy. things will get better, i have been ill since last september and the wait was long for me too. yes, at times had moments of weakness and wanted to give up. somehow i have made it, so glad, we have to try to stay strong for the others who need help, if we can. i hope you are okay, and wanted to let you know i understand, and to let you know things will improve for you. well wanted to add that although chronic fatigue gone(still has taken its toll on me), when my doctor gives okay i am considering something now going to heal better get stronger with iv meds and stuff to give me an extra natural oomf. i am going to see if can get a b-12 shot once a month. i will let you guys know what is said when the time comes and i ask. i had one once and they are great. (LC)

[standswfist]

Now this is cool! You got support and people who can actually say to you, Redibrooks. Yeah, it really does push you to your ultimate limit, doesn't it!!? And truly feel what you feel. And not being in that stage at the same time of eachother cycle is a positive in itself.

Could imagine if we all had the symptoms of the cycle at the same time?? We would have found a way to shoot each other through the internet, in our broken misery. This stuff right here is the positive and priceless.

What Franky said about the immune system. I found it was my despair and depression that brought on symptoms the worse. I just could never understand how I could change so easily and quickly from feeling like I'm getting the upper hand of this thing, to crashing and burning and ready to throw in the towel, in a matter of 1 day. Shoot. Less than that, even. Hours!

Major immune system malfunction...I could puke on demand. If my body demanded a major immune system boost, I would drink as much water as I possibly could and then some. Lemon juice balances ph and is good. Adding this helps lots, too. Extra extra sleep big time immune booster, and then i also drank and still do, Boost High Protein drinks. My kids, too.

Those ultimate low days are so difficult. I'm in the group that the husband believed in the doctor, more than his own wife, regardless of the fact they would mock me and even named one of the patient rooms after my last name. Not because of visits for myself but for my children. Blood in urine, ruptured ears and millions of other things. My 2 boys were green zombies and often screamed, "Why does this have to happen to us, why can't we be normal like everyone else?" in front of my husband and he could never see through any of it. One day, I blew my fuse and decided not to cover up the road rage I had from head to toe. I dealt w/ a heavy image "thing" and up till that point, I had lived by it.
But every wall had to come down and this was the one I struggled most with.

Not sure why I tend to tell bits and pieces of my life story, on so many posts. Maybe it's the 6/7 years I had to swallow it alone, finally purging out cuz these last days/week or so, it sure has felt that way.
We should do a venting thread if there already isn't one? I am gonna have to look. Shoot. Put it in the treatment section...good morgellon therapy. On that vent subject, i have to get this one out:
I was having a very crappy day much like your day, yesterday. I had learned if I was in this phase, I never got interrupted when I shut that bathroom door. They didn't dare. It became my breakdown room. Sometimes I would wake up to my husband standing over me because I had cried myself to sleep. It was a day like this. My husband came in and said, "I am tired of this, it is making me miserable". My very first thought was if I could only pull out a magic "POOF" wand. I'd zap him my plague and say, "Here Babe!~Please demonstrate how I might be able to make this a little less miserable for you". GRRRRRRR!!!! Of course, after I performed the bobit act!

Just a vent here, sorry. Redibrooks, I have this video that helped me alot. If I could define those days by video, I think this one would be my top pick. No matter how bad it got or how dark my tunnel seemed, this always got at least a crack of a smile. It's so stupid, it still makes me laugh. I will fetch it and post it. Hopefully I can. Been having issues in my Picasa site.
Standswfist

[standswfist]

http://picasaweb.google.com/standswf...10142982962882