Just checking in...

Hi all. I am so very sorry that I have not posted anything in a few months. I really have so much to say but no energy to do it. It also is hard for me to type a lot because I have so much swelling in every part of my body. I have been thinking about trying to post a video instead of typing. I really do not know how but I am sure I can figure it out. And if I can not figure it out I know I can always depend on my favorite sister to help me out. She is really good at figuring the whole computer thing out. ;)  Anyways, I just wanted to let everyone know that I am still alive. And I think that's all I am going to say right now. I will post the Vlog as soon as I get it made. I hope everyone had great holidays and I will blog at you all later. <3 Kimmy

My anger and the 5 stages of grieving ...

     I wish I could be one of those people that smiles everyday no matter what is happening in their lives. I spend every day trying to force myself to be happy, and for the most part I pull it off well. But the truth is that I am mad, and sad, and most of the time I feel very alone. I have lost so much thanks to these diseases, my career, my health, my looks, most of my friends, and my sanity. Its getting to the point that the anger is turning into depression. Sometimes I do not even recognize myself  (Inside or out). Before I became sick I was hardly ever upset by small things. I didn't mind standing in line at stores (I usually let people cut) or driving in traffic. I never sweated the small stuff and I could always find fun no matter where I was. I really liked the woman I had become. Now I can hardly get out of bed, I have gained 60 pounds, I have a rash all over me, Swelling in every joint, bald spots, my scalp is covered with flakes, and thanks to the Ankylosing Spondylitis I cant stand up straight and I walk like I just rode King Kong's horse, and so much more. I also beat myself up every day because I cant be the Mother, sister, and friend that I want to be. And to top all that off, I went from making 50,000 a year to living on SSD bringing in $1500 a month. I can barely afford the rent much less anything extra that my kids might need. I was so proud of what I had accomplished and I was so excited about my future. Then it was all ripped away and replaced with chronic pain and sickness all day everyday. So, with all that being said, I cant help but feel angry and depressed. So I decided that my kids and I needed to start going to a counselor, to help deal with some of the emotional pain that this disease has caused in our lives. He has been amazing and he has really helped me to see that I am not crazy and it is normal for a person that has been through all that I have to have some level of anger and depression.

     I now realize is that I am going through the 5 stages of grief. I know that most people think that grieving is only for when you lose a loved one through death but the 5 steps can also help us in many parts of our lives.

The 5 steps of grief are:
1) Denial and Isolation.
2) Anger.
3) Bargaining.
4) Depression.
5) Acceptance.

     Realizing where you are in these steps can help you to see where you are in your emotional healing, and where you want to be. I can think of many times that these stages apply to my life like deaths of loved ones, my divorces, and mostly these diseases. Right now I am flipping back and forth through 1 and 2. Sometimes I still feel like it may be all in my head and then I see the swelling and rashes and the anger sets in. I do not know how long it is going to take to get to number 5 but I am happy that I have a goal to get to now. So to all of you that are going through any kind of loss just remember that you are not alone. If you have the oprotunity to talk to a counselor, take it. They are there to help you. You just have to open your heart and let them do what they do. Gentle hugs and many prayers to everyone. -Kimmy

Gettin down with the SICKNESS…

         I always considered myself to be the person that was “NEVER SICK”.  You know, that person that is so punctual that if they do not show exactly when they say they are going to be somewhere, everyone assumes they must be in jail or the morgue. I even had to wear a cast boot for 6 months and insisted on working anyways. My boss and doctors had to force me to take time off to heal my foot. Little did I know, that was just the beginning of a roller coaster that has broken brakes, and just won’t stop rolling. I told someone today that it was like being on that Graviton carnival ride. The faster it goes, the sicker you feel, but still you can’t get off.

     I guess I should go back to the beginning so I can really point out how sometimes the smallest pieces can eventually complete the biggest puzzle. In March of 1976, I was born the picture of perfect health. When I was about a month old I became very sick and had to be hospitalized. Of course I do not remember any of this, but this is the story I was always told. My Mother and Father split up when I was a month old and my sister was only 13 months older than me, and my Mother was having a rough time handling the stress of having a small toddler and a newborn. My tiny body was starving for attention and I became very ill because of it. I spent a couple of weeks in the hospital being 'Nourished" and was sent home again with a clean bill of health. Things were good until I was around 4, when one day my Grammy was drying me off after a bath and noticed that my lower abdomen was very swollen. She took me to the doctor, and it turned out that I had a double hernia that required immediate surgery. It also turns out that it was hereditary, both my Mom and Dad had the same surgery when they were young. It’s funny though, my long term memory is terrible, but I can remember so many parts of that time so clearly. I can even vividly remember the day My Grammy was drying me off and noticed the swelling. Other than that, aside from chronic nosebleeds and ear infections, my childhood was pretty much uneventful.

     By the time I was 20 I had 3 live births, 2 miscarriages, a tubal ligation, and a very painful uterus infection that landed me back in the hospital after my 3rd baby. And except from my period being heavier with worse cramps, pain during intercourse, and a few kidney infections, my life was very good health wise until I was 30. I was working more than full time and had a career that I was so proud to say I had. I started at the bottom and climbed my up as fast as I could. I prided myself in being an over achiever and I loved the “HYPER” side of me. At 24 I had an abnormal pap smear. I had a colposcopy, but due to an issue with my insurance, I could not afford to go back for the results. They called me a couple of times, but I still was never able to find out what the results were. 6 years later, when I was 30, the pain and bleeding during intercourse was worse than ever, but still, I just ignored it and tried to convince myself it was normal. F.Y.I. ladies that are reading this: pain and bleeding during intercourse is not normal. I was also having a lot of issues going to the bathroom. (#2)J  Every time I had to go it was like having shards of glass moving through my intestines. Anyways, back to 30, I was working as a General Manager for a KFC/LJS. I suddenly started having pain in my foot and then a bump. I knew I hadn't injured myself but the doctors insisted that I must have fractured it at work. They did x-ray after x-ray that showed nothing, but still they insisted that it must be a stress fracture. Well, their the doctors, and they should know what they are talking about. Right? Well, I ended up wearing a cast boot, while still working, for over 6 months until the doctor forced me to take 4 weeks in bed. Nothing helped heal my foot. Then my other foot started to do the same thing, only now both of my feet hurt everywhere and I was getting all kinds of weird swelling. Doctor after doctor, test after test, but still no one could understand why my feet so messed up. I knew in my heart that something was seriously wrong but no one seemed to believe me. It was during that time that I decided to see the gynecologist for a checkup. After endless amounts of tests and exploratory surgery, they decided that I had Adenomyosis and Cervical Cancer, and so on 6-28-2008 I had a hysterectomy.  The doctor said that my uterus was the size of a large grapefruit and was the most lumpy and hard one that he had ever seen. I also had a small mass around my cervix that was cancerous and cysts all over both ovaries. They sent my cervix, uterus, and tubes to the lab after the surgery and it turned out that the cancer had spread thru most of my uterus, and if they would have waited even one more month it would have been inoperable and I would have had to go thru chemo or radiation. (Praise God) Luckily I was able to keep my ovaries so I don’t have to take hormone pills. And so I thought the drama was over. I went back to work at a Taco bell as a General Manager and started working my way back up the food chain.
     In august of 2009, I decided to make some real changes in my life. I stopped smoking,  started eating healthier, and exercised daily. I was finally fitting back into a size 5, which I hadn't been since before the cancer drama. One day I got what I thought was the flu, and that’s when my auto immune nightmare began.  Like I said in the beginning, I NEVER got sick. So when I started running fever and having body pain, I just figured it was a virus that was going around. When it didn't go away I went to the doctor and got some antibiotics, but a couple of days after finishing them I was sick again. This soon became the pattern of my everyday life. I was in the doctor’s office every other week for about 5 months with “Flu-Like” symptoms.
      In between all the doctor visits I started having all these crazy symptoms. Hair loss, sores on my scalp, body and mouth ulcers, bumps from head to toe, butterfly rash on face, weight gain, extreme joint pain and swelling, muscle pain, extreme fatigue, sun sensitivity, and the list goes on. The Doctor decided to run a complete blood panel on me, including thyroid levels, and he did a Mono test. Ah ha, BINGO, my thyroid was low, so the doctor says “Take this pill every day and come back in 4 weeks”. Sounded easy enough, and so I did, and a month later my levels were back on track, but the pain and sickness was worse than ever, I couldn't sleep, eat, shower, walk, and forget about work. I had to work, every day, I had no choice. I had kids to support, but I could barely make it through a shower much less work the entire day. I arrived late every day and I left early every day. It was like living nonstop with the worst flu every single day. My body hurt so bad I couldn't handle even the slightest touch, and I couldn't wear my bra or anything else that was tight. I would get to work and try to do my job, but I just couldn't, I ended up in the office or in my vehicle asleep every day. My body was falling apart, my store was falling apart, and my life was falling apart.
     On Christmas day 2009 I drove my kids to their dad’s home which was 4 hours away. By the time I got there my knees were so tight that I could barely move them. When I got to his Apartment and changed into shorts, I realized my right knee had doubled in size. That was the day I knew something was seriously wrong with me. When I got back home from dropping off my kids, my sister and I decided to play internet doctor and made a list of every symptom I had. According to every computer site on the internet I had LUPUS. Of course, I didn’t believe any of it because there was no way that I could have a disease that I knew nothing about. I knew that I needed to talk to my doctor about everything so the day after Christmas I went in. Although he didn’t say it, he knew something serious was going on, that’s when he sent me to my first Rheumatologist. 

     So here is where the “Long story short” part comes in. After 2 and a half years of doctors, hospitals, lawyers, disability, and extreme sickness, I am still fighting the battle of (or should I say “for”) my life. Not only have I had to fight just to survive this nasty disease but I have had to fight insurance companies, lawyers, social security, and especially DOCTORS. I have been seriously mistreated and ignored by many doctors. So far I have been diagnosed with Lupus, Ankylosing Spondylitis, Fibromyalgia, Chronic Fatigue, Hypothyroidism, Degenerative Disc and Joint Disease, Osteoarthritis, Epstein Barr, Hypertension and Trigeminal Neuralgia. I was however very blessed to get my social security disability after only 4 months, but I am still fighting Cigna for the long term disability that I paid for out of my check every week. And even though I was able to get my social security, I am not eligible for Medicare until next August. (You have to be on SSD for 24 months to qualify) So I lay here in bed every day with no way to get to the treatment that my body so desperately needs, just praying every day that my body doesn’t give out before August and trying to provide my kids with the closest thing to a normal life that I possibly can.

     As with everyone that rides the auto immune rollercoaster, there is so much more to my story. I wanted to make sure that my first 2 blogs covered my life until the sickness so that everyone would be able to see what made me the person I am today. I also hope to really be able to share the truth about these diseases and how they can ruin the life of the person with them and the lives of all the people around them. And hopefully, in time, I will be able to share my walk into that thing that they call "REMISSION" that I have heard so much about.And now that that the "life story" boring part is all said, done, and out of the way, we can have some fun. Thank you to everyone that takes the time to get to know me thru this blog. Even if I can help one person it will be all worth it to me. Please comment or email me if you all need anything. Gentle hugs and many prayers to everyone. -Kimmy  

         

In the beginning...

     Hi, my name is Kim and I have never "Blogged" before, so I hope I am doing this right. I have decided to start this blog to try to reach out to others whom are in the same situation that I am. I want to provide support while being supported. I want to educate while being educated. And mostly I want to join the mass amounts of people that are living with these diseases while still having to try and have a fulfilling, somewhat normal life. I want this blog to be a place that people can come to and feel safe. I want this to be a place of kindness and truth. I want to be able to post without being judged. And at the same time, I want people to be able to come here and talk without being judged. And I will try to be as honest with my life and feelings as possible.

    My life in a nutshell (up till the sickness): I am a 35 year old mother with 3 teenagers. I always considered myself to be a caring, fun loving, and hardworking person. I started having kids very young. By the time I was 20, I had 3 babies and 2 miscarriages. I married the father of my children at 15 and by 21 we were divorced. We had a very immature marriage and it ended rough. Even though times were tough with us and ended on a bad note, we have put our hard feelings aside and become friends for the happiness of our kids. I was married again about 4 years later. I married a childhood friend that had just come out of a relationship and was not ready to be involved again. He became a severe alcoholic and got more violent as every year passed. We were together when I was ages 24 to 30. Our relationship was very violent and I was in counseling for 8 months afterwards for battered wife syndrome. It was not all bad, and we shared a lot of loving moments, but the abuse far outweighed the good. He had 4 kids that I loved so much. I still talk to them and I love them just like my own. I am really blessed that their Mother and I were able to become friends and I can still be close to all of them. And then there was the one man that I thought was my soul mate. There is so much to this story that I could probably write a short book, so I am just going to give you the basics.  About 2 or 3 weeks after I left my 2^nd husband I ran into an old friend. We started talking on the phone daily for about 2 months when I decided to see if he wanted to hang out. Well, that was it. I fell so deeply in love with him and I thought we would be together forever. In my heart I was building a life for him and I, and all of our kids. (He had 5) We were even looking for our first house together. Little did I know he was also living a life with his ex.  According to him, he was torn between his kids or me, so I decided to make him leave so he didn’t have to be confused anymore. I had no idea how hard it was going to be to live life without him. I was so extremely heart broken. It has been about 3 years and I can still imagine the smell of his skin. I had no idea at that time the turn my life was going to take. It was around this time that I started becoming sick. There is a lot more to the story and to my life but that was then and this is now.  And I am choosing to focus on the now and what my future will be.

      Thank you to everyone that takes the time to read this. I feel like Lupus and other life sucking autoimmune illnesses are just completely ignored and the people that have them are very mistreated by people simply because they cannot understand. But if we all ban together we can fight this killer wolf inside us and hopefully make the future better for the next generation of fellow auto immune survivors. Gentle hugs and many prayers to everyone.  -Kimmy