Journal Entry #1 - November 26, 2014

November 26, 2014

I’m only journaling because my therapist believes that it will help me feel some emotion.

Emotions scare me.

If I FEEL, I may not be able to stop. How am I going to live if I can’t stop feeling terrible (not only physically, but mentally). I’ve been to that place before. It wasn’t pretty. I lost almost everything.

I’ve accepted the fact that I am never going to be who I wanted to be. It sucks.

But what am I going to do? Cry all the time? NO. I am not going to be that girl. I can’t be. I have to worry about my children. I don’t want them to see me as weak. I want them to see that even with the pain that I deal with everyday, I still function. I function shitty, but I function. I get up, I go to work, I deal. It may not be the best dealing in the world, but it is dealing, nonetheless.

I want more. I want to be the wonderful wife and mother I have always wanted to be. But if I let myself get upset because I can’t be those things, where does it stop?

How far will it go? Will I end up in the nuthouse? Because I feel like I could go there and never come out. They wouldn’t let me out if they knew all of the thoughts that go through my head. I don’t have time for the nuthouse.

I don’t have time for emotions because they will not go away if I let them come.

Sometimes, like right now, I want to kick myself for not letting them dope me up.

Some mornings, like this morning, I want to kick myself for not just giving up and getting disability. Getting up and going to work is hard for a normal person (let alone a person in constant pain).

“One day, this pain is all going to go away.” Its a thought that I wish would make sense to me. I wish it was applicable in my case. But it isn’t. This nightmare will never end for me and I can’t image that I will ever get used to it. Its not something that someone CAN get used to.

My real hopes for my life are:

• That I learn to cope with the pain more and more everyday.
• That my family will realize that this is not some made up condition and that I am NOT a hypochondriac like my great-great-grandmother was.
• That my children will see me as a strong woman and not the weak, frustrated, girl I see in the mirror.
• That my husband will stick around in a sex-starved, miserable marriage with a woman who really does love him more than life, yet still, somehow, be as happy as I want him to be.
• That I will continue to force myself to get up and go to work at a job that I absolutely adore. That I will remain the best at what I do and only get better.
• That my friends will still be my friends through the missed calls, ignored text messages, skipped birthday parties and cancelled meetings.

Those hopes, though ridiculous and very unlikely, are what keeps me holding on. They’re why I force myself to get up, get ready and go to work everyday. They’re why I refuse the hard pain meds. They’re why I try my hardest to be there for my friends and family when I get the rare moments of a level 6 pain. They’re why I keep myself from feeling the emotions that scare me (the emotions that would put me in the nuthouse).

One day, this is all going to make sense. I have to start telling myself that I am a warrior and even though I feel defeated, I am still fighting. I can do this. I AM doing this.

Prayers Please!

I asked for prayers at church today. I'm not usually one to go to the front of the congregation like that but I am feeling a little desperate. I am having a presacral neurectomy in two days and if it doesn't work, my doctor will refer me to pain management. I refuse to take pain medication every day for the rest of my life. I would rather deal with the pain.
I am telling myself that this surgery IS going to work. I am going to wake up after my surgery and think that I have died and gone to Heaven. It is so exciting to think about a life with no pain (or even just a normal amount of pain). I can't remember what it was like before chronic pelvic pain. I understand that even if this surgery does work, I will still have vulvodynia, but I truly believe that I can handle that. It is the pelvic pain that makes me feel like I am crazy....crazy AND lazy. I am SO tired of having to lay around all of the time because I am in pain. I know that my family has to be tired of it.
I am SO lucky to have such an amazing and understanding family. We had to move in with my mom, grandparents, brother and great-grandmother because my health got so bad. I know that it isn't the "normal" or "ideal" living situation, and sometimes we drive each other crazy, but honestly, I am so glad that we are here. We have no plans to move out. This is our home and we will live here as long as the Lord allows. Even if my health gets better, we will stay. I feel like this is where we are supposed to be.
I know that I said that I am telling myself that this surgery is going to work. But if it doesn't work...I am terrified that I am going to break in two. If you pray, please pray for me. If you don't pray, please send me some positive vibes, or thoughts or whatever. I need all of the help that I can get. This HAS to work. This HAS to take away my pain. Right? Yes, right.
I know that this is my first post in a while.. I really have no excuses. My brother was here for a little over a week, so I haven't really been on the computer much, but that was only for a week. I promise that I will try to get better at posting. I will try to post about more topics that others can relate to and would enjoy to read. Starting out, I will sort of use this like a journal that I can just jot down my feelings and thoughts for others to read and attempt to understand. If you think of any topics that you want to hear my thoughts on, or have any questions for me, please let me know and I will try to post about it.
xoxo - Julie

My Beliefs.

My faith plays a huge part in my life. I am a very passionate woman. I am passionate about Jesus Christ. I am passionate about human rights. I am passionate about sexual health. I am passionate about children. I am passionate about my family. I am passionate about my job.

I truly believe that God has blessed me beyond all compare. He gave me the best family, husband and children that anyone could ever ask for. My husband and my children are all healthy. I would gladly live in a box if it meant that my husband and children could be healthy. The rest of my family is relatively healthy. We don't starve. There are several people who would make sure that we have food and a roof over our head. My husband and I have great jobs and work with wonderful people. My children go to one of the top schools in Georgia. I still have not only all but one of my grandparents, but I also have a great-grandmother who is still around.

I am glad that I have this pain. I would rather have all of the things/people I mentioned above and have this pain for the rest of my life than to lose any of the above. I would rather be the one who has to deal with this than my family have to deal with one ounce of the physical and emotional pain that I have.

I know that God has given me this blessing for a reason beyond my understanding, but I finally feel like He has given me a hint as to what he has in store for me. I have prayed about it, thought about it, talked about it, and I realized that He wants me to help others through what I have been through for the past seven  years. I have always liked to research pelvic conditions. I have several that cause my chronic pelvic pain, but I have also researched other diseases just so that I am aware for others who I come in contact with.

When reading my blog, I will be posting several things about my faith in God. However, one of the things that I mentioned above is that I am passionate about human rights. I say that I am mostly liberal, but I do have some conservatives values (after all, I was raised conservative). I believe that every person on earth should have the right to love who they want to love and have the same rights as any other couple, but I also believe that it should be called a "civil union" instead of "marriage". After all, marriage is a christian concept. I believe in the right to bear arms, but I also believe that huge clips for civilians is a little much. I believe that a woman should have the RIGHT to have an abortion, but I would never have one myself. There are millions of children in the world who are either in foster care, or are severely abused or neglected. I believe that the war on drugs is ridiculous. There are so many people taking up space in prison because they decided that they didn't care about their bodies. Unless it was a violent or civil crime against someone else, drug addicts should be given the option to go to rehabilitation. I believe that if it is a small amount of drugs and they're not addicted, we should leave them alone. I think that marijuana is medicine. It is herbal and good for you. There have been no documented deaths because of marijuana. It is much safer than alcohol or even processed foods. I honestly believe that if marijuana were legal, there would be less people addicted to pills (again, bad for you). It would be a good medicine for people with chronic pelvic pain (or any type of chronic pain).

You may wonder why the heck I am telling you all of this. I want you to know more about me. I am hoping that we will become great friends through this blog. My email address and my phone number is on my profile. While these are the things that I believe in, my family, my husband and my friends are pretty conservative. I think that diet has a lot to do with the reason some of us are in so much pain. I think that we need to completely cut processed foods out of our diets (though it is very hard to do for my family right now because our budget doesn't allow for it.One day, hopefully soon, we can re-do our budget to allow for a better diet.

Another thing that I am passionate about is sex. It is nearly impossible for someone with all of the diseases that I have, it is nearly impossible to have sex with my husband. It drives me crazy when people who CAN have sex, don't. I just can't see why they wouldn't (if they're married). I would give almost anything if I could be intimate with my husband that way. I believe in helping women learn more about their sexual health.

I shared this picture with you because I truly believe that God has given me the strength to endure the pain this far, I have benefited from it tremendously, and I have become more devoted to God in the process. Please remember to share my blog! I know that there isn't much on here yet, but I have just started. I have so many plans for this blog already. I pray that God gives me the patience and wisdom to sit down and type what I need to type to help others like I want to. If you have any questions of me or think of any topics that you would like for me to write about, please feel free to ask any time.

A New Journey

I am writing this blog at five minutes until midnight (and I have to wake up at 5:30 am). No, I'm not crazy, I am just in pain. I am learning to control my pain, but it is worse at night when I've been up and about all day. This morning, I had a doctor's appointment at 8:00 a.m. to get an instillation (medication in my bladder) and talk to him about a presacral neurectomy (surgery to remove the nerves that send the pain signals from my central pelvic area to the brain). We are hoping that this surgery will help relieve some of my pain. Usually the appointments only last for about thirty minutes, so I assumed that I would make it to my physical therapy appointment at 9:00 a.m. just fine. Well, you know what they say about assuming... My doctor (Dr. Robert S. Furr, who I absolutely adore by the way) was so busy that it was almost 10:00 before I left his office. Thankfully, my physical therapist (Kaitlen, again, adored by me) fit me into her schedule at 2 o'clock this afternoon. She said that since I was post op from a perenial repair, I needed to be seen and couldn't afford to miss an appointment at this point in my therapy.
I have Chronic Pelvic Pain. My conditions are Interstitial Cystitis, Vulvodynia, Irritable Bowel Syndrome with Chronic Constipation, Pelvic Floor Dysfunction, and I had Endometriosis until I had a partial hysterectomy in July of 2013. There is no way to describe the pain that I feel on a daily basis. I have to limit my physical activity (even the way I sit). If I have a day when I need to get things done, I have to make sure that I can rest (lie down) for at least 8+ hours. It has taken a lot of research, doctor's visits, medical tests, and procedures to finally understand how I need to cope with this pain.
Kaitlen (my physical therapist) and I were talking today about starting a support group for people with Chronic Pelvic Pain in the Chattanooga (TN) area. She told me that she would be willing to help me with it. I am so excited that I am about to burst. We are hoping that we can get a room at the hospital that she works at for the support group to meet in. I have been doing research (you will quickly learn that I do a LOT of research) about starting support groups and I decided that I would also start a blog about my journey. It has been one LONG, painful journey. I have always known that God is using me through this madness and I feel like I have finally figured out a clue as to what he is using me for. I pray that he will lead me to help others who are facing the same type of issues as I am. I know that there are people out there who are going through something much harder than I am going through, but this seems like hell most days.
I am excited for this blog to grow and I hope to be a shoulder for others to lean on when they feel like the pain or the psychological effects are too much to bear. Since I will only get five hours of sleep if I fall asleep right now, I will make this first post a short one. Please feel free to email me at JulieHawkins581@gmail.com
Goodnight!
Jewls