Saturday, December 26, 2015

Prologue

I started to title this God won't put any more on me than I can bear because that I the subject matter for what I plan on writing about. I will warn you, this will be a lengthy blog but it will really help to see who I am. Due to needing this in chronological order I messed with the dates but I will always list what happened when and most of these posts will be written March 2011. When I get all the stuff out that happened in the past, I will switch to the present and I will let the readers know when that happens.
So what is the purpose of this blog? Well, there are several. One that is probably the reason I started this is I have no one I can tell my story, the whole story, without embarrassing myself, hurting my family and when it comes down to it, I don't have one person in my life except maybe my therapist, that I would even want to share it with. It is too personal but on the other hand, I am tired of all this stuff collecting and spinning around in my head. So I want you the reader to read this. All of it. Comment, criticize, whatever, but do read it, and you will see me and know me better than anyone I know personally. I desperately want to be known and understood. I want to make connections with fellow human beings. My life these days is desperately lonely at times and just to know someone read my story and gives a crap means everything to me. I also want somehow share my story so that others may be blessed and God may be glorified. If I help one person somehow through my experiences, then I feel like my life has been worthwhile.
This isn't an honest to goodness autobiography. Don't get me wrong. Everything in this story is true, although names have been changed just to give it some anonymity. But I will not really talk much about my childhood. It was happy and uneventful enough. And, other than some teasing about my weight, and never having gone out on a date, I survived K-12 with my happy go lucky, optomistic idealistic spirit in tact. I will touch on college, but the bulk is from age 29 to the present. Because that is the time when my world was flipped upside down and yet I survived. Or at least I am surviving. The ending has not been written for any of us, yet.
And lastly, briefly, I cannot go further without stating, Jesus is my savior. We all are sinners by birthright and by choice. That sin debt had to be paid, or we would all burn in Hell for eternity. But God sent his son Jesus, who was also God, I guess the way cats are cats and dogs are dogs, the trinity's species is God. That is the best way I know how to describe it, anyway Jesus died for our sins and paid the debt none of us could pay ourselves. You can't be good enough for heaven. Even the whitest sheep is dingy compared to the purest white. That is how our goodness stacks up against the almighty God. We are like dirty laundry, but Jesus wants to change our lives and if we will only repent of this sin nature, that just means to acknowledge it and be sorry, recognize and accept Jesus' awesome gift. We will be born again and live for eternity in heaven. And I am not talking about a place where we float on clouds with harps. That is boring. We are going to be perfect, Blissfully happy, never hurt, physically or emotionally, always have a reason for being, a reason to exist, a reason for rejoicing. We will know love, love like we never experienced on earth. We will never want for anything. Never need anything we can't have. And we will have the one person who we can depend on face to face. I don't know about you, but I can't wait to go there! I hope to meet you there.
                                                                                                       Miss Tunstall

Thursday, November 26, 2015

Chapter One - Intro to a fairy tale gone horribly wrong

 I will give you a little info about myself. I am 30 years old, single, never even been kissed. I have struggled with my weight my whole life and that has made me somewhat retarded socially. Up until I was 29 years old, I was kind of a head in the clouds happy go lucky person. My mother was my best friend, my co dependent partner, and my everything.
I tried to be "normal" I got a college education after sampling about every major there was to offer, and settling on religious studies because, hey when all else fails it never hurts to learn more about Jesus and other religions so I can witness to them better, right? To this day I have no earthly clue what career I want, if I can ever work again, but I am getting ahead of myself.
I have a history of mental illness, although if you looked at my family long enough I think you would find I am one of the sane ist (if that is a word.) Basically, I was your typical someday my prince will come if I lose enough weight and become a pretty enough, successful enough, fill in the blank. Terrified of responsibility because my mother always did things for me I began to believe I wasn't capable of most things. My social anxiety made it such that working outside my home became pretty difficult and I never had a full time job longer than 6 months. I had frequent bouts of depression, but my mother took care of me and I knew unconditional love. That is the most precious commodity that we often take for granted.
Most of my time was spent planning this future that would be amazing. Wedding dresses, children's names, decor and interior design out of magazines, even home school curriculum and private schools. I would imagine this perfect ever after life I was going to have. I would do crafts, own animals, have a loving husband, and be a homemaker. I designed wedding dress after wedding dress. I clipped out clothes from magazines that I would wear when I was thin.I sang a lot. Music is a big part of my life. I love everything from Mozart to Mariah Carey. I sang in church, had private lessons in college and music became a very large chunk of my identity. I may be a lot of things but I can sure sing.Singing and writing and reading are the three biggest things in my life, at least up to this point. Runescape is up there pretty high now lol but I digress.  I had all these obsessions, fueled by novels I read, places I wanted to visit. Never did I really get that we make our lives what they are, they usually don't just happen, and that happily ever after isn't really a city or country on this planet.

Monday, October 26, 2015

Chapter Two, A birth and a trip to ER..not the show.

Two events stand out as the real changing moments of my life. The first I didn't recognize as such... My niece whom I will call Lissie was born August 2003. My sister whom I will call Theresa was married to a bad guy for 10 years, had a child with him whom I will call Ella, and got hooked on prescription drugs, he divorced her and the rest was a downward spiral. She got involved with creep after creep until one creep knocked her up. I moved in with her temporarily to help out and after 3 days, took Lissie back to my mother so Theresa could rest some. As a result or maybe as a consequence, I don't think she ever truly bonded with her. She took her for occasional visits until at the age of 3 weeks while in Theresa's care, was present when her father tried to kill her mother. At that point Lissie really became ours. I had so many plans and dreams for her. When she was 3 1/2 we learned she was autistic. That really was hard because I wanted the same kind of relationship I had with my other nieces, and while she is very loving and we are blessed she isn't more severe, she can't really give back the same level of affection and bonding. Also, it makes her a ton more work and you have to think of things you wouldn't with a typical child. She practically has to have someone watching her every minute because she can be very distructive, and while she has some language, it is hard to communicate with her, and sometimes, it can be very stressful to be around her, especially for someone with anxiety issues. Sometimes just listening to her can stress me out, as she can be very loud and will have tantrums over the smallest things.
August 26th, 2009 will stand out as the other  life changing day... or the start of a lifechanging period you might say. Up to this point, I had a part time job, played games online, watched my niece sometimes for my mom, played with my cat, until he died the previous summer, and was basically oblivious to the turmoil around me. I had a few dreams...I was going to get a job, maybe go back and get my masters and be a librarian.
The bulk of that summer was spent finally learning to drive. I actually ended up getting my license august 2010 because some things got in the way but it was the first time I really got over my fears and started enjoying driving.
The first thing I noticed that summer was an increased sex drive. I did things I was ashamed of as a Christian. I am a virgin in the sense that matters, but I masturbated internally and externally, had cyber sex, and watched porn and read erotica. However, orgasms were becoming increasingly a mixture of pleasure and pain. I didn't think much of it, after all, what did I have to compare it to?
I lost 10 pounds. yay! I thought. Maybe my metabolism is speeding up. Then I had nausea that was so slight and gradual it really wasn't detectable. I would have moments of I don't feel so good, and as soon as it came over me it went.. Then I started having gagging spells in the morning. I joked I might be the only virgin who gets morning sickness. 
The other thing I noticed is my periods were getting more painful, heavier, and longer. I had just been switched to a stronger birth control pill to regulate because I was having a lot of breakthrough bleeding even while on lutera.
But on this day, everything came to a head. I remember waking up from a nap and getting up to get ready for work. I had this sudden sharp pain that made me double over it was so bad. I went to sit on the toilet and I had a bowel movement but I couldn't push or anything. The pain was so great it was like as the poop went through my colon it was stabbing me.After I was done I just lay on the bed sobbing it hurt so much. My mother immediately thought I could be having appendicitis based on the location of the pain, intermittent nausea and a slight fever so I went to the ER more worried about the fact I was uninsured than anything else. I had people pound on my stomach repeatedly (does that hurt, how bout this) it was like a black comedy, I really must have a twisted sense of humor because I look back on that ER visit and laugh. I was sent down for a CT. It showed some kind of mass but "we don't know where it is coming from, it could be infection from your appendix, it could be a fibroid tumor, we just don't know but your uterus might need to be removed" that last comment made me angry because a man said it and I felt like saying how would you feel if someone told you nonchalantly that your testicles might need removing? Anyway,  so they sent me down for an ultrasound. I conveniently left out the fact I was a virgin because I wanted them to do whatever they needed to do to get to the bottom of this so I let them put the wand thingy up me (after all, I seriously doubted I had any hymen left) and this "mass" was blocking the view of my left ovary, they couldn't see it no matter what they did. So the next step was an MRI. This is probably the most humorous part of this 32 hour ER visit. I go in and I swear he was a dead ringer for that indian dude on Heroes. beautiful english accent and I kinda dug him lol. Anyway, He put earphones over my ears because the MRI can be loud and I kid you not, the song that came on the radio as my back is killing me from having to be still while my side is throbbing intermittently and I am contemplating what the heck could be wrong with me was "if I lay here...If I just lay here...would you lie with me and just forget the world?" or otherwise known to Grey's fans as Denny's song (the song playing when Izzie is laying next to Denny's dead body... yeah major fan... anyway) Isn't that rather hillarious?
So to wrap up this segment of my story, a very sweet Russian doctor was fighting tooth and nail to rush me into surgery but money matters won the day. I was uninsured. I had to apply for a special insurance the hospital had for low income people before they would do anything. They told me it was one of those things they couldn't really diagnose without an exploratory laparotomy. So into the quagmire of medical insurance bureaucracy I went.

Saturday, September 26, 2015

Chapter Three - money matters and being filleted.

So we last saw me leaving a bizarre E.R. I had my insurance appt 3 weeks later. By that time the nausea had turned to vomiting.Also the "mass:" had a life of its own and would get twisted somehow causing intense pain and it pushed against my intestines causing me to feel very sick all the time. I did qualifiy for the insurance and went back to the e.r. thinking, ok I am insured now so lets get this baby out. For some reason it has to be in the computer first. My Russian Dr did her best and she sent me home with her personal cell # to update her about my condition.
For the next two weeks I was a real wreck. I only later found out how close to death I was. I was bleeding profusely from an 18 day period each month, combined with my now 30 pound weight loss due to not eating and vomiting, my hematocrit was down to 22.7 indicating severe anemia.I think being obese worked in my favor a little because I had the weight to spare. Finally, I get the call. Surgery is tomorrow. come in right now for pre op.
I was so weak I collapsed in a ball of dry heaving a few feet from where I was supposed to go. I was vomiting bile into a sweat shirt because I was too weak to go to the bathroom. I then went home to somehow drink go lightly. nasty bowel prep makes me nauseous just thinking about it. I managed 5 glasses then vomited. Luckily I hadn't eaten solid food in 2 weeks so bowel prep was really not very necessary.
At the last minute my dr ordered a D&C  due to the amount of vaginal bleeding so I awoke 4 and a half hours later actually hungry! and even broth was delicious! I awoke to some bad news. They had to remove my left ovary with the fibroid tumor, but I still had a shot at having kids. No cancer was visable and I was going to be fine. My first stay in a hospital was a pleasant experience. Lots of nice drugs, friendly nurses and concerned family and friends. That week was one of the nicest in my life. I saw old friends I hadn't seen in years and I was the center of attention for a little bit.
I got a phone call exactly 1 week from my surgery from my Russian doctor. How are you feeling? She asks me. I told her I am healing faster than I even thought and felt much better. She pauses and says you are going to need another surgery I'm sorry. I am a little confused and I say ok, she says you will need a hysterectomy. report to oncology tomorrow.
All I could think about was no kids to name...no babies to breastfeed no strong yet gentle son to take care of me when I get old...Then it hit me...I have cancer.

Wednesday, August 26, 2015

Chapter Four - mortality, miracles, and a really big hole.

I now had a new identity. Cancer patient. somehow it was comforting. I wasn't this girl who had arrested development and morbidly obese and nothing really special, I was special because I might die. Everyone came out of the woodwork to give me food, prayer quilts, all kind of attention and love. For about a month I really grieved the loss of ever having biological children. Then something very strange happened to me. I didn't want children anymore. I didn't want the responsibility of one day dying and leaving them. I didn't want to ruin a child. I didn't feel like I could give a child anything they needed. I felt like a child myself. I figured if I ever "grew up" and got married I might want to adopt, but I was happy to put that on the shelf for now.
My oncology appointment was a little scary. I had talked myself into believing the night before that  they probably would get it all. Probably just a smidgen of cancer, nothing to worry about. "your D&C revealed cancer cells in the endometrial lining. We won't know much beyond that until we remove your uterus, but you have stage 1C ovarian cancer and we found a 1cm carcinoma on your appendix."
The second I heard the appendix I thought, oh Lord, it has spread already, I might actually die... and the other scary fact... I woudn't just need surgery. I would also have chemo. I would lose my hair. You have to understand that since I was around 18 I was addicted to hair salons. I kept getting it cut because it takes too long to grow out and I needed pick me ups. It made me feel beautiful. Well that whole year I had really committed to growing my hair out and I had finally gotten it past my shoulders and I loved the length. Now I was going to lose it.
So I was scheduled for the second surgery and I have to say, it hurt a whole lot more and they gave me less drugs... go figure. I eventually found out some rather shocking news. I had 3 separate cancers....all stage 1. The odds of that happening are very very very rare. Which means I probably have the brca gene or lynch syndrome... in a nutshell my genes are rubbish.
So after I got home I developed a bad infection called cellulitis and was put on strong antibiotics. Also, to add insult to injury, I can't have kids but yet I start producing milk. They still don't know why that happened but I had a good bit of milk for about a week. Probably hormones being jostled around combined with stress.
So Then they took the remaining staples out and said, we are going to have to open this... I didn't know what they meant until I saw them take a Q tip and start swishing it around until I had a hole in me the size of a silver dollar and about 2 inches deep. For the next 3 1/2 months or so we had to pack that hole and clean it. I call that the waiting period. Waiting for chemo, waiting to get on with my life. Just taking it easy, doing what I want and never having to worry about a thing. I didn't realize it, but the biggest challenges, and sorrow were ahead of me still.

Sunday, July 26, 2015

Chapter Five -Closing the hole, Chemo, and Catastrophe

Finally towards the end of January 2010, I was finally healed up. I had a portacath placement surgery, which was the funnest surgery to date. I was in twilight sleep and kept waking myself up snoring. It really didn't hurt more than when you sleep wrong and your shoulder is sore. Meanwhile my mother had been having some pain in her side for months. One Dr told her she probably cracked a rib and to go home and tape it up. Finally a dr ordered a chest x-ray. She had a mass in her lung the size of a lemon. So while I was having my first chemo, she was having a biopsy.
First I want to discuss Chemo. Initially, besides some boredom, actually having it pumped into you isn't bad. I got to be close to my chemo nurse and it is hard to complain when you are relatively healthy and you see all these people on death's door. For about the first week following chemo I experienced massive indigestion, like when you eat cold greasy chicken and burp up that unpleasant taste. Also my skin on my face got red and uncomfortable. Not as bad as a sunburn but maybe like windburn. And it was rather waxy. I wasn't fully prepared for the joint pain and fatigue but it passed in a couple days. Fatigue was something I lived with every day of this journey but sometimes in those few days following each chemo I barely had enough strength to move a computer mouse. Basically it was 1 week feeling like crap, and 2 weeks recovering from feeling like crap. Then it started over again. However I had no nausea or vomiting during the first 3 of the 6 treatments.
My mother's first biopsy was inconclusive. I thought, well that means it probably isn't cancer or is only slightly cancerous or it would have shown up. I don't know if I was selfish, or just too full of my own battle, but I never for a moment worried about my mom during this stage. I had my head shaved in March once my hair started coming out in clumps. I enjoyed my hats and scarves. The wigs never felt natural. I actually didn't look all that bad bald, but still it was a shock and really hard on my self esteem. I didn't feel like a woman anymore. My eyebrows thinned and eventually fell out. Then my lashes. When my lashes came out that is when I was the most depressed. Mascara out of all cosmetics has always done the most for me. To this day, my lashes aren't as long and thick as they were before chemo.
In mid March, 2010, my mom had her second biopsy. I don't know if they told her more than she shared but she basically said it is cancer. I don't know anything else than that. Even then I didn't panic right away. Maybe she will go through treatment with me. Even if they can't cure it people have lived years in treatment. I just wanted some time. Some real time to be with her and say goodbye. But more than that, I needed time to instantly grow up and be responsible. I also was feeling some rather shameful feelings. I felt upstaged to a certain extent. I had cancer, and I couldn't be special and have that to myself. I was in a very weak state and here I now have to deal with the mortality of the most important person in my life. My dad and brother are very weak people and my mom was everyone's all in all.
It all came to a head around April 15th. That was D day. The day we would find out the worst. She had stage 3B Lung cancer. Statistically the 50% margin where 50% with that stage are alive and 50% are dead was 13 months. But that means 50 out of 100 are still alive. She could live years. I started the bargaining process with God. Give me 5 years please. I will get a job when chemo is over and I am stronger and I will figure things out. A lot can happen in 5 years. The rapture could happen...yes Lord, please rapture us before my mom dies. If that isn't in your plan please give me 3 years... 3 years would really help. This process went over and over in the months to come, but basically the main point was she was going to die, I was not. I so wanted it to be the other way around. I had to become strong even in the midst of something debilitating like chemotherapy. I was no longer the patient, even though I felt like it. I had to be the caregiver. That was not a role I wanted, but I was really all my mother had.

Friday, June 26, 2015

Chapter Six-surviving domestic violence

This is probably going to be the hardest chapter for me to write. I need to explain some things about my brother. He is borderline retarded. He had behavioral problems all throughout school and is like a 12 year old in a man's body. He was jealous when I was born because he had been the baby. We used to be really close when I was a kid. I saw a few violent outbursts over the years, but nothing like what I was going to go through.
Just an FYI, he had hit me before, usually one of those split second moments when you shock yourself and are so sorry afterwards. There was a time when he broke down the bedroom door to get something that belonged to him. He slapped my mother once and when I tried to get between them I was pushed into a glass mirror and it broke. We have lived in the same apartment for 16 years and I still am worried about what the landlady will say when she sees the destruction in this place.
But I never got seriously hurt in any of these altercations. Well, the day we found out about my mom's staging, the subject of Lissie got lots of play. I couldn't raise her. My mom didn't even want that for me, she wanted me to get out and have my own life. I was so sick and Daniel, my brother, kept saying, you don't have cancer anymore, you just want to be free of all of us. You are selfish, and the like. Then he exploded and started hitting me with a shoe over the head. All of the sudden, his hands were around my neck and I couldn't breathe.I think he pushed me into a wall and I hit my head, the details are fuzzy and it was over very quick. I managed to call out to my dad to call 911 and that shocked my brother to stop and he ran out of the house. What followed was he tried to kill himself, was taken by ambulance and got combative with cops, was arrested for that, but basically got away with it. My mom spent so much time consoling him and all I could think about was what about me? My head still hurt, I had a black and purple eye, I had to tell everyone I fell down the stairs. I did eventually go to the E.R. with that story and got checked out. I had a hairline skull fracture but nothing else. I went through a bad patch after that. I was afraid for my safety. I started packing up my possessions, trying to control my environment, and basically imploding in an anxiety ridden state. All I could do was worry. I cried, I had panic attacks, I think I went through a little PTSD, I don't know,  and I am still not totally back to normal, as reliving this as I write causes me to tear up. I have since forgiven my brother. As Jesus said, he knew not what he was doing. It is still hard to trust him, and I will talk more about that later, as this isn't the last time he would scare me beyond all reason.

Tuesday, May 26, 2015

Chapter Seven - Survival mode, anxiety at it's worst, and what's the worst that can happen

So last we saw me I was a victim of domestic violence with a seemingly well mother who had a time bomb in her body, and we didn't know what time it was set for. I was afraid of my brother, afraid of being homeless, afraid of my niece going into foster care, afraid of losing the only person who really and truly loved me the way I needed to be loved, afraid of letting everyone down, and feeling guilty for wanting to run as far as I could from everyone. Anxiety is the worst thing I have ever experienced. Depression was bearable in comparison. I was so tired. I felt like crap from chemo and more and more my mom needed me to take care of Lissie.Also, in April I crashed our car into the garage. (my dad told me I could back in and I was clear. Rule #1 never listen to my dad.) Not really a big deal in the long run but made me want to die. It was the catalyst though, to having me start driving school and I finally got my drivers license August 2010, which was the absolute most positive thing that helped me to that point. I think that was the time when I began to think, everyone has one thing they are afraid of, and they say I could never survive that, anything but that. I have had a lot of those moments from then til now, and I see that even if I think that will just kill me, it never really does.
May was a hard month. My mom got pneumonia and had to spend a week in the hospital. During that time, I had the worst chemotherapy round of them all. I was so sick, but I had to take care of an autistic child all by myself. To this day, I hate the barney video she watched over and over during that time. I had to figure out how to do laundry all by myself for the first time. That is pathetic sounding but you have to remember, my mom never taught me this stuff. I was so scared of doing something wrong and I cried constantly that whole week. If my mom had died that week I don't think I would have survived it without going into an institution or something. Around this time I started therapy and Welbutrin and it took a long time but I think it helped. From this point on, my mother had to be on 24/7 oxygen. I tried to control my anxiety by packing up posessions, because my thought process was I wasn't going to be able to do it myself when she died, and I needed her to help me know where everything was. I got rid of a lot of stuff. I wanted to travel light, I really thought I was going to be out on the street or something because I just was a bundle of nerves and was so scared and didn't think I could really do anything by myself.
I finished up chemo, and in July my mom went to the oncologist and decided not to pursue treatment. I am so thankful she got to see me get my driver's license. That august was the beginning of me finding my confidence. I could drive like an adult. I could do anything I set my mind to. I think it was a combination of my meds kicking in and my coping strategies, but whenever something overwhelmed me I found something I was capable of. I am capable of washing these dishes. I am capable of packing this box, etc. I just decided to do project after project. When something got me down, I researched and I figured it out. For several months I had been getting Lissie off to school, going for a walk and journaling, and just getting through the days. I kept saying when I felt better I was going to find a job and move out. I knew deep down that mamma had to die first, and that made things kind of difficult in my head. I didn't want her to die, but I hated the status quo. I didn't like to be entering the unknown, I wanted a plan, I became a control freak. I got upset if anything was sprung on me, and I really wanted a blueprint for the rest of my life. I went to this class about how your life is like this circle with wedges. When one is out of whack, the wheel won't roll and stuff like that. It was how to plan your life and fix things. I think it helped a little but I still was really messed up inside.
In September, my mom entered hospice. They were wonderful and it was really a necessity because doctor appointments were getting difficult for her. Those months with hospice were really hard for me. I didn't want to be around my mom because she wasn't my mom anymore. She smelled bad because the cancer made her sweat a lot. I couldn't hug her because it hurt her. Also, part of it was she couldn't do anything for me anymore. That sounds shallow and mean, it isn't that I didn't love her anymore because I couldn't get anything out of her, it is so much of our relationship was her taking care of me. I didn't know how to reverse that. I did my best but I felt so lost. And whenever I looked at her I felt so sad, because I couldn't do anything for her. Then in October, I had to have a hernia surgery. It was not a big deal and I healed quickly. My mother really made me mad with a comment, not again, you had your turn already what am I going to do without you? I was praying to die on that table. That is so selfish because my mom needed me. From that point on for most of the next 2 1/2 months or so, my sister, Theresa came over every day, helped me with the housework. got me through the surgery, and kept things going even when I was well  so I could take care of my mother, and helped take care of her daughter. I think that was what I needed for many reasons. I saw that I wasn't truly alone. My other sister, Tara, also was a big help and came over more often. I can't remember exactly when it happened, but I think the crossroads was when I talked to a social worker and she said I could always call cps to take over with Lissie, but once I crossed that road it would be difficult to go back, but I could just take one day at a time and try to raise her.

Sunday, April 26, 2015

Chapter Eight - November-the month I hate the most

I think I can honestly say without hesitation that November 2010 was the worst month of my life. There is a lot of specifics I can't really remember during this period but I will go over the basics. First of all, it was the last time my mother was well enough to pay bills and do basic business. She never left the house of her own accord after November 3rd. That is when she began the real process of dying. We had to set up a hospital bed at that point in the living room and she never went upstairs again.  Our days were basically spent dosing her with meds, helping her to the bathroom, and trying to give her what food and drink she could handle. I remember one day close to Thanksgiving, I needed her to sign a check and she couldn't manage to do it, and that is when I realized she was really going away. It got so bad for me, that even though I was still scared of what lay ahead, I was mentally ready to let go of her. I was already mourning the mother I lost. Her funny wit, her comforting presence, even arguing with her. Then came the Thanksgiving that made me hate that day. At some point in October, our secret about Daniel's violence was revealed to my sister Tara, because he basically cussed her out and let lose years of resentment. Never did it get physical and he was the one who removed himself from the house, but it did nothing to help my anxiety and I came clean about the real reason I went to the E.R. in April with my sister. I don't know if I was correct or not in that but I desperately needed to reach out to someone, not that it did a lot of good. Anyway, I hosted thanksgiving for the first time, which gave me a sense of pride and accomplishment. I was worn out from cooking and taking care of Lissie and I still don't completely know what set it off, but I think it had to do with Tara sounding bossy (which is second nature as the oldest sister anyway) she merely told everyone to turn their heads that my mom had to go to the bathroom (she had a portapotty in the living room) My brother really went off on my sister and told her to get out of the house. I had a huge mess in the kitchen still to clean up and people were still eating and there were the other nieces present. It never really got physical but the PTSD I talked about before really got to me, and I couldn't stop crying all night. What is worse, my mom was conscious and begged him to calm down which broke my heart. That was probably her last real conscious moment and I don't want to say I will never forgive him, because I have, but I would hate to go around with something like that on my conscience.
At that point I was motivated beyond all reason to get as far away from him as I could. I just wanted so badly to find a safe place. I think part of me wanted him to just kill me and get it over with, I do know that I blew it way out of proportion in my head. but I was really afraid of him. From that point for a few days, things were tense and my mom went into a coma. We slept over monday and tuesday night. Something told me we were very close. Aside from my brother, whom I still had a lot of negative feelings towards, I felt so close to my family at that time. At sometime between 5:15 and 5:20, my mom passed away. I want to say I felt her heart stop but I can't be positive. I was completely numb and went through the motions of what had to be done for the next few days.   Even to this day months later, it still doesn't feel real. I feel guilty sometimes for being able to go on so relatively well when she was the most important person and still is the most important person in my life. It almost seems like she was never here most of the time. I guess it has to be that way in order to cope. I still have things of hers to go through, it is still too fresh and raw at the moment. I read grief tends to peak at the third month and that makes a lot of sense because, as I will write about, a lot of practical matters had to be dealt with in the months following her death that only now, every once in a while I think, I need to ask momma, and she isn't here and it is like someone punched me in the stomach. Also, when I get overwhelmed and exhausted and everyone fails me in some way or another, my gut instinct is to go cry on her shoulder and she isn't there. I know I will see her again. I don't think God lets people that have passed on look down on us because I can't imagine it being a pleasant thing to look down on this world, and there are no tears in heaven, but I hope now and again he tells her how much I love her, how sorry I am that I took her for granted, that I am okay and doing pretty well all things considered, and that I look forward to seeing her again.

Thursday, March 26, 2015

Chapter Nine - December without Momma and becoming the person in charge

December was a strange month. It was mostly wrapped up in making Christmas happen for Lissie and if it wasn't for her we probably wouldn't have celebrated it. Fortunately I have a tradition of putting the tree up the day after Thanksgiving so I didn't have to go through all that during the aftermath. My mom wanted to donate her body to science because she didn't want us spending money on a "shell" but she didn't make arrangements beforehand so we had to have her cremated, and luckily my brother had been saving money and could afford the $600 to do it. I don't really remember a whole lot from that month except planning the memorial, and making the photo slideshow for it. I was very numb and had a lot of decisions and responsibilities thrust upon me. I still wanted to move out and was researching careers and trying to figure out what to do to make ends meet. I figured I just needed a part time job if Rebekah got her social security which she totally qualifies for. I wanted to pare down. I was and still am overwhelmed to a certain extent with a large apartment and everyone's stuff. However, a lot changed starting December 7th. I awoke suddenly in a lot of pain. The right side of my pelvis was throbbing and I could feel a knot there. I thought maybe I had another hernia because I have a couple family members who had hernias there. I went to the doctor and they said they would order a CT and if I started vomiting or the pain increased, I should go to the E.R. I went home and called the CT people and they said insurance had to approve the CT and it might be a couple weeks. Well I decided I was going to have vomiting and increased pain and go to the E.R. for my CT and the CT came back showing an enlarged lymph node. That night I had a dream that I had cancer in the lymph node. Now I don't believe in ESP or anything out there, but something makes me think my subconscious just knew something. Anyway, I researched reoccurrence  of cancer within the node and the info didn't sound good. That morning  I will never forget I thought to myself, if I wind up following in Momma's footsteps with the hospice and the whole 9 yards and dying, I probably won't get any help, they will all shut down into depression like they did with her, I will lay there and die ignored, because I don't have a me like my mom had. I don't have one person I can truly rely on for emotional support, and all. I got to thinking what do I want to do or whatever before I die. Mind you I didn't think I was dying but I just really was sensitive to my mortality. I always assumed I would be raptured before I died since I believe in the pre-trib rapture and there just seems to be a lot of evidence that this world can't go on much longer. Anyway, the only answer I could come up with is I want a cat. I really wished I could have had my cat that I grew up with during my previous bout with cancer, it would have been very theraputic and comforting. He died the summer of 2008 and I still remember my mother saying something had to move out or die before we would get another pet. I could actually laugh that she got her wish. See, I knew she was happy and free of pain in that wonderful place called heaven, that I mentioned earlier, so I could think of her the way she was before she got so sick. I nonchalantly  went downstairs that morning and said, we are getting a cat. No one argued with me! At that moment I realized, I have power. What I say goes! I eventually got my baby that I have now January 1st, but backing up I managed to get through the memorial December 14th and by the time I got to my follow up appointment after that E.R. visit, the lymph node had grown even more. Around Christmas I got very ill with some kind of cold but it had few symptoms I just felt totally drained. I had gone over to my niece's for Christmas and she had invited me and Lissie. It was a nightmare keeping Lissie out of trouble and I was absolutely miserable to a certain extent, and shortly after dinner I realized I had a fever. For 3 days or so I was really sick and I had very little help. It turned to bronchitis, and I lost my voice for a long time. I had a few well days before the bronchitis set in, and during this time Lissie broke out in a horrible rash. We got her to the doctor and he said it was probably an allergic reaction. we gave her Benedryl and it cleared up after after a few days. Then came that Bronchitis I was talking about. They had scheduled me for surgery January 20th to remove that node for biopsy. The day before when I was supposed to go in for pre-op, Lissie got the rash again. I didn't know what to do I was so sick and her mother and I got in a huge argument via e-mail because she was in bed with whatever I had supposedly, and wouldn't put her daughter first for once, and I didn't know who I could depend on, I was afraid to go under the knife not knowing if she would be taken care of and it was just so stressful. I ended up dosing her all through the night with benadryl and the rash never got up to her face and went away. To this day, it has never come back so I don't know what it was. So I went into surgery, I woke up and was told the cancer was back. I am not the type who cries in public but I started bawling and the nurses were hugging me. After what I had experienced with my sister, whom I still hadn't talked to, I was so scared for my little girl. Yes, in that moment she became truly mine. I knew this because I wasn't worried about myself. All my concern and worry was for her.
I thought they were going to keep me but I ended up being outpatient. I went home and told my family. Aside from my sister Tara, they all looked at me like I said the car needed washing.

Thursday, February 26, 2015

Chapter Ten coming to terms with reality

March 24th, 2011
I refused to call Theresa. She called me that afternoon and acted completely shocked by my news. I then found out that the majority of the emails that made me so mad were actually sent by her boyfriend. I was still mad at her not being there for me but I am learning that with my sister, it comes with the territory. When you are in charge, the only one you can completely depend on is yourself. I will be starting radiation and chemo treatments in the next couple weeks and will give an update then. Not a lot has happened since that surgery and now, but a lot has happened inside me. My brother and I are doing ok. For the time being, the panic when he raises his voice or something is lessening, and I honestly can say I love him again. I remind him when he gets loud that he is scaring me and I can't deal with any more trouble, and he checks himself. I am trying to recognize that he is limited in what he can do for me, but he does help me with Lissie sometimes, and I think as I enter treatment, he will step up and be there for me. I am no longer afraid of him. I am in God's hands.
Theresa had a health scare Monday, She took too many pills we think. She blames it on seeing Lissie's dad and having a psychotic break or seizure or something. It is funny, I can accept that she is a total liar or telling the truth and I don't really care. I always forgive and forget but I no longer put my self out there to be hurt. She can do what she wants to do and I will do what I have to do. Trust once broken isn't easily mended on either accounts. I am learning to be strong. I love to drive and it makes me feel so free, independent, and brave. I still have my moments. Sometimes I feel so incredibly lonely and overburdened. Taking care of two mentally ill people and a disabled child can be very hard. Sometimes I enjoy it, like when I went shopping for new clothes for my dad and brother, or when Lissie says something that warms my heart. I am only human for wishing I could run away once in a while. I guess the true test of maturity, character, and responsibility is that I don't. I think Momma would be proud. Sometimes in weak moments I wish I could go to sleep and not wake up. I ask God to forgive me for such thoughts and realize when I am thinking like that, I probably am just tired and need a break. Things always look better after a good night's sleep.
I don't know the future when it comes to my life. My health is never good, but sometimes it is better than others. Lately I have been down in my back, my arthritis acts up now and then, and of course I always wonder if the cancer is somewhere else, but so far the cancer doesn't appear to have spread any further and all the tumor markers are very low, but I really don't think too much about dying beyond being so exhausted at times the rapture sounds mighty nice. I take each day as it comes.
There are days I feel like all I do is take care of people without anyone taking care of me but I remind myself that God is taking care of me. Maybe I can't always feel him, but I know I am in his hands. I also know that even if I am unappreciated, he sees and will reward his servants. I do sometimes feel like I am disappearing. Like all I am is a housekeeper and caregiver. I have SSI now so at least financially we are holding on. It is sad that I wasted so much time that I could have spent with Momma worrying about finances. Consider the lilies...I suppose one of these days God will teach me to not worry, cast my cares on him and trust he has it under control. It can be hard walking by faith and not by sight.
I still miss Momma, but not because I need her. I wish I could have figured all this out before she died. I guess it was one of those things I had to learn for myself.
The one thing I really need help on is as a result of isolation and whatnot, I can't open up to people. Whenever I do, I don't get anything back. I feel numb. I can't seem to feel love or anything. I guess my fear is if I do admit I need help, people will think me too needy and refuse which will hurt, or I will somehow lose my newly found strength and independence and revert to the co-dependent behaviors. I dream of a miracle and I will get that husband who loves me, and the kids and the whole 9 yards, but so much has to happen before that. I am healing right now in many ways. So for me, just getting through each day is a victory. But as I said before, I feel so cut off from normal society. I have trouble being close to people and feeling that connection. That is why I started this blog. Even if we never communicate in any other way. I like to know someone reads this, and cares enough to drop a word of encouragement, pray for me, and maybe hold my virtual hand through these trials I am facing.
At least I have recorded this journey I have taken, from girlhood to womanhood. It took a long time to grow up. I think adulthood is somewhat overrated. Youth is wasted on the young. Regret is one of the saddest words in the english dictionary. I can't go back, I must go forward, and I pray God will give me a break before the next big test of my life happens.
One thing is for sure, I am truly my mother's daughter. And for now, that is enough.