Who knew the miracle worker here...could be me?

This week has been a very weird week. It started earlier in the week when I glanced over to my dresser and noticed probably 10 or 15 pill bottles. Just tons and tons of pills, most for pain, some for depression, anxiety, muscles spasms, inflammation, vitamins, etc. And then I thought about everything that the dr.s have been saying lately and then I thought...that's it...I'm done. I am not going to do this anymore.

Now this part may seem quite controversial to some of you, but this blog is about brutal honesty so here I go. I took inventory of my meds and then immediately stopped taking them. I thought, no all of these meds can't be good. All of the side effects, the long term effects, addiction prospects, no. I will not live this way anymore. So from monday night until I think it was wednesday I made it without a pain pill. But the weird thing was except for pain I felt pretty decent. I had some nausea which caused some vomiting. But hardly any bone pain, joint pain, muscle aches. Just nerves...lots and lots of zapping. Then on Friday a thunderstorm hit. And all of a sudden the pain was so overwhelming and the electricity of nerve pain in my body was so overwhelming all I could do was ball and ball and ball. My mom talked me through the worst of it and just kept comforting me and telling me to stay strong, it's best not to be on all the meds. She kept telling me she was so proud of me and I didn't understand. But she explained that I was taking over my destiny, my body, my health. All of a sudden I was pretty proud too.
Then this morning (Saturday) came, I finally slept last night after 2 nights of no sleep at all. But I woke up with an overwhelming zapping feeling through my arms, hands, face, and mouth. I tried to stay strong most of the morning. But eventually I called the dr. I didn't want to because I knew they wouldn't support my going cold turkey off the meds. They explained about withdrawl symptoms and they thought that was what was going on.
So here's the thing with how I was feeling this morning. Not a lot of pain, no nausea, alert, just zapping. The dr. convinced me to take a dose of my cymbalta to start weaning off the appropriate way. So I sadly agreed, but I was scared of what would happen if I didn't.
Within about an hour the zapping stopped, but....with that, the feeling of "RSD" rushed over my body. The pain, the nausea, the hot/cold flashes, the color changes, sensitivity of touch, etc.
I decided to call a pharmacist and talked to her about reactions to cymbalta vs. symptoms of RSD. And she said it's the same.
I am trying so hard not to get my hopes up, but I am praying that this may be the answer to my prayers. Could this be a drug reaction?

All I know is that I am almost on the path to find out. The pain center is sending me to Mayo for a complete investigation. I am nervous and excited all in the same. Dr. Hess is writing a letter for me to go down there, thank God!!!

Dancing on tip-toes

Well so far this week has been so-so. My meds were just upped, so usually that means that my pain levels on average are reduced for a couple of weeks. Today though I am trapped in bed by spasms, exhaustion, and weakness. My eyeballs feel like they have weights on them. I am sure I am feeling crummy all of the time due to stress. The good ole' stress monster that attempts to rule and screw up my life. Yet again personal relationships aren't perfect. Which is so hard because I have a hard time giving the people in my life a whole lot of compassion, and whats ironic, is that that is one thing that I want from my family and friends. I am having difficulty understanding why people have such huge expectations for me. It takes so much of me just to function with my high pain levels and my constant nausea. There are so many side effects to my illness and my meds so even though the pain is so excruciating, it is just the tip of the iceberg when it comes to my daily stresses. My body feels like it's been literally beaten up daily, hourly, even some days by the minute. I struggle just to maintain a smile, to laugh, to see things optimistically, to have even one positive mantra. So when others expect me to do more, the extra mile, I get so frustrated. Alot of my illness can be controlled (good or bad) by stress levels. I know that I am not by any means perfect and neither is Chintan or my kids, but right now we are by far not living, we are just surviving. Our house isn't immaculate, the kids don't always look perfect, I rarely wear makeup or get in the shower (I know that it's gross but this blog is about my reality and showering is extremely painful, so I sponge bathe a lot.) Most of the things in our life are put on the back burner, because priorities are re-adjusted not because of what's important in that week or month but because of what's important in that minute. We have very little help, it's mainly Chintan, me, my cousin and my mom. And I do understand that, people are very busy and just because I am terminally ill does not mean that people's lives have to stop, but because I need to be realistic about that others need to be realistic when it comes to expectations for us. I don't want nor do I expect others to tip-toe around me, but I can't do it for others. Life has become extremely honest and up-front for us, very "in your face". Trust me a lot of this I'd rather be in the dark with most of this stuff, but it just can't be. Patients, compassion, and understanding needs to be a must right now. We have a lot of big decisions to make right now, we need alot of things that just aren't possible, and we can't accomplish everything that is in front of us right now. I also do know that as adults there are certain things that we can't just ignore, we still have a responsibility to life that we just can't get out of. Just because I am ill, Chintan works 80+ hours a week, Lydia has autism doesn't mean we are excused from life's necessities. But is it easier to just put things on the back burner when we are overwhelmed, to just lay on the couch when things seem too crazy? Absolutely. I think in some ways that is human nature. Not to mention the fact that Chintan and I have always been laid back, chill type people. We are definitely not the "serious" type. And now that life has taken this unexpected turn, I think it's our defense mechanism just to stick or heads in the sand. Is it right? Is it the "adult thing to do? Is it responsible? Heck no! I am not proud of it, nor is Chintan. It causes a lot of tension in our relationship. But he is stressed to the max, exhausted, and feels pushed up against the wall and I am in constant excruciating pain that has taken everything away from me. So therefore we will make mistakes, we will do the wrong thing, we will be irresponsible. To be honest it's just hard enough to be good parents right now. And we both focus so much of our energy on parenting responsibilities that adult, marriage, friend, family responsibilities fall to the wayside. I know I don't feel good about it, but I am so tired and so overwhelmed that sometimes I just don't care. Now that I am terminal honestly I just want to be around people that offer something positive to my life. Whether it be a good joke, a funny story, a life lesson, or comforting shoulder. So bottom line of today's blog: I know we are not functioning at a high level, I don't want people to tip-toe around us, but I would appreciate some slack. And if we are driving you nuts because we aren't living life to your standards then just either keep it to yourself or cut ties. Because right now we are looking for support, love, friendship, compassion, and understanding. To all of you out there reading this we will continue to do things that piss you off, make you scratch your head, or disappoint you, but honestly none of it is intentional. I love everybody very much and appreciate all of the prayers and love out there and I would never intentionally hurt a soul. So search your heart for some compassion. Because I promise if roles were reversed or even if not and one of you needed a friend, I would be there. On both sturdy flat feet, with wide arms, and an open heart.
Love you all and thank you again!!
Chrissie

Life...uncensored...

For the first time in this blog I don't know what to say. I know I need a release, I've been encouraged to use this blog as my outlet. My world has definitely shifted, my reality has been realized, and my strength has been tested. For the last 2 weeks I have been so sick, the pain has been outrageous, to the point where I didn't know if I could go on. And all the while as my body is attacking me I am taking care of these two little miracles. I just love to look and observe Lydia, her autism intrigues me. I wonder what her world is like and I find major comfort that through all of this that world is a happy place. She is so bubbly and happy all the time. My little Lucy, now she is the exact opposite of Lydia. Obviously it's because of the autism, I get it! But she is so vocal...mama this....dada that.....I think it's great. She wants me all the time and cries constantly when I can't pick her up. Let me be honest, when my girls are happy and vocal, singing songs, cooing, or just shouting words...I want to run away and hide. Most of the time I have to plug my ears. It's like nails on a chalk board to me. What kind of a mother am I? When holding my children is torture, listening to them is annoying and looking at them is depressing. Don't get me wrong I love my babies, but this disease has robbed me of my entire life, all of my joy, and now it's attacking my spirit. The one thing I swore it couldn't have.
The dr.s are now talking about a fatal form of Lupus. They seem pretty sure that that is my new reality. I am trying not to think about it. I am not googling it like I did the RSD because I don't want to get to freaked out. But the drs. already keep mentioning my demise. I am not ready to hear that I could die. I just want to know that my babies are going to be okay. I want my dreams back. Chintan keeps mentioning that a year ago we had it made. He still worked a lot but I was the epitome of a stay at home mom. I loved it, we had a great time Lydia and I and then when my little Lucy was born...my heart must have grown to make room.
Well now we need to decide who will have partial custody after I die...what a decision. It's so hard. I wanted them to go to one of my besties Heather, but she bravely declined and I understood completely. I just want to scream in frustration, not because of this kids, but because why me? What did I ever do? Yeah I am not perfect, but seriously, 3 diseases at once, while having 2 small children, one of them being autistic. Yeah I am being selfish right now so I can get it out! Because all day everyday I think about the people who have it much worse. But I need to scream and get it out, but I can't it will scare the babies. So I'll scream here; What the Fuck????? Why????? You promised you'd never give more than one can handle...well I am broken!!! I am done!!!!!!! Do you hear me???????????? I am balling my eyes out right now and can barely type, but I know you can see me!!!! Where's the comfort??????????? I know the dr.s have to be honest, I know they have to be blunt, but where is the compassion? I am going to keep believing and trusting in you. You've never failed me before, every time I am in a rut you show me the way out. I've been low before but never this low. Please give me the peace of mind that if I go I won't be in pain anymore, I'll have comfort. Because right now even though they said it's a probability, I still see no way out of this pain. I suppose living with RSD, Fibro, and Lupus for the rest of my life, will be better than dying. Even though the pain is absolutely excruciating at least I am with my babies. So as mad as I am and as broken as I am, I choose life! I am sorry but you can't have me, I am not ready!!! My girls need me! No body will ever kiss and hug them as much as I do, nobody will ever admire and love them as much as me!

This is the most morbid freaking blog, and I am sorry. But I need an outlet. I promise I'll lighten it up soon. I am just very frustrated and angry. I do still have happy moments there are people that can give me a giggle. I do spend day after day in the positive, I just needed to vent.
Again, I am sorry. But I do hope this finds you all well.

Hugs and kisses, Chrissie