Update 2016

I have not written is some time…….. Its not that I had forgotten but several challenges have honestly made me forget about the blog. I want to thank my friends that have made it possible to get through things. Life has been bitter and cruel. My Crohns is in remission, unfortunately I have had numerous new symptoms. Memory, emotional and mental changes. Currently I am being tested for Huntington’s disease, ms and other neurological disorders.

Its been a rough few years, I lost my dad, as he passed away, my marriage is in peril,dealt with abuse and my health conditions are very difficult.

 

We moved to southern California, which has generally been good for me, and I love working as a nutritionist. I also went back to school so I can be a a registered Dietitian and would like to work in hospitals. I am busy to say the least. All last year I was on a quest to figure out how to rebuild my life and figure out who I am and what path I should take. I feel good about going back to school to gain even more knowledge. I also work with the DBSA San Diego chapter(dbsasandiego.org).

 

Hopefully I can be better at updating the blog in the future.

 

I will tell you my life and who I am has changed drastically, which some people are not able to handle. I never give up, even when I really want to. Its a constant internal struggle for me to deal with.

 

Th elections are very important to me, which is not good for my anxiety, but I have never seen an election like this one. I can tell you that I am absolutely anti Trump! For now I wont go any further, because this post would be hundreds of pages long.

 

The only way out is through!

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2015 Thoughts……..

This year I have been through a lot. I catch myself saying that every year. There has not been a post in a while because 2014 I was so sick I could do nothing. This year brought new challenges to light. In February 2015 I was diagnosed with a 2nd autoimmune disease called spondylosis  ( and RA type of arthritis that attacks the spine). Also with the passing of my father and moving to California. I have been in and out of the hospital but mathematically speaking less than last year. Relationships in my life have suffered not only from last years torture but also because other people in my family had also been affected.

 

I thought last year had tested me as a person. How much could I take before I broke….. I took a lot and on Nov. 21, 2014 I decided the world did not need me anymore and I was going to die anyway. For the first time in my life I tried to commit suicide. I survived, hence I am writing this….. but survived is all I have been doing. Working my way back from a mental breakdown has not been easy. But yet again I would be tested…… In ways I never thought I could be. The love of my life and of 19 years physically abused me. I had become too much to take. I was a burden to my husband and my kids. Everything was taken from me. My health, my family, my job, my worth as a person. Being hurt so bad you dont think you can ever recover. Have I? No, it is still a long hard road in which I cant control.

 

This is an update, I hope to write more frequently.

 

Bless all you during the holiday season and especially ones who deal with health problems as we are all soldiers.

 

 

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Harping On The Past

I have a sorted relationship with my parents. A few years ago I helped my mom recover from drug addiction and also helped both of my parents with their failing financial situation. In turn they moved closer to where we lived to be closer to their grandson. Things began a slow decline. My dads health was also on the decline. He smoked for 42 years and as a result had COPD and went on oxygen 24/7. He also has type 1 diabetes. He was eventually laid off and went of disability. I read something recently that said ” Don’t expect everyone to understand your journey, especially if they have never walked your path. ” I guess I have to remember that also in my dads case. Last year and after years of suffering symptoms of this disease and being at the edge of being really sick and through miles of tests, I was finally diagnosed with Crohns. I was in the hospital almost dead and had surgery. I am hurt my dad did not even call me to see how I was. It took me a few weeks to recover and yet no call. I am wrong to be hurt? I am his kid…….I would think he would crawl to his child if he had to. Clearly I am not a priority. I have two boys and I can tell you with 100% accuracy if I was almost dead I would demand my husband pick me up and take me to my kid if they needed me! That is who I am.

I recently had a conversation with my dad about this and it came out, his response was, well your mother told me how you were….. I was like you know what, never mind you dont get it and NEVER will. This is also the same father that thinks my birthday is June 22nd and NO it is the 24th. What I cant understand is that I was sick with this crap when I was a kid and this is the same guy that would bring me a happy meal trying to get me to eat desperate after I did not eat for 4 days and vomiting. Where is that dad now? I am an adult but still would like to be someone’s kid. I still need someone when I am in need. I lean on my husband for that and that in turn changes our relationship. It has suffered because I am no longer the sexy wife, I am the sick wife he has watched turned into a ghoul that will die slowly before his eyes. He has seen me so sick I am almost dead. My parents at their house not seeing any of it.

 

Crohns is hard not only physically, but mentally I can’t stress it enough. It take a lifetime toll. I have been dealing with this since I was 8. Before I was diagnosed I had hope whatever this was that was making me sick could be cured, that will not be so now. I have no choice but to live and survive the nightmare. Crohns has taken bits of my life and family.

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Uceris

Last week I was at the GI doctor and he told me about a variation of Budesonide that may be a good option for me. It is usually for UC treatment, but since I have Crohns Colitis it may work pretty good at least in Theory. I admit, I am interested. Anything to get relief in tough times. However it got me to thinking it is a bandage solution and there is still no cure for this beast inside.

So it  specifically targets the colon. It is a medicine used to treat active, mild to moderate ulcerative colitis. It’s for people experiencing UC symptoms or a flare-up who are trying to reach remission, a period of time without symptoms.

UCERIS is a different kind of steroid designed specifically to treat UC. It decreases inflammation throughout the colon with a targeted delivery of medicine throughout the full length of the colon, where the disease is located. UCERIS is a single pill taken once a day by mouth for up to 8 weeks or longer if needed.

IBD causes inflammation, or areas of redness and swelling, in the colon. This disturbance produces the symptoms of UC. As it helps to heal the lining of the colon, UCERIS decreases the severity of inflammation, thereby helping to eliminate UC symptoms.

What happens after taking UCERIS? Unlike typical steroids, which act on the whole body, UCERIS targets the area where the disease is located. The medicine travels through the digestive system and stays intact until it reaches the colon. Once it dissolves, UCERIS forms a type of gel and slowly releases medicine to the full length of the colon.

how-uceris-works

 

Good option? Maybe

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Here I Sit Among The Sick

For years I knew something was wrong with me, I just did not have a name for it and it that there was some hope that it would be found and cured! If you would have told me years ago that I would be sitting in a mass treatment room with others in floral pattern recliners while lethal doses of medications dripped into the veins of the sick, I would have told you to stop smoking the cheap stuff! However here I am. Last Friday was my 2nd Iron infusing because I am deficient due to the Crohns. This trip I overheard two people talking. I sat there staring at the IV in my arm and watching the brown shit drip in my veins….

 

The two people were talking about their Pancreatic cancer. Now I do feel plenty of sympathy  dont get me wrong. Cancer is no joke! I guess the key points that caught my attention were the fact that they bragged about craving cheeseburgers after their treatments. Now I have crohns and anytime I eat it is 50/50 if I get sick or how my body wants to process the incoming food. Now if I eat a cheeseburger I am for sure asking for pain and to be sick. They acted like it was no big deal, but to me it is a huge deal. They also talked about the fact the suffered major dehydration, well I suffer that on a regular basis. In addition they described how terrible it was to have surgery ..um ok CHECK me too! Abdominal surgery feels like your guts are falling out!  Also the fact they had to have an endoscopy and how terrible that was to have. I sat there thinking maybe they wanted some cheese with the wine….  I was thinking about how many scopes I have had and how strong I have had to be. How hard it is to handle my lack of my digestion! Speaking of that I dont know if I have gotten more bitter or less tolerant  but I try not to take the pity route. I guess along with food, I can no longer digest whine either…..

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Another Trip To The GI This Week

This Thursday I will be heading to the GI, gosh I see him alot! I have been going through a rough patch, I hope this is not the continuation of this stupid flare I seem to have had since last Aug! I was just on Entocort 6 weeks ago, but my meds are not seeming to work, so I will have to discuss options with him…. For just once I would like to go into remission and stay there for a long while and not have to deal with this for a bit 🙂 that would be nice!

I got my Iron Infusion last Friday, might have had a reaction to it because my feet swelled up so I am hoping it was a fluke…..

IV

feet

 

Well here is hoping things will get “figured out”………………………………………

 

 

 

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World IBD Day

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Today is World IBD Day! What does that mean? It means a lot to those of us who suffer from IBD diseases  We are hear to spread the word and raise awareness and have hopes to find a cure! It is important for the community to come together and hear this message for hope for the thousands that are effected and the thousands more that are being diagnosed, especially children.

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Have I?

Yesterday I was thinking….because of Crohns have I been a good wife and mother? Have my kids and my husband wanted/suffered because I could not give enough, do enough, be enough for them? Day to day it is a struggle just to get out of bed and function, but I do. I force myself to push through the pain, get up suffer go on like there is nothing wrong. I go on with my day trying to hide what is going on with me. I pass people in the halls at work, they ask me how I am I smile and say GREAT! How are you? I really am heading for the bathroom hoping I am not going to pass out from blood loss and have someone find me in there and call 911. My kids ask me when dinner will be ready, so I rush around to get there needs met, but I feel hot and sweaty and feel like I am going to be sick. I put a smile on my face. I crawl in bed, in severe pain, hoping I will not have to go to the ER tonight, my husband caresses my face and gives me the look of love. I want so much to be loving with him and be his dream girl…instead I am this sick girl who is dying slowly….know one sees this because I hide it I have been hiding for 20 years. I hate pitty! I am strong. Am I? I am kidding myself?

 

This disease takes it’s toll mentally too, sometimes we forget that it not only eats our bodies, but our soul and spirit too.  As a kid I just wanted to be normal, any hope of that was gone when I was diagnosed. One day I hope to wake up and this will all be a bad memory that will have made me stronger.

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An Uphill Battle

For the past few weeks I have not been feeling too well. I thought maybe after this last run of Entocort I would turn a corner, but the cycle of symptoms are back! I am switching meds to Asacol, which is the same chemical, but taken at a different dose and at different times. I also have been working with my hematologist and it is apparent that my blood work is not as good as it should be 😦 which makes me want to scream! I will now be receiving Venofer® iron sucrose injections for the next 5 weeks to combat anemia.  My white count is also elevated which I could have predicted based on the recent symptoms and apparent flare that is happening  I wonder if I ever went into full remission since last year or if this all has been a game the crohns has been playing?

 

I really wish there was some sort of option that would allow me to live a normal life without this disease  I get so tired of wasting my life doing this dance. I feel like I am missing my kids life, my life all because I am sick……

 

I often go to bed in pain, looking at my husband wondering if this will be the night I have to go back to the hospital. I find comfort knowing when my own GI is on call. I live my life around my bowels.

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We All Hurt….

What does it say about us as people when we are out to hurt each other? With everything that we face as humans it is horrible to think that it has become such a common day experience that these horrific tragedies happen like the ones in Boston. This is not the first and will not be the last. We have enemies that is clear, but as a nation we must band together to create real solutions to the things we CAN control. Too much we bicker about issues that could be resolved much easier than we allow them to be. Its not about being right, but about what is best and until we can come together and lay down pride and greed that will not happen. The destruction of us will happen and history will repeat.

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