Dysautonomia Sucks!!

Dysautonomia Sucks!!
This is a picture that I created just to show how I feel about my disease(s).

Tuesday, November 15, 2011

Waiting Forever....................

When you're sick its a daily fight. Its never easy but its the people who are there to support you that keep you pushing on. Without those people in my life I would have never made it this far. I've lost friends but I've gained new and even greater friends in their place. These people are amazing, loving, caring and supportive and are always there when I need someone to lift my spirits again. I'm very thankful for these people. They've become more like family now.

But another thing that you deal with when youre sick is the judgement, criticism, hate, medical bills, doctors appointments, tests, questions, etc. The list could go on forever. You feel as though you're alone in it and that its never going to get better. Then when you start fighting for disability then its a constant fight and it takes so much out of you. Between the paper work, denial letters, appeals, lawyers meetings, etc it just builds up, takes strength and adds more weight on your shoulders.

I've been fighting for disability since 2007 and have been denied over and over again because my diagnosis is not "taught in medical school". There are so many things out there that arent taught in medical school. There are people who I know personally who gets disability for a 2 yr old child with asthma that hardly has any problems. Its crazy how the system works these days. People get disability and work a full time job, etc but nothing can be said about that but when you say something about the person who is turned down for every job they apply for because they have health problems and arent "reliable". Whats reliable exactly?? Being there every day, not taking a day off for a needed doctors appt, not taking your meds on time even while on shift, etc. The person who is turned down for every job is also turned down for disability because they havent worked enough.


So I'm going to leave this post with this answer, maybe someone can explain it. Hopefully it will be some of the disability workers who I have this emailed to everytime I post on here. So please explain!

How can you work enough to get credits for disability when your health keeps you from working???


(P.S. On a good note, I finally recieved a court date for my disability hearing this morning. Prayers are def needed between now and Jan 5th)

Monday, February 7, 2011

Why worry right???

I know its been awhile since I've posted. Things have been crazy. I am going to try to take time every day or at least every week to post. I appreciate all my followers and knowing people care. 

So the latest thing on my mind is Feb. 10, 2011. If you're wondering whats Feb 10, 2011 about, well let me tell you. 

In 2007 I noticed a small knot in my left side. It was tender but not too bad. As the days and weeks passed, I noticed that it started getting bigger. I went to a surgeon to have it removed and he removed one that I did not even know was there. I got a major infection in it and it took a long time to close up. 

Afterwards, I started to notice more knots. Now they were coming up in my leg, my sides, stomach, neck, my arm, and even inside my mouth. I was stressing.  The one in my arm started to get very large and ended up becoming attached to the nerve so it was causing problems. I went to a different surgeon at a different hospital and had that one removed. Come to find out there were four knots attached to the nerve but the doctor only removed one. I got yet another infection and now have a horrible looking scar. 

So now its time to go back under the knife. Feb 10, 2011 is my next surgery date (which is this Thursday). They are going in to remove the knot in my left side that my first surgeon failed to remove. Its now gotten so big that its pushing my ribs out and causing a lot of pain. Its caused me to have problems sleeping as well.

Now, the reason behind the subject oh this blog is the fact that I'm so freaking worried about this surgery that I cant sleep, I'm having horrible nightmares that I'm going to die on the operating table, etc. I cant think of anything other then that. 

Everyone keeps saying "Don't worry, you'll be fine". Well for some reason I just can't make myself believe that. The anxiety of it is getting worse the closer it gets to the date. I want this gone but I am totally terrified. 

I know that I have had surgeries before and came out fine but there is just something about this one that just doesn't sit right with me. I've never had this kind of fear before. I don't understand it. I've tried to keep my mind off of it but I can't. 

I have also started dating this great guy but in the back of my mind I have that question of "when's he going to walk away" just lingering there. We can be having a good time and then out of no where its like a strange voice repeats that question over and over again and thats all I can think about. 

He knows about my health and knows that I'm no where near perfect but he has said and acts like he understands and is okay with it but for some reason I just can't bring myself to believe it. I guess its just because I have had to deal with getting close to someone and them finding out about my health and then running away. 

I want a guy who isn't going to treat me any differently. I don't want to constantly be reminded of it. I want to be able to go out and not think about it. I don't want someone who's going to constantly ask if I'm okay or anything. I'm the type of girl who tries to keep stuff hidden. I don't want everyone to know due to people acting like I'm going to drop dead at any minute. 

That's one reason why I like this guy so much. Because he hasn't acted that way but for some reason I'm still waiting for it. I want to mention it but I don't know how. I'm scared of him getting mad. I'm happy with him and am hoping this works but I'm still questioning everything in the back of my mind also. Its crazy. 

So my problem at the moment is that I can't stop worrying no matter what I do. That worry is always in the back of my mind. So I guess at the moment I'm just going to have to deal with it and try my best to quit thinking about so much and just live for the moment. I'm going to leave it to God as to what happens. 

So on an ending note, I am hoping that I can find time to post at least once a week, hopefully more. I hope all is well with everyone. Much love! 

Thursday, January 6, 2011

The End Of A Year & The Beginning Of A New Life!

Its been awhile. Things have been so crazy that when I decide to post something then something else happens and I forget. The loveliness of brain fog. lol


 Anyway, 2010 was full of a lot of happiness and sadness, smiles and tears, heartaches and heartbreaks but it was also a new lesson learned. During the year of 2010 I remained single and lived my life for me. I love the single life and having my space and freedom but now I'm thinking about getting back into the dating scene. Who knows at the moment. I'm still dealing with a broken heart though. I fell in love with someone in 2007 and even though it didn't work out then, I've never stopped loving him. We lost contact after my ex-fiance started problems for us in 2009 but after we split up then me and "J" (we'll just call him "J") started running into each other and then finally started talking again. It seemed like nothing had changed. Honestly I wish it never had changed but there's nothing that we can do about that. Unfortunately every time one of us would be single then the other one wouldn't be. Then we both became single and just when I thought we'd get that chance again then he told me that he was moving to Texas in less then a week. He's gone now and we have only talked twice. Its so hard knowing that he's so far away but then again he's making a better life for himself. Maybe if whenever he comes back then we can give it a shot but who knows. Maybe its destiny that we aren't together but remain friends. I think about him daily. Everything reminds me of him. I just wonder if he thinks about me...........

On another note, in 2010 my health took a turn for the worse. I had finally started to learn to live with my diagnosis of Dysautonomia and Riley Day Syndrome but then I get so much more added to that and I have to somehow learn to live with that also. I went to the doctor one time and was told that on top of everything else I had Mitral Valve Prolapse, Anxiety, and Chronic Panic Attacks. Wow I wonder why I have anxiety. I started dealing with that and that wasn't so bad because I couldn't really tell (other then the panic attacks every night) that anything else was wrong but then there was the test that showed that I have a heart arythmia. Woohoo another thing to deal with. Time went by and I was dealing with that and was thinking, okay nothing else can go on. I cant possibly have more problems then this. Well turns out I was wrong....again. I was then diagnosed with Raynauds Disease and respiratory problems. So far that's all my diagnosis. I'm scared to ask whats next. All those extra problems came in 2010 so needless to say, 2010 wasn't my favorite year.

I lost a lot of friends and family members in 2010 but I also gained a lot of them too. Facebook brought me closer to family I never knew and introduced me to other people who were dealing with the same if not more problems. It has showed me that I'm not alone in any of this and that even though some people are very mean and cant seem to handle being friends with someone who has health problems there are still so many people out there who are willing to listen and lend a shoulder to lean on or pray for you in time of need. The people on facebook have brought me through a lot of stuff in 2010 that I would have had an even harder time. To the people who might read this that thinks that true honest friendships cant be formed via the internet......you're wrong and to those who think that friends cant become family......you're very wrong. Most the people on my page that I have met are like family. Some of them are more like family then my own blood family is. I'd give anything for them no matter what it cost me. If I could take the pain away from all of them forever, even if it meant a life time of hurt and sorrow for me then I would. (To my facebook friends and family....I love you guys).

Most people make New Years resolutions to lose weight or find true love or whatever. Well that would be nice but what I want most in life (preferably 2011) is to find a cure for not only Dysautonomia but for all diseases. I also want to bring more awareness to diseases like Dysautonomia that no one (especially) doctors understand. I want to be more help to those in need and offer advice and solutions to other peoples problems. I want to help people treat people better instead of judge people and treat them badly. If that would happen then the world would be a greater place. People need to understand that no one is perfect but at least we try. I hate seeing people hurt whether physically or emotionally. I want to be able to say that I've helped people out like others have helped me.

So with all that said, I want to wish everyone a great and healthy 2011. Always remember to tell people you love them and treat everyone with the respect that you would want. God Bless Always.

Much Love and Prayers,
Kayla