Dysautonomia Sucks!!

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

Friday, April 12, 2013

New battles ahead.......................

I know, I know......Its been FOREVER since I've posted on here. A lot has happened since the last time I posted. I'll give you all a quick run down of the past events.............

I started having seizures in December of 2011. January of 2012 I went to a neurologist and they found a cyst in the middle of my brain. Also said that I had been having epileptic and non-epileptic seizures. Weird huh? Thats what I thought. Anyway, I am happy to say that as of February 13, 2013 I was exactly 1 year seizure free. WoooHooo.

So, during that time, I had a disability hearing in front of the judge. My lawyer screwed me over so I was denied yet again. Go figure. I had to wait 18 months before refiling again because if I refile now, my previous lawyer will get 10% as well as any new lawyer I choose to use. Those 18 months are ALMOST over with.

In August I had surgery on my left ear after loosing my hearing in it. Found out my ear drum had been busted since 2009 but the Dr's had never mentioned it. Thankfully, I lucked out by finding an amazing ENT. Surgery went well, though it was painful. But about 2 weeks later I got a massive infected which resulted in the surgical site being reopened and left open for the multiple return trips to the DR to have it cleaned out. That SUCKED! During that time, me and the Dr got started talking about my history of severe infections no matter what gets infected. He decided to do blood work and found out that I have an autoimmune disease.

As of today, I've had three doctors say I have Lupus. All three have said my organs have been affected but to what extent, we don't know yet. I'm currently going to the Kirkland Clinic here in Birmingham, AL. This was my last resort of in state dr's for Lupus as the first three either could not or would not help. The first one wanted me on pain killers all the time, second one was terrified to even try to treat me, third one tried but thought I needed a "better and bigger group". So here I am, at the last hospital possible in the state of AL to try. So far, so good. This Dr. is rated 1st in AL and 3rd in America for Lupus and he has wrote MANY books about Lupus. He's amazing so far.

Dysautonomia still affects my life but right now my biggest battle is my Lupus. Between the long nights with no sleep, even longer days full of pain, crazy high fevers, etc, I feel as though I'm going to go crazy.

I ended up in the ER the other night with a fever of 107.5 and was called a liar and sent home. Shortest ER trip of my life. Though I was happy to only be there 45 minutes, I would have appreciated being treated better and with more respect.

Anyway, thats the latest going on here. I'm going to try to start posting more often on here again. If anyone is still reading this, then I'd appreciate you saying a prayer for myself and my family. I will do the same for you and yours. Also feel free to find me on facebook at www.facebook.com/blackenedheart91. I hope all is well with each of you readers.


"If there are no ups and downs in your life then that means you aren't alive"

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,

Saturday, November 20, 2010

Dealing with never knowing..............

I havent wrote on here in a very long time and I'm sorry for that but here I am........taking a shot at it again. Please stick with me as I do not have much time to do this.

As far as the title of this blog "Dealing with never knowing" is exactly what someone who is dealing with any kind of health problem deals with. We have good days and bad days and we never know which day is going to be a good or bad day.

For instance, I am currently on a 30 day heart rate monitor because one day out of nowhere, my heart rate got up almost to 300 and my blood pressure was WAY too high. No warning at all. I felt horrible. I called my Dysautonomia specialist and she said I was on the verge of cardiac arrest and that I needed to get to a hospital or doctors office asap. So instead of paying $300 for an ER visit then I went to my primary physician. She was going to do an EKG and fax the results to my Dys. dr so that she could try to figure out what was going on. Instead my primary doctor tries to tell me its my thyroid and refuses to do the requested EKG. Long story short, after three weeks of waiting test results to be faxed from another doctor and many many phone calls from me and my mom then I had to call the doctors boss. That got a phone call back. They decided to try blood work to see if its my thyroid and the test came back fine and I am still waiting for her to call back to tell me what she's going to do about my high blood pressure. Its been two weeks now......still no phone call.

My Dysautonomia doctor ordered me a 30 heart monitor to try to figure out whats going on with everything. Its a pain in my butt! I am so blistered and raw from these electrodes that I have no skin left. On top of that, I'm also breaking out from the cords to it........I decided to do some research and for some unknown reason the makers of the heart monitor decided to put latex in the cords and give to people who are allergic to latex. Go figure. But as long as this thing finds out whats going on then I'll live.

Back on the subject of the reason behind the title.........

I had not gotten sick (thrown up) in a long time. Well last weekend me and my family went out for the day and that night I got sick on the way home. I had a fever and threw up everything I ate or drink for a week. It was horrible.

Thats one of the lovely things that comes with dealing with a sickness. You can go to bed feeling perfectly fine and then wake up in the middle of the night getting sick. I felt good for alittle while and have only had minor symptoms but then I woke up this morning with bad chest pain and a heart rate of 313. Scared the crap out of me. My heart rate lowered but I've still had the chest pain. But what can I do???  I've just got to deal until the doctor finds out what is going on and how to treat it.

Its 3:23 in the morning now and my meds are kicking in. Its time to go to bed. But the meaning behind this blog title is that we never know whats going to happen from one day to another. Not even one minute to another. Never pass off your symptoms because what you think might be normal might actually be something horrible. So on that thought I'm off to bed. I'm sorry if this got off subject but its a mix between an update and advice. I will try to post tomorrow. Thank you and God Bless!

Wednesday, October 20, 2010

Just aggravates me........

             "Health is not valued until sickness comes along"

Dysautonomia isnt the only disease out there that people suffer from but it still is one of the worse. It does different things to different people. Doesn't matter if you have the same disease youre still going to have different symptoms. But that does not mean that you have to lie about stuff to get sympathy.

But the part that aggravates me is whenever people take the truth and just twist it around to make everything sound worse. I've been through all the symptoms and stuff of Dysautonomia. Some days I have alot and other days I only have a few. Yes I might post on facebook about "not feeling good" or anything but I'm not going to lie about it. I hate it whenever you talk to someone and they are telling you about them not having alot of symptoms but then you hear them talking to someone else and they start talking about them passing out, throwing up, high blood pressure, weight gain, medication reactions, etc just to get people to give them some sort of sympathy. Give it a break! It honestly pisses me off (sorry for the language). Do not tell someone one thing and then tell someone else another thing. You think that I wont hear you lying about it. I'm not that stupid.

Anyway, off that subject. I just had to vent. I'm sorry if it doesnt make any sense. I'm getting a migraine! I know its been forever since I did a blog entry but its been crazy. I had a friend fly in from Idaho to see my doctor and then her return flight got delayed and blah blah blah. Its hard to think about what to put in a blog whenever you dont feel good. So to my followers.....please stick with me on this. I'm trying my best to blog more because there's so much that I want to say. Its just the fact of feeling good enough to do it.

Sunday, October 3, 2010

You Never Know A Good Thing Until Its Gone!

The quote on the picture above is my new favorite quote. Its so true and says alot. Especially for people who suffer from an illness that has no cure. If you think about it (if you are healthy then imagine that you are sick) then you will know what I'm talking about.

Before I got sick then I was having fun and not caring about my health. Then I started getting sick and just thought oh this will go away and I'll be fine. I had stomach pain for a long time and kept going to doctor after doctor just to hear "Oh we dont know what it is". I finally found a doctor who knew said lets test your gallbladder. So we did test after test and they kept coming back normal. Then I noticed a knot in my stomach above my gallbladder. It started turning colors and something was pushing through. The doctor decided to go ahead and take it out. After my surgery then he came in there and informed me that it was my gallbladder but it was not infected and I didnt have stones. Somehow and for some reason my gallbladder had turned to stone and was trying to push its way through my stomach. Thats what the knot was. Go figure. After the surgery I felt so much better. I was thinking I was back to normal with no more sickness. Well I thought wrong. I started passing out and was sick all the time and never felt good. So yet again I went to the doctor and this time after many more tests  he was like "oh you have Dysautonomia". Well I had never heard of it and so the whole way home I was like okay well I'll take some medicine and then I'll be back to normal and healthy again. I got home and we looked it up and I found out it doesnt just "go away". Yeah I can take medicine and its supposed to help but I will aways have it. That sucked! The more I read about it the more I felt scared. I thought it was the worst thing ever. I had gone from a healthy and active person to someone who couldnt go outside due to the heat or couldnt stand up without tipping over. I started taking more meds and then started getting sick. Had to come off of those meds. I was able to take some meds for a few days before getting sick and then other meds I couldnt take at all. Medicine after medicine, doctor after doctor. No one could help. Most doctors I had to explain what Dysautonomia is. I'd go to the emergency room and the diagnosis was panic attack. I went to my original family doctor and was told to see a therapist and all my problems would "disappear". He started refusing to call me in a medicine because he swore it was in my head. I had to change doctors. I went through medications and doctors like a drughead goes through needles!  I was tired of doctors and medications. Three years had passed and I was still trying medicine after medicine. I had decided to make a facebook page for other Dysautonomia sufferers so that maybe we could share ideas to help each other. I didnt think that I would find anyone else with that disease. I had gone so long feeling like I was the only one with it because no one knew about it. I signed in one day and figured I'd check the Dysautonomia page (not expecting to see anything new) well to my surprise I hate over 100 people on there saying that they had the same disease. I felt relief to know that I wasnt alone. I met some very awesome people from it. I also met someone from my state who told me about a doctor here who specializes in Dysautonomia. I went to see that doctor hoping to get some relief. My first appt. with her I was scared of what she's say. Everytime I went to a doctor then they would say that they couldnt help me. I did a tilt test, stress test, echo, and ekg and sat there waiting for the doctor to come in. While I was sitting there I was preparing myself to hear those words "I cant help you". The door opened and the doctor came in and immediately she said "I'm so glad you came to see me. I think I can help you". I cant explain the rush of relief I felt after hearing that. She sat down across from me in a chair and opened the chart and said "but....." I was waiting for her to speak. She said "your test results worry me though". I was thinking well dang I'm worried too! She then said "You have Mitral Valve Prolapse also". I replied with "great something else to add to the list" lol She said she wanted to put me on a beta blocker to see if it would help. I was prepared to react to it and not be able to take it. The only thing it did was messed with my sleep. I couldnt sleep! I called her and she changed beta blockers and I havent reacted to it. Its helped me alot. But just when I was getting better, my panic attacks started and boy were they horrible! She put me on an anti anxiety medicine and that helped the panic attacks. I was doing good. She decided to do a 24hr heart rate monitor. So I walked around with my friend "Fred" for 24 hrs and boy was I glad to see him go! lol She called a few days later with the results and said "you've got a heart arythmia.Your heart rate jumps to over 200 while you arent doing anything so we are going to triple you beta blocker". So far thats the last diagnosis I got from her but I go back in Decemeber.

Thats my story of the past three years with health problems with some things left out. The point of this was to not only tell my story of how I came about being diagnosed with everything but to show that anything can happen to anyone. Like the quote above says "Most people spend their health finding wealth while others spend their wealth finding health". Its true. I spent my days of health having fun and not caring but once I got sick then my eyes opened to a new light. I then saw what other people dont see! Everyone goes through something in life and they move on afterwards. But there are some people out there who go through something every day that they cant just get over and move on. All the stuff I have been through has made me stronger, more passionate about life, and more aware of the things going on around me. To all the other people out there suffering from an illness that you will never get over..........You have my prayers always. Never give up because God has a reason for everyone of us! Even though there are times when we feel like we cant go on, God knows that we can and we will! He never puts us through anything that he knows the cannot handle! To the people out there who arent sick with a permanent illness and who dont pay attention and dont cherish their health and life........I pray that you never have to go through anything like this and I pray that one day you will open your eyes and pay atttention to not only yourself but to others also. Everyone needs to know that life isnt perfect! Something will always go wrong! God bless everyone.

"You Never Know A Good Thing Until Its Gone.....Especialy Your Health"