Thoughts

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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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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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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Feeling Like Crap… Low ferritin levels

Today has been one of those days you want to crawl inside a hole and hide from the world. I woke up to a very sore throat, so I think I am catching my husbands cold. I have been on Entocort for my recent Crohns flare, so my ability to fight off stuff in nil. I have physically felt like dog poo all day and to add to it, my job is not Disneyland! The people I work with just dont get it. Some days are rough, today is one of those days.

 

I saw the hematologist today, I am being put on an iron supplement as my Ferritin is too low.

 

Ferritin is a protein that stores extra iron for when the body needs it. Low ferritin levels indicate you have low iron stores. A simple test can be performed to see what your ferritin level is if you are experiencing symptoms of low ferritin. A low ferritin level will not always cause symptoms, but when low ferritin symptoms do appear, they usually include the following:

  • Minor aches
  • Fatigue
  • Weakness
  • Heart palpitations
  • Increased pulse
  • Loss of energy
  • Loss of libido
  • Confusion
  • Irritability

Causes of Low Ferritin Levels

In order to feel well, it is important that all parts of the body, including the systems of the body, work normally and that we have the proper amounts of all essential minerals and other nutrients our blood and bodies need. Iron is a critical component of the blood and is an essential part of hundreds of proteins that are needed for energy, the synthesis of DNA and for antioxidant enzymes. When you do not have a sufficient amount of iron in your blood, you may develop a condition known as iron deficiency anemia, the most common kind of anemia. Anemia affects your red blood cells, which carry oxygen from the lungs to the rest of the body. If your body does not make enough hemoglobin because it doesn’t have enough iron, the result will often be iron deficiency anemia.1

Low ferritin levels are often the precursor to iron deficiency anemia, and there are many causes of low ferritin levels:

  • Excessive blood loss (due to heavy menstrual flow, gastrointestinal bleeding, infections, IBD, cancer)
  • Malabsorption of iron (healthy absorption is about 10-15% of the iron we consume)
  • Insufficient intake of iron in your diet

To improve you ferritin level, you should consume foods rich in iron such as lentils, kidney and lima beans, spinach, beef, dark meat turkey, chicken legs, chicken livers and cereals fortified with iron.

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Be Your Own Best Advocate!

For years I went untreated. As a kid, my parents did not know to question doctors or to speak up when something did not seem right. They were from the old patient generation where you just did what the doctor told you. Times have changed and patients are in more control of their healthcare than ever before. With technology that has evolved all around us from mobile apps to websites that allow you to keep track of records and schedule appointments etc. Now that I am an adult and in control of my health here are some things I find useful. You have to be your own advocate! When I say that this is what I mean: Ask questions! Tell the doctor what is going on with you, ask questions on why these things might be going on. Ask for tests that you may think might provide answers. Ask the doctor help you to figure things out. Tell the doctor your fears. Now all this means nothing if you don’t have the right kind of doctor that is not willing to give you another thought. You will have to do the leg work and find a doctor that cares about you. I went several years being afraid of GI’s after the first one, Dr. Paul Bergreen disregarded me. He chalked all my problems that I have had since I was 8 to IBS and did not bother to look any farther. After he treated me like a stupid girl that only had symptoms in her head, I just dealt with the symptoms. There were times throughout the years where I thought there was a chance I might die at home if things got bad enough, but it was more scary to walk into an ER. So the lesson here is fight for the right to be taken seriously!

Here is my List of what to do:

1. Track all your symptoms

2. Keep a binder of all your lab and medical records so you can take to doctors appointments

3. Stick up for yourself, dont back down, be heard!

4. Find a doctor that is willing to do the work with you

5. Listen to your body

6. Do whatever you can to keep the peace within your body, eat well, rest well etc. (dont give your body a reason to fire back)

7. Dont let one bad doctor keep you from being treated

8. Look doctors up on the board of medical examiners website. Also google your doctors and see if there is any “dirt” on them!

9. Dont be a pill popper. Consider all medications, their interactions etc. Keep track of what you take, when and why.

10. Be your own Advocate! Dont give up. It took me 23 years to get answers and I almost gave up and had I done that I might have died.

 

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