Always Looking for Help

As I previously wrote, I went to see Dr. Joseph Jemsek in D.C. for the first time since being diagnosed.  It was literally the first time I felt confident leaving a doctors office. I felt understood, cared about, and had hope.

I left with the task of getting my anxiety and sleep “under control” which meant trying Lyrica, Lamictal, and Mirtazapine. Well I told ya’ll about the two evil L’s and the Mirt is still under consideration. So far half a tab gave me restless-arms syndrome. Just my arms, no where else. So weird and frustrating.

During my horrible bout with side effects, Dr. J. was unavailable. I was screaming like a demon from hell telling my parents to take me to the hospital before I could recede back into the fires of hell forever and we couldn’t get anyone on the phone.

It’s been about a week and so far all I’ve got is that a higher dose of Mirt may cancel out the effects….. I mean i’m going to try it but still. That’s it?
They won’t treat me until everythings under control..

Thank god for the psychiatrist kind enough to medicate me over the phone.

Now, there’s this place called Envita in Arizona. It’s a clinic for lyme patients and also cancer too, still out patient but a place for us to heal none the less. To be honest I didn’t know places like this existed until my parents mentioned it.. but it’s secretly all I’ve ever wanted.

Both of my parents have been working tirelessly for weeks; talking to patients and their parents, watching videos, researching, literally everything they can to justify taking me midway across the country..

This is a 6 hour plane flight for someone who is completely terrified and refuses to understand planes aka ME, AND I’d be going with just my mom since my dad has to stay, work and take care of my 3 cats and our 2 dogs.
The plane part is REALLY hard but i’m also worried my mom and I will be stressed out and fight and cry and hate each other.. I mean hell, she may be strong enough to handle it but can I?  With my anxiety i’m not the best person when i’m away from home and my normal creature comforts.. I can literally put the rage in lyme rage if you know what i mean.

All laid out though.. it does seem to make sense to travel far away, live, and receive close attention than it does to try to do most of the stuff on your own.. and yes I also know all about Dr. Jemseks history..

If anyone has any comments either way, negative or positive, please leave them. I have no idea what to do.

Lyrica and Lamictal

Unfortunately I started these at the same time so it’s unsure which exactly helped and hurt in which area, all I know is that I went crazy.

I know about Lyme rage, as I have Bartonellosis too, but I have never experienced it like I did after taking these medications.

I started right after my gall-bladder surgery. I was already in my parents room since they have an ensuite, leaving my cats in my “apartment” room and it took me about 2 weeks to recover from the pain but then something else happened.

I became very nervous about being around my cats and taking care of them, so I set up camp in the guest room until I was completely healed.. until I started to realize that leaving the room was becoming harder and harder.

I can’t tell where the guilt comes from anymore.

I lost my mind. I didn’t leave my room except to pee while my parents slept.. I screamed like a freaking demon and cried more than I have ever cried. I literally wanted to rip my heart out of my chest..

I honestly don’t know how long it lasted.. I was given “super” valium by a psychiatrist  who hasn’t even seen me because I couldn’t go to my appointment, which is amazing as it is. Which worked great the first two days then of course lost it’s momentum.. but I also think a week passed that I missed because I totally thought thanksgiving was next week..

Dr. Jemsek has honestly let me down.. No one was available to help me, and without the proper help for my anxiety and sleep, he won’t treat me.
I’m much more worried about having a doctor 3 states away than I used to be.

The point is that my critique of these drugs are a thumb down. They did nothing good for me except I was sleeping slightly better when taking it.
But I do believe that everyone is different and that different things work for different people. Also even though I don’t know exactly which drug did what, Lyrica is the main suspect and honestly I would avoid this drug if possible. The side effects are NOT worth it.

 

Update

So far, I am TERRIBLE at this blog thing..

I tend to go ghost when things get too hard..

To be fair, I am just getting over a horrible fight with Lyrica which will get it’s own post, I had gall bladder surgery, I got dumped again, discovered another possible route of treatment, and who can remember what else..

This isnt really a positive post but I am including updates in my blog in order to keep me sane and so people can keep up with me.

I’ve felt really lost and alone lately. Even though my family is amazing, they send me cards, presents and text me when they can.. and it makes me so happy.. They’re just so far away and it’s that crazy feeling of feeling alone surrounded by people. I mean I live with my parents.. i’m hardly ever really alone.. Sometimes it’s just really hard to fight those feelings.

I’m trying to have faith, i’m trying to hold on, i’m trying to be positive.. i’m trying to do so many things I can hardly do anything.

Today though, today was different. It is 8pm and I have not cried once.

 

 

Being Wheelchair Bound

I woke up one morning and my knees stopped working. I can’t walk without holding on to something and my knees bounce and jerk like I’m trying to dance walk. Trust me I’m not. I mean COME ON! I was already sick did I really need this added to the list??

As you may have guessed this makes it hard to get around and increases my pain immensely! So I had to make a choice, get a wheelchair or never leave the bed. (Now don’t get me wrong, I am still mostly bed-bound)

Leaving the house is already close to impossible dealing with all the symptoms that I have too.. but now my invisible illness had become visible.

This was a scary thing to deal with, but I chose to keep living as much as possible. I don’t always have the best attitude but I absolutely go crazy if I can’t leave the house for days.

It’s also really weird to use a wheelchair when you can still walk a little bit. You find yourself wondering what people think when you move your legs, when you stand up to reach something on a shelf at the grocery store..

But after some time you start to forget about that. Its hard but eventually you realize that they have no idea what you go through every day. You fight more than they realize and hell, they may be fighting too!

If you  need to use a wheelchair or a walker in order to leave the house, do it. Don’t think twice, just do it.

Now my parent’s take me on “rides”, I can go to the park, and I don’t have to worry about there being a wheelchair or cart to rent/borrow where ever I go!

Happy Rolling!