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Minor Setback

Today I feel like writing about my weekend and how one of my illnesses (I have no idea which one, probably a combination) made my plans for me. This happens often, but this one really pisses me off because I could have prevented it if I had a memory worth a damn.

The basics are that I had two of my prescriptions that were running low. In our area all of our Rite Aides were bought out by Walgreen’s and I had all of my meds set up for auto refill so I wouldn’t run out. And even resigned up in the past couple of months to be sure. Well, with my piss poor memory I forgot to go and see if they were ready. One of these meds I take three times a day and the other is twice a day. Well, before bed I didn’t have either one, and obviously they were still empty in the morning before work. By the end of the day I was so exhausted I barely made the 45 minute drive home without falling asleep. Shit. I forgot my pills. But I was not fit to be on the road so I went to bed. The next day I could not get out of bed. It hurt to move. I was so sick. I made it to my recliner and literally slept all day…and night. Still no pills. I finally asked for someone to go pick them up for me. So finally Sunday morning I take them like they were M&M’s. I am awake enough now to function around the house a bit but it will take a few days before I am back to “normal”. I am so pissed at myself. Like seriously.

Things like this really throw me for a loop. My body depends on my meds so much it is ridiculous. And no, these are not narcotics or anything addictive, they just keep things functioning. Like I am on a hefty dose of potassium and even with that my levels hover between 2.7 and 3.1. It is just crazy to me.

Anyway, this very happy and positive lady is frustrated today. I’m still smiling but I’m missing a football party at my friends house.

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RECAP

So I have been writing about my childhood a lot to give you a little background as to what I have been through and still stand while smiling. My positive outlook on life is what keeps me going. The next two decades of my life have knocked me down hard and has tested my belief of “everything happens for a reason” continuously.

One would think that my first two decades of life was enough…MORE than enough…for the average person to deal with for a life time. Think about it. Sexually abused on a weekly basis from the time I was two or three until I was eleven or twelve. Drugged and gang banged by “friends”. Physically and verbally abused by a “boyfriend that I was lucky to have” to the point of him beating a pregnancy right out of me. Parents are alcoholics. And my brother took his own life three weeks after my wedding.

Well, it wasn’t enough apparently. My physical abilities had been tested for all of those years now lets see what happens to my mind while I watch my kids go through hell. Which I will be writing about soon enough. But today I just need to absorb my first half of my life and sit here in awe as to how I even function. But the strangest thing is that I not only just function, I am happy. I am such a happy and positive person. I try to see the best in everyone, even the bitchiest ones. There is usually a reason people act the way they do and it usually stems back to their childhood. I have realized that I have a very sharp intuition when it comes to this.

My compassion and intuition comes from all of my past experiences. They help me relate to so many different people. And you guys don’t even know the half of it yet.

0-20 years of age: molested for about ten years, sexually abused, drugged and gang-banged, parents are alcoholics, physically and verbally abused, broken family, suicide of sibling, married and had a child.

20-40 years of age: daughter diagnosed with chronic, life threatening, extremely painful disease, son had multiple injuries “to the extreme”, raised niece, husband became disabled as well, being told in one weeks time that my child my not make it…son and daughter both. I was trying to take care of everyone and hold down a job for insurance and to pay the bills. Quit 2nd and 3rd jobs for health reasons, Got all three kids graduated somehow. Lost our home. My body shut down. I left my husband.

40-present: Severe depression, anxiety, PTSD, Intracranial hypertension, metabolic syndrome, cirrhosis of the liver (not from drinking), pre-diabetic, and all of the symptoms that come along with these diseases and their meds.

I read this and I cry but in reality I am very happy. My kids are all alive and are happy, well rounded adults. I’m not sure where I got the strength to have this outlook on life but I am so very thankful for it.

Everything happens for a reason and I do know that part of my reason is to help others by sharing my stories.

ALCOHOL AND SUICIDE

Today I couldn’t decide between alcohol or suicide, so I am combining them. Both have had a huge impact in my life. And because of them, I have made an impact on many others lives, hopefully for the better.

Growing up, everyone drank beer or whatever. I loved being able to go to the frig and get everyone a new one when they were ready. My parents, bio dad, older brothers, aunts, uncles, cousins and family friends. Of course I earned myself the nickname “Grace” because I would always drop the can or drip a little when I would help open them. I didn’t care.

I experimented a bit as a young teen but I always got sick so it didn’t have a great appeal. By the time I started dating the man that I would end up marrying, which was ten days before my 15th birthday, I had quit drinking all together. When this man and I were moving into our first apartment together when I was 17 and 7 months pregnant I let him know that he could have beer sometime with his buddies, but I would not allow alcohol to just sit in my home on a regular basis. I was adornment about it. I was scared of the addiction…or being around the addiction.

So anyway, we got our own place in November, had our daughter in January and got married that August. Life was good. I was a very good young mom.

A few weeks after our wedding we went to spend the weekend with my mom, step dad and gram. It was nice. They all got to gush over my lovable and happy 8 month old. What a great weekend right up until Saturday night.

One of my brothers called and was having a hard time. He was drunk and was asking for someone to come get him. My parents had been drinking all evening so they couldn’t drive, my husband and that brother had argued recently so he didn’t want to drive an hour one way to get him and I was only 18 and did not have my drivers license. So we didn’t think much about it and went to bed.

The next thing I know my step dad is in our room waking us up to let us know there had been an incident and my brother was dead. My world stopped right there. Game over. The end. My brother, the brother that I was closest to at that time was gone. He left me.

My life seemed to be a big fog for quite a while after that. I wanted to talk about it. About him. About what he did. But nobody talked about any of it. Ever. You know what everyone else did? They drank their pain away. I couldn’t talk to my husband because he was carrying so much guilt, my mom was too. I needed something. I needed someone to talk to.

I finally started a Survivors of Suicide Support group and was finally able to express my feelings in a safe place and help others do the same. We supported each other.

This weekend will be 28 years since he took his life. I try to visit or call my mom on his birthday and on the anniversary of his death. I don’t mention him, but I still reach out. Losing a child is not something I ever want to experience.

SEX

Today I am getting the feeling that I should be writing about sex. It isn’t exactly clear as to which route I should take so I am thinking I will touch on a couple of things. When you look at the big picture of your life they are all related anyway.

So we will touch on my personal experiences with sexual molestation as a child, sexual abuse as a teen and the waves of sexual interest as an adult.

We all have history, or a past, if you will, well mine sounds horrific when saying it out loud, but I always say that everything that I have been though in my life has made me who I am today. I always try to look at the positive side of everything and I believe that I was put through so much in my life so I would be able to relate to and help so many people along the way. So, in a way, I am thankful for every situation of every day of my life.

Yes I was sexually abused by an adult family member from the time that I can remember (3 or 4 maybe) right thru until I was 11 or 12. Nobody knew. I’m not sure how nobody knew, but I would like to think that something would have been done if they did. It finally stopped when I had a friend over and that person happened to show up too. I kind of panicked and told her not to open our bedroom door and I went down to get my grandmother to tell her to hurry up to our room….it was an emergency. She came running with me and sure enough she saw him trying to get in my room where my friend was. Thankfully a nightmare was dodged. But my friend demanded an explanation and I gave her the Rated PG version and prayed we could just put this behind us. It was never brought up again during our visit.

The next week we were sitting in class and I heard my name on the loud speaker being called down to the office. I was very confused by this since I was a really good student, a bit social, but not a troublemaker. I got there and was told to go right into the principals office and as soon as I opened the door my heart sank. There sat my parents. I knew it was very bad if they were there. I was pretty sure someone died. I was so worried and when I sat down the principal began talking. I heard the beginning about my weekend with my friend, bad man, told her parents, her parents told my parents and here we are. I just sat there. I was so embarrassed. I don’t remember anything after that, I am not really sure if I went home with them or if I went back to class. I have no idea. The only thing that I do know is that they never mentioned it to me again. Ever. Nothing. I was perfectly fine with that. We all went on like nothing happened. Ever.

I try not to think about it too much now, but I still wonder how much they know and why was it swept under the rug? As a parent I am mortified. But it was a different time then and maybe they did try and I just don’t remember. Who knows.

It wasn’t long after this that I discovered that I used sex to get people to like me. I didn’t see it then but looking back I can see that I felt like that is all I had to offer. I had no self respect or very low self esteem. That is all I had to offer so I used it when needed. I would drink a little but and smoke pot to ease my nerves. Until this one time that one of my “friends” drugged me with something and found myself on a bed with 4 ,5 or 6 men around me all taking turns having sex with me. But they weren’t raping me, I seemed to be enjoying it. I passed out. I woke up later and it was just one of them and I was willingly have sex again. I don’t know exactly how long this went on but it was long enough for the police to show up looking for me. I had to have been drugged. It was like I was a totally different person, my head was in a fog. I left with the police officer to bring me home. None of this was mentioned again.

A while later I was dating a guy that I was told I was lucky to date but he was an ass. He had sex with me like he owned me. It was rough. It was not fun. I am pretty sure he got me pregnant. I told him. This did not go over well at all. This was my fault and he beat my stomach with his broken arm that was in a cast. His sister came to get him, she came in the bathroom with me and I showed her the toilet. I wasn’t pregnant anymore. She told me to go to bed and she would take care of him. He was never a problem again.

Finally I got myself a decent boyfriend, he knew about my past and still wanted me. I have lived a normal life ever since. Of course I go through spells where sex is not high on my list, but between my past and my medical conditions that doesn’t surprise me at all. But I have my ways of boosting the libido when needed. This old dog can learn new tricks.

PCOS

Oh boy. Where do I even begin? PCOS (poly cystic ovarian syndrome) is the hardest disease to deal with. It affects me the most out of all of my other diseases/ailments. It may not be the most painful physically, but mentally it takes a toll every single day of my life.

I was 18 or 19 when I was diagnosed and was told that I was lucky to have had one child but odds were that I would never have another. Having been on and off the birth control pill through my teen years is actually why I was able to get pregnant. So, I knew what I had to to do when it was time for my second child.

Periods. Shall we talk about period problems with PCOS? Either I was going ten years straight without one or I was going 18 months straight without stopping. Light flow, heavy flow to can’t leave the house flow. Without warning you could stand up and just have it instantly come out around you super size tampon, your two nighttime maxi pads with wings and have it just pour out of you like you were dying, but then it would stop after you have ruined everything, embarrassed yourself and left whatever you were doing.

Hirsutism: Excessive or unwanted hair that grows on a woman’s body and face. This is a very sensitive subject for me. This one part affects me in many ways every single day. There are many things that I need to think about and do differently on a daily basis to even try to look or even feel almost normal. I am struggling even writing this. Maybe I won’t go into details right here right now, just know, that your not alone.

Weight gain/struggle to take weight off.

Ovarian cysts.

Hormones, OMG hormones!

My First Story

So, it is time to share one of my stories with you. The hardest part about this is picking the one that feels right to share at this time. I listen to my intuition a lot and it lets me know what someone needs to hear…and when.

This brings me back to my first weeks/months that I was at a new job, my current job actually. It had been less than a year since being diagnosed and they were still tweaking my pills to control the brain swelling and the effects from that.

I didn’t know anyone but they all seemed nice enough. This one lady in particular was my trainer, but they were all very helpful. Most of the time I thought that I was doing great. I would listen to my trainer, write a lot of things down and by the end of the day I felt pretty comfortable. The next day she would train me on something new and we would go through the same process. Great.

Personality wise I felt like this place was where I was meant to be. But for some reason I really was noticing a lot of frustration from my trainer. Then she looked at me very seriously and asked if she was doing something wrong? She couldn’t figure out why I wasn’t comprehending anything she was telling me? WHAT? I instantly knew what had been happening and just tried so hard to be smart for the next couple of days but would go home crying every night and ready to give up. I finally went in to see my boss and told her about my disease and my meds and what they were doing to me. I had nothing to lose at this point. She was amazing and wanted to do anything she could to work with me in a way that would work better.

We discussed it with my trainer and came up with a new plan. It didn’t matter if I had a masters degree or not. I was a complete idiot that could not retain information. I wouldn’t have been qualified to work at a friggin fast food restaurant.

Our new plan was working and my doctor ended up taking me off those nasty pills anyway due to the severe reaction. These coworkers of mine are some of my best friends today and we laugh at my earlier days along with the ups and downs in between with this disease.

About Me

Hey Guys, Today I will tell you about me so maybe you can get a better feel as to where I am coming from. I have an invisible illness, well, more than one, but today will be about my Intracranial Hypertension aka pseudo tumor cerebri aka idiopathic intracranial hypertension (IIH).

I was diagnosed at my lowest point back in December 2014. I can see now that I had it for quite a while but was never diagnosed until I was almost blind. It took months for the doctors to get some stability back and have me back to a functioning mode. Not great mind you, but functioning.

The basic gist of the rare disease is that all of our bodies produce CSF, Cerebrospinal fluid , that is found in our brains and spinal cord. It is continuously produced and absorbed into the body. In my condition, my body is producing as much as everyone else but it is’t absorbing it. The fluid is constantly building up around my brain and causing extreme pressure which in turn causes so many problems.

There are horrible side affects, but at this point, i’m not sure which ones are caused by the disease or the medications to treat it. But trust me, being off the meds is much worse. I’m pretty sure I wouldn’t have lived this long without them, well, I definitely wouldn’t have wanted to. The pain is horrendous. And i’m not just talking about debilitating headaches.

My memory loss makes me sad. I used to be pretty smart. I loved to write. I used to write professionally but I noticed my abilities were fading one summer. I thought I had writers block. But it was just my brain not being able to use proper English. I wrote and started speaking very slang. Nothing proper at all. I’m used to the talking now and have improved the writing a bit, but certainly not the quality to call it writing. I think of it more like writing in a diary now. So let me apologize now for any and all errors you all see in any of my writings. I would fix them if I could find them but my brain just doesn’t work that way anymore.

Another thing that I have had to give up is my ability to be on my feet. This probably sounds minor to some but it is horrible for me. Before getting diagnosed I worked on my feet for ten hour shifts and never gave it a second thought. I loved to hike too. The one ability I had was that I could walk forever, as long as I went at my own pace for my breathing, my legs never gave out on me…or my back. Very strong core I guess. I was a runner as a teen so maybe that helped. But, now, I can stand up long enough to take a shower then sit, get dressed, then sit,do my hair and then sit. My feet have to be up. I actually shave my legs while sitting in my recliner now. I bought some really expensive nursing type shoes to see if that helped and some memory foam sneakers, they do seem to help a bit but not enough to make a difference. Now, I am not to proud to use a wheelchair but when I have mentioned getting one people can be pretty mean. Some laugh and some say that they would stay home before using one. I have put on a bit of weight since being diagnosed and I have my own fear of people looking at me in a wheelchair and thinking I wouldn’t need one if I exercised more. True statement. But easier said than done. So, my answer has been to miss out on so many things due to not being able to stand. I also have a very hard time in higher elevation, my brain loses a lot of function and I sleep a lot after spending a few hours visiting my mother.

Moving on…so now that you have an idea about my invisible illness, you can imagine what this all means financially. I have a degree and used to make fairly decent money. But, when I lost my brain function and walking abilities it limited my job options quite a bit. My writing jobs were done. I couldn’t go back to my on my feet job, so I had to look for something completely different. I finally found a full time job with benefits, I would be able to sit down but I had to make it through my training. I don’t even know how I did it. My co-workers liked me personality wise, but I would go home crying every night because they looked at me like I was a complete idiot. And I was. It doesn’t matter what kind of degree you have at that point. But thankfully they were desperate and needed a warm body in the position, so they kept me. I make a lot less than I ever have but it is an income and I have benefits. At this point I am very thankful for this. Not to mention that I love my co-workers. They are like a second family to me.

So, while I work full time and see my neurologist frequently, my meds have the pain under control as long as I understand my limits and consequences. I spend a lot of time at home in my recliner online doing research on everything. I read different versions of things to get a better understanding of that particular subject. I have learned so much about who I am and what I believe in. I look at life differently now and have kept my positive attitude.

Stick with me on this journey and you will come to see how I can change your life for the better. We all have ups and downs but it is the big picture that matters most. I am here with you. Lets do this together!

Welcome!

Hey Everyone, Thank you for taking the time to check out my site. I am just getting started but have A LOT to share so please bare with me.

I have been racking my brain for the past few years on how to help people. I know that sounds bizarre but call it a mid life crisis if you will, but I have been feeling this need to somehow be there for others. The biggest stresser for me is every idea I come up with involves some sort of degree or ability that I am physically unable to do. Invisible illnesses sucks. So I heard something today that got me thinking…Who would my “match made in Heaven” audience be? It just dawned on me that the people that I would relate to the most are people just like me or have similar lives.

So here I am. I am just going to take the time to share some of my stories of myself, my children, my family and my friends. I have a lifetime full of disease, trauma and tragic situations that have not been any fault of my own and have lived through it all with a great attitude but in solitude for the most part.

There are only a select few people in my life that know me…that really know me. And that is a bit sad but has always been my choice. I am very intuitive with most people and its not hard to tell when you have talked about your “problems” long enough. So I just encourage them to tell me about their lives and try to do my best at helping or supporting whatever situation has them down. I would do anything in my power for anyone in my family and/or friends.

That is my calling I think, to help people. I smile a lot and love to laugh. My personality is fun, friendly, honest and very sincere. It is a great feeling to be talking with someone that is suffering with depression/stress and is at a very low point in their life and to have them laugh and get a sparkle back in their eyes. Even if it is just for a short time, it makes me feel good to give them that happy moment.

Having my picture taken kind of sucks, but it also makes me sad to look back at events and see hundreds of pictures of everyone else and no memory of me being there. I’m trying to get better at that. I take a ton of my own pictures for memories. I have a problem remembering things already, I can’t imagine where I will be in twenty years.

So, anyway, this is me and this is my new thing. I would love to have you follow me if you can relate or are interested in what I may say next. Please feel free to comment or inbox me anytime. Hearing from you will help me to stay focused enough to keep going. Thank you. Angela

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