It's about time to stop pretending I'm not sick.

I should be taken up a career as an actress hahahaha!! The past few weeks are turning into months without treatment. I've been having fun and enjoying my days without swallowing handfuls of pills to the fullest!

I'm still very sick. On a daily basis due to my new other disease, MCAD, I feel like I'm suffocating and on the brink of death a couple times a day. Somehow as soon as it passes I'm back to running, yes, running around like a crazy person with my son and shoveling dirt into my garden beds. I don't know how I recover and act like nothing even happened. It's an act. I put on a really good show. I've been faking it til I make it. But it's not working out for me anymore. It's time to drop the act as much as I enjoy the fallacy of perfect health.

Ignorance is bliss. I told a friend in an email that today and it's very fitting. But. But but but but... I feel the infections creeping back in. I feel my body being taken over gradually. It's pulling at me and becoming too hard to ignore.

I still haven't made up my mind about what to do. I'm so terrified to make decisions that I just freeze. I don't want to go back to being bed bound. I shouldn't have to! There has to be another way! Now that I know myou body has mast cells that are complete drama queens, I don't feel comfortable trying new medicines. Knowing even simply getting too hot or cold has the potential to throw me into anaphylaxis at the drop of a hat, those harsh medicines are a complete turn off.

On the flip side I've been living with this for as long as I've had lyme. May even even longer. Who knows what came first, the chicken Or the egg theory fits this scenario. I've survived up until this point and that's the good news. The bad news is somehow once I started treatment for my infections I became highly reactive.

I'm rambling. Reading.back through this it hardly makes sense. oh Well. I just like to come here and complain about the things that confuse me. I don't know what my next move should be. My llnd says let's treat babesia. If it doesn't work then let's try a picc line. Maybe parasites.. ugh. I'm in no shape for a picc line! If I can't handle oral then my body would probably freak out with strong stuff like rocephin. Or does it even work like that?

Am I so sick while on treatment from herxing? Is it the MCAD reacting to the meds? Is it the infections going ballistic desperate to survive? Do I possibly have something else entirely going on? Is it really MCAD? is it really lyme and company? Why am I having such a different experience than most? WHY CANT THE DOCTORS FIGURE ME OUT???!!!!

I'm sick of guessing. I'm sick of trying new meds that don't work and wasting time. I'm sick of missing out on my life and my family. I'm sick of having to sacrifice my time and resources. Im sick of spending money on doctors and medicines instead of using it to give my son life experiences and make memories. I'm sick of being sick! Too many questions and not enough answers! I feel like I'm getting buried faster than I can dig my out. I know I am. That's a fact.

OH well.. I'll just keep getting through days. I'll keep smiling and playing with my son because that makes me happy and dealing with this doesn't. I'll hope against hope that something eventually turns around. When the answers I need get here they get here. I can't think my way out of this. It is what it is.

Right now it seems that I have no control and I'm just along for the ride.. maybe that's true and may even it isnt. I'm too sick to figure it out. I'll go eat some more watermelon instead. Maybe I've finally really lost it! Hahahaha!! How else could anyone possibly find reasons to keep their smile under these circumstances? I'm just a loon!

Thanks :)

I've been in such a weird mood. At this point I'm feeling a bit irresponsible for not doing more about my health. I don't want to go back to being as sick as I was..

The only thing getting me through the days is my family. I so get what you mean about wanting to fight for them. The truth is in a way I have given up the last couple weeks. I guess I just needed a break, but I can't shake the guilt anymore.

My brain must be swollen still.because I'm just not myself. At all. It's scary. At this point I feel too lost to make good decisions, or any decisions at all. Ugh..... I don't know how things got so bad..

IHL, you are one strong woman! You've shown that many times. I'm glad you were able to get on here and vent. It's important to talk about it and lessen your load a little. When do you see your doctor again?

Keep hanging in there and take it easy. It's going to get hot in a few days, so try not to do too much then.

(((((HUGS)))))

This is only who you are right this moment - it will change as you heal, believe me!! You will not forever feel vulnerable and weak, no matter how you feel about it now.

You ARE a strong and vibrant woman - what you are dealing with would make the strongest question all kinds of things. It's scary to have it thrust upon us just how easily we can be "taken down" by something unseen. But know and believe in the ability for the body to fight back, given the right tools.

You have to get in to see that one Doc to either rule in or rule out MCAD issues, then go from there.

You can do this - I know you can.

Yes, me too!!

I just bought a kayak (oops), although I think I could use it on good days.

Buddhism taught me acceptance, although I haven't been putting it into action very often. Another oops.

Lyme ADHD doesn't help at all!! I have impulse control problems, and I tend to hyper focus. Then I get super tired.

I don't take naps when I should. I don't go to bed when I should either.

I'm starting to wonder if I should also accept that I might not get better.

Last Christmas, I had a good day, and I planted my living Christmas tree. It's doing great and putting out new growth, and I love it almost like you would love a pet. So I gave it/her (ha ha) a name, and I called her "Hope."

But hope can be foolish (unless you're depressed/suicidal) because it doesn't help you live in the moment.

I keep thinking, "I'll get better, I'll get better," ad infinitum. Some of my friends are tired of hearing it.

Margaret

IHL - I'm so glad to hear that you found a Dr. that specializes in both MCAD and Lyme! AND, you're able to see him by the end of June!
I think that is such positive news.

So far, I think you are handling it all very well!


I only have one child...and it really is okay.


Edited to say - had one child...he's 22 now...lol

Yes I know. The train leaves the station with your friends/family, and you're stuck there saying bye.

That's really interesting, that whole thing about yearning for the future, or even missing the future. Kind of poetic.

Margaret