Struggling

I know I haven't posted in a very long time. A lot has happened. I went to Alabama to a dysautonomia doc for testing and after 3 years I have finally been validated. Its official. I have Dysautonomia, POTS (postural orthostatic tachycardia syndrome) and one other thing I didn't know, apparently the last jerk cardiologist missed on their echo, Mitral Valve Prolapse. Throw all that in with the hypermobile joint syndrome (which is probably Ehler Danos Syndrome) and it all equals, a big giant mess. Of course I did not get to see the doctor I drove 3 hours, and took 2 planes each way to see. She left a half hour before I got to her to pick up a sick kid. I was given 3 meds plus the 2 I was prescribed by my jerk doc here in town before I left. So that makes a grand total of 6 meds. I am having trouble with the first one. Its making me have extreme feelings of anger, extreme irritability and even rage. I have not yet taken the other 2. The second is in a family of drugs I have taken before and I HATED the way it made me feel. Like a zombie. So I'm scared to take it. The 3rd is guess what? ANOTHER FRIGGIN BETA BLOCKER!!!!! Yet another doc did not take me seriously when I told her my side effects are horrific from every single one I have taken!!!! She said it was weird that I have those yet when I look up the side effects of the drugs, there they all are under the side effects, that you are to call the doc immediately if you have!!!!

I am so discouraged that I am beside myself. These are the meds that are supposed to help me...and I cant put them in my mouth...I just cant do it. Because when you are barely functioning with what you have and you know the drugs are going to make you worse, I just cant put them in my mouth. I CANT DO IT. And now I have to call the doc in Alabama and tell them to change every single one of the meds and they are gonna hate me. I keep wondering if it had been the right doc if she would have listened better. This one was rushed and somewhat patronizing. It was just my luck not to see her. I know she is better because Kayla (my friend that helped me out in bama who also sees Dr Moore) was asking if she went over this and that and did she talk to me about that? And I was like, no no no. She really didn't say much...and at the moment I was just so overwhelmed by her saying I have a classic case of dysautonomia, that a lot of stuff just slid over me. I did protest the beta blockers and for awhile she was talking calicum channel blockers, but somehow I ended back up on the betas. I don't know what to do. I know my body. I know how I will respond to these drugs. Do I refuse them and risk being labeled non compliant? Or take them and let them make me feel like death even more just to prove to them...if they would even believe me.

So I am overwhelmed. I have lost the hope that was on the horizon of the diagnosis. It just all went to crap. I knew it wouldn't be easy. But to be given 3 meds that I know feel like poison to me, is just my luck. I am lost. I don't want to do this anymore. I feel like I am not even capable of having coping mechanisms, because the disease and now the meds are stripping away the sane me and giving me this irritable, raging me that makes me hate the world and makes me yearn to punch something, anything to get relief from it.

So fun. And that's just the emotional side of it. The physical side has not changed. Migraines, dizziness, fatigue,nausea, flushing, burning and stabbing feet, the constant pain. (yeah I found out my right arm is so loose in the socket, it partially dislocates everytime I use it, and my jerk doc took the pain pills I could tolerate away, cuz he thinks they will react with the migraine med, even though the pharmicist researched it and said the risk is so tiny, he wouldnt worry about it. He gave me vicodin instead. So now Im on opiates and benzodiazepines, hello druggie zombie).

But I must stuff it all down. Pretend normalcy. Try not to bite my families heads off. The other nite I told hubby (who kept talking thru a show I was watching, making fun of it) that I couldn't hear the TV. When he asked if I wanted him to turn it up, I told him "no I want you to just shut up so I can hear it!!!!) What I really wanted to say was for him to just get the heck outta of the room. NICE. Thank you Klonopin. We barely see each other and now I'm a seething bucket of rage. Awesome.

My life goes by in a blur. I never even know what day it is. Its just a minute to minute struggle to function. I am spread thin by trying to practically single parent my 2 boys. Juggling their busy schedules and not forget anyone. Trying to deal with the financial stress of paying bills and ignoring collectors million calls because they want more money then i am able to send. trying to keep the house from being a giant stinking cesspool. Keeping up the car and buying a new battery after getting stranded in a dead car. You know, LIFE. But life spreads me so thin, that its just a smear of things for me. Always out of focus. I feel like I'm spread so thin, I am forever forgetting something, disappointing someone, letting someone down, messing up. But I have to do it. Put a smile on, for my boys, for the world. Act like I'm OK. Like I'm doing it. Handling it. Stuff it down, stuff it down. No time for crying,raging.

And now that word has spread that I got diagnosed, the "are you feeling better yet" questions have started. I hate to say "nope and now I feel like punching you for asking me because this new med is giving me rage issues" cuz that just wouldn't be very nice now would it? I think not.

I am also supposed to be starting the disability process. I cant seem to find the energy to do it. I have been given so little hope of getting it, i just cant seem to start a process that I know will likely take so much energy and yet again, like everything else, yield only frustration and failure.

I'M SO LOST. Please world just let me curl up in bed and forget about everything. I don't want to play life anymore.

Some of you may be wondering where my faith is in all this. It is there. I still believe. I just am having such a hard time connecting to my Father. I feel my prayers bounce off the ceiling. I know its me. He is always there waiting for me, but something in my heart is keeping me from Him. Anger? Bitterness? Maybe. I try to read the Word but cant make this fuzzy brain focus. My heart aches from it, this loss of connection, but try as I might, i just cant find it. SO again I am adrift...lost.

All of this turmoil is going on inside,but if you see me out, I will smile and chat and try to appear normal. And I look so good you know! If they could just open a little door to my soul, what would come out would knock them to the floor, or have them running away screaming, because it really, really doesn't look good on the inside. Not even a little.

So to those that are wondering how I'm coping with my diagnosis, there it is. I'm not. At all. It sucks. My hubby was a wee bit confused when I called him sobbing from the hotel room after I got the diagnosis. He said "well you knew that's what you had". Ya, I know. But to hear it out loud, once the initial joy and relief of being validated fades, reality sets in. Maybe I was wishing they would miraculously find it to be something else, something easily curable. One little pill would fix me right up. But no, I have a crappy, complicated, incurable illness. No I'm not gonna die tomorrow from it, but I will feel like I'm dying a little everyday. The suffering will just go on and on and on and on forever. Yay. A friend of mine was diagnosed with breast cancer a few months ago. They caught it early, thank God, and she chose radiation. I saw her a few days ago and asked how she was doing. She told me today was her last treatment. That's is. She is done. Cured. Now I know, I know...it can come back and all that. I know. But there was a part of me that was jealous. She was done. She can recover now from the side effects of the radiation. She will feel better now. I was overjoyed for her, yet jealous. Jealous of someone diagnosed with breast cancer. Awesome. Makes me feel so wonderful about myself. I have been told by other dysautonomics they totally have felt that so I guess I'm not alone in my awesomeness.

So that's it in all its ugliness. This is who I am right now. But aren't I looking so good?