Blessings In Life

It's been awhile since I've posted on here because I lost my disability case at the hearing with the ALJ so now I have appealed it and my case is going to the next level up from the ALJ hearing. If I lose again we may have to go to federal court or refile for disability. It's already been 3 years and they are telling me another 2 years at least and it's like what am I supposed to do in the mean time not being able to work and with no money coming in. I'm still fighting though and trying not to give up, been praying lots.

There have been some very good things in my life that I'm thankful for. One of those is a new friend Named Kanetha that I met through our Mormon Church. She is very kind, honest, caring, and a great friend and has been there for me like no one else lately. I appreciate her a lot in my life and thank her for everything.

I also met a guy! My second boyfriend now and he is sweet, caring, honest, helpful and said he'd be there for me with my medical issues which he already showed me Saturday when I was starting to hurt. He put his arm around me, hugged me and we held hands but he never over stepped his bounds. I told him I wasn't ready for kissing or anything more yet until we get to know each other and Saturday he really listened and didn't push it. When he first got here he brought me a rose, horse calendar and a chocolate hershey's kiss. I'm not used to all the hugging, hand holding and stuff from a guy but I do kinda like it...I feel wanted, needed, loved and safe. It's gonna take some getting used to because this is only my second boyfriend but I hope it works out.

More good news is that I found a great stomach doctor who knows what CVS is and has me on some good meds called Amitriptyline 50mg nightly and Maxalt (for headaches) as needed and I haven't had an episode in 5 months!!! I've had some pretty close calls where I have to pop a Phenegran and lay back down and sleep it off but I've stopped them from progressing to full vomiting attacks and that's a first in 20 years!! I've stopped about 8 episodes in 5 months and for me this is amazing!!!

God helps when you least expect it and need it!!

Roller Coaster Of Life

So I know you've heard that saying "roller coaster of life" and I'm sure you've heard it more than once in your life. That's the way my life has been the last few months from the surgery in April til now my life has been upside down, not that it hasn't always been.

 I went back to work in July and then this past Saturday I lost my job for stupid reasons. I was on the self scans that night and they were acting up. They kept freezing up and wouldn't accept anyone's payment cards, aka debit or credit cards. After 4.5hrs on them I was getting frustrated and had went to work sick anyways. So I called for help from a CSM manager and she basically said we couldn't shut them down and then as I was asking her for some help on the she just up and walked away as I was talking to her. I waited 30 minutes and called a CSM back for some help and she got an attitude with me so I got one back and told her I was going home since I only had an hour of work left and she told me to go ahead. So I went back to the back as I was looking for a manager to talk to and as I turned the corner a manager pulled me into his office and it was basically 3 against one and I didn't even get to tell my side of the story. He asked for my badge and I threw it at him and went to my locker, got my purse and threw the lock in the locker without even locking it. I was crying the entire time and cried all the way home. I had to take a different way home so I wouldn't drive off the bridge I've been wanting to drive off of and I stopped at a store up the road and called a friend because I was so upset.

So now I've filed for unemployment, food stamps and medicaid and on August 31st I have my disability court hearing to see if I can get benefits for being so sick and not being able to hold down a job. I've tried to work and have lost every job, I  can't even work part time so I don't know what to do if I don't get disability at this point. If I do get disability I am going to get my dream truck I've been wanting for years because I think I deserve it after 20yrs of being sick and dealing with school and work. I deserve to spoil myself with my dream truck and I'm giving mom some money for clothes too and myself for some clothes and pay off all our debts...right now we are hurting bad money wise.

Right now it's a battle trying to hang in there through this ride I call life. It's such a struggle feeling bad almost 24/7 and it's so hard not letting it get too me, I'm not gonna lie I'm so depressed and down right now and stressed to the max. I just really need a break and I'm praying that "break" is when I win my disability case on August 31st...just 30 more days and that's it...FINALLY my life may change around, I'm PRAYING it does.

Upcoming Surgery

I am scheduled for a gallbladder removal surgery one Monday April 30th which is this Monday coming up and I've got so many thoughts running through my mind like a water faucet that just won't shut off or the blades of a windmill in the country spinning and spinning and not stopping. Part of me is ready to get this gallbladder out and see if it helps with my CVS attacks and part of me is scared to death it's going to make the CVS much worse than what it already is.

 I'm praying that doctor Seneshen is a good surgeon and praying that her hands will be steady and not mess anything up in my already messed up stomach. I am most scared about the tube that will be put down my throat after I am knocked out because my teeth are so messed up from the CVS and are very fragile and I am scared they might knock out some teeth or chip them even more. I am scared I won't be fully out before they insert the tube and hook me to the ventilator and I will feel it. I am scared of the pain after the surgery, scared of the recovery, of clotting, of the incisions getting infected, of having stitches or staples and having to deal with the pain of getting them removed....I am just overall terrified of the whole thing. I really want to chicken out right now and not do it but I know it does need to be done and the longer I put it off the worse my anxiety will get over it. It's to be done at Clark Memorial hospital at 12:30pm Monday but I have to be there at 11am for registration and pre-op preparation. Everyone is telling me to "relax, it will be fine nothing will happen," but that doesn't keep me from being scared of all of it. I know I have my mom and everything but I will my dad cared and was around, I haven't even told him I am having surgery because he won't care anyways so what's the point of me telling him for him to tell me he doesn't care and then get me even more upset.

Anyway, I do have a hard time dealing with pain for some odd reason. I am such a big baby and I tend to whine and not being able to move after surgery without hurting is really going to get to me I think but I can do it with my moms help but also hope that friends stop by to see how I am doing after the surgery. I don't have many friends so I don't really count on it. Either way I'm scared to death and just hoping and praying that everything will go just fine before, during and after surgery and that healing will go smoothly and will very little pain or at least tolerable pain. My life is hard to handle dealing with all the medical issues I have and now gallbladder surgery on top of it, I'm really needing a break right now before I lose it literally.

20 Years Without A Diagnosis

It all started for me 20 years ago around the age of 4 years old. I would get sick and run to the bathroom without warning and then I'd go back and start playing like nothing had even happened. My mom begin taking me to doctors of all kinds...Gastrointerologists, kid specialists and even mental doctors but no answer could be found. I had every kind of test one could think of to diagnosis stomach issues...Endoscopys, cat scans, MRI, ultrasounds, gastric emptying studies and many many more. I was even put in two different mental hospitals because my mom was listening to the doctors who all thought it was in my head but I knew that it wasn't but yet no one believed me.

A little over a year ago I was watching a show called The Doctors on tv and heard about something called Cyclic Vomiting Syndrome that I had never heard of before. Chandra Wilsons daughter from the tv show Greys Anatomy had it and it took her forever to figure it out like it did for me. I had never heard of anything so close to what I was going through so I was shocked that it was an actual condition and I was also relieved to know that it really wasn't in my head. I knew what I had and I had waited 20 years to know. I took the information to my doctor who then sent me to a gastrointerologist who finally gave me the official diagnosis of Cyclic Vomiting Syndrome. I was so relieved to have a diagnosis but so sad and disappointed to know that there is no cure for it and that they don't know much about it yet. It basically can only be treated with meds and you and the doctors have to try things out to see what works best for you but it can't be completely cured which has had me down in the dumps a lot but knowing what I have has helped me SO much the last year because I can tell people what it is now and it's not in my head, I KNOW that now.

http://www.thedoctorstv.com/videolib/init/3705


http://abcnews.go.com/Health/Wellness/greys-anatomy-chandra-wilsons-real-life-medical-mystery/story?id=13328839#.T42t16tAZf5

More Hospital Tests

Well a lot has been going on lately which is why I haven't really written much. I'm having some tests this week at the hospital and I'm so nervous about it all for some odd reason. Thursday I am having a Hida Scan and Ultrasound done at 1:45pm at Clark Memorial to check my gallbladder again. And then Friday I am having an Endoscopy done at 9am and biopsies taken to check the lining of my stomach and things. I am SO scared about being put to sleep and worried that I will feel something during it and I am freaking out but trying not to show it to my mom or the girls from church. I almost want to chicken out and not do it but I know it does need to be done.

And something that has been bothering me is when people say "you don't know how much I have to do, it's a lot" or "Mine is worse then yours" or "I'll trade ya." It's like how can someone say that their issues are worse then mine if they don't even know what I have to go through daily, I don't say that my issues are worse than anyone else's because the truth is I don't know what others are going through so how can I say that mine is worse. I hate when someone thinks that what I go through isn't bad and that theirs is worse because they just don't know that it is or isn't. I mean I dare someone to walk in my shoes for one week and see if they can do it because mine isn't easy either, just like what they may be going through isn't easy either. We all have our own struggles and it's not a competition on who's is worse or better, we just need to support each other and not have a dang competition with each other.

Ok, vent over for the night I guess. So worried about the tests and surgery Friday, ugh need to chill somehow.

Dealing With Emotions

It has been a long last month or so. First it was another CVS episode, then a really bad cold of some kind, then dizziness and passing out episodes at work and now it's emotional stuff along with not feeling the greatest.

It's almost my 24th birthday and I'm really frustrated and upset because I am only almost 24 and having to deal with so many medical issues. I go to work everyday and see girls my age going to work and school and some have babies as well and here I am hardly handling a part time job right now. I get, I guess one could say, jealous of them and it upsets me because I want to be that normal 24 year old doing what the girls I work with do but how am I supposed to go to school when I can barely handle work as it is. How do I look at a baby and not wonder if I will ever have that in my life, how do I not get upset about it. How do I act positive when I am puking my guts out from the CVS.

I feel like no one gets it and some people judge me for things I do and/or say. People tell me that I can do things when they don't understand that I physically can't do it and wonder why I'm upset about things. I feel like a no good failure a lot of the time because of my medical issues. Sometimes I wonder why not just give up and be free of the pain. But other times I feel like I can do this even if I do it alone. I just feel so sad right now, so tired of dealing with medical issues and wish I could just make it all go away but I can't, all of the issues will always be there because there's no cure for the things I have. I just must learn to deal with it somehow, someway. It's just so hard all the time......Happy Birthday to me....Saturday.

Those Who Care For Us...

Over the last two weeks as my Cyclic Vomiting Syndrome caused another bad week and then a bad cold has had me feeling horrible for a second week, I have thought about and talked with people about my medical issues and what they cause. I don't really like to talk about them to others because I always feel like no one understands or they judge me so I prefer to write/type about them to get things out. I have issues where people want to know what I have but it's hard to explain to someone that doesn't know what those things are. I mean, what I go through because of each illness is hard to explain....

Just the other day a friend of mine was talking about how she saw a tv show and some research they did about how much sleep to get. She was saying that everyone should get 6.5-7.5 hours of sleep a night. Well, for someone who's healthy that may be fine but for me it's not and trying to explain that to her was not easy. I feel like she does understand some but she can't fully understand because she doesn't have the medical issues I do, nor does anyone else and for me to explain that I have to sleep more then some people was hard. I have to sleep at least 8 hours a night or I'm too tired to function....the PCOS and CVS both cause me a LOT of fatigue and the CVS will flare up if I don't get enough sleep so I sleep til I feel I've had enough so I don't have a flare up. It's not like I'm lazy or what not, it's that I am extremely tired most of the time so 8 hours of sleep is my minimum amount nightly to be able to function.

It's just that some people really care and try to help which is ok and some push me, get me upset and don't fully understand why I only work part time or why I need so much sleep or why I'm not as energetic as a normal 23 year old should be. Sometimes my own mom doesn't understand that I have to sleep so much, she doesn't understand when I come home and don't feel up to helping her do stuff around the house, she doesn't understand what my body feels with 6 medical issues after a 9 hour work day. I hear people at work saying all the time how they work two jobs and sometimes go to school as well and I get upset because I wish I was able to do the same things and handle it but my body just won't allow it.

I just wish people, whether they understand or not, would not look at me like I'm lazy because I can't work 2 jobs or full time, or because I don't go to school, or sleep too much. I wish they would just love me for me, medical issues and all and not judge me or get me upset. I am proud of myself though for handling this job for 6 months now and for fighting all 6 of my medical issues every step of the way...I wouldn't be able to do it without God, my mom and my best friend/big sis who believed in me when I didn't even believe in myself.

Talks With Others Who Have Medical Issues.....

There are times in which I feel so alone with all of my medical issues, times I think that no one understands what I go through, times I think why me, times I feel so bad that I cry myself to sleep in my bedroom so my mom can't hear me. But the last few days, I don't feel as alone.....

 I've been working at Walmart as a cashier for a little over 4 months now and I have been fighting to keep the job with everything in me. I've heard several employees say they work two jobs and ask why I don't because I'm young and I can handle it. Little do most of them know the many health struggles I face daily at only 23 years old. I've told a few cashiers that I've gotten to know pretty well but over the last two days when we've been super slow after the Christmas rush, I have been able to chat more with two of the girls I work with who are also cashiers but whom I haven't had the chance to speak too before. One of the girls I talked to yesterday told me about all her medical issues and she has a lot like me, one of them being blood clots. She said it scares her and she still gets twinges in her legs from it.

 Another girl that I talked too tonight, while sitting outside on my break, told me that she was crying at every little thing tonight, that customers were saying things and she'd start crying, that the bosses were getting her upset and that maybe she started this job too soon. I told her that I lost my 1st horse 4 years ago today and was crying about everything as well. She told me about her story....she was in a bad car wreck when she was pregnant and had her two other kids in the back seat. The two kids in the back seat didn't have a scratch but she ended up having numerous broken bones, internal injuries, bleeding issues and lost the baby she was carrying. She ended up having blood clots and was on blood thinners for some time. I told her my story and we both cried and then hugged. It hit us both hard. I don't feel as alone now.

A girl online on the CVS  facebook page has also reached out to me the last few days and it feels so good to talk to someone who has it like me. Feels like I am really not alone in it now. I don't know anybody in person who has it and when I say I have it people look at me like I am nuts or something because they have never heard of it. It just feels good to be able to talk to someone who knows what CVS is and can really relate to it and knows how I feel and doesn't just act like they know how I feel.

Anyways, just wanted to share this as I've felt so alone for some time.