Tuesday, August 02, 2011
I don't get it. I got 7 hours of sleep last night, but today I've felt terrible all day. There were some strange dreams in my head last night, nothing exceptionally bad, but just kinda disturbing to me. That led to me having a worse than normal headache (since I can't remember a day without a headache in my life) all day. For several hours it was so bad I could barely see, but I have too much to do at work to take the day off. So I just suffered through the day.
I'm home now, had cereal for dinner, took a shower, and took the medication that knocks me out for around 12 hours. I'm going to watch a little more of the news on the couch then go to bed (if I don't totally pass out on the couch). But this headache is so bad that when I was eating 'dinner' I started coughing and nearly passed out from the quick rise in pressure through my entire head and neck. Coughing is dangerous for me because it either leads to me throwing up or blacking out. Yet with all my digestive problems it happens all the time.
Anyways, I need to finally get an appointment with a neurologist. I don't know why I keep putting it off. Probably because I just have so many bills and barely enough income to cover the basics, and now I have to get another car and do some major work on my house so I can't really afford all this.
Woah, the meds are already kicking in, so goodnight.
Monday, August 01, 2011
What did you think about when you read the blog title? Maybe the London Bridge Is Falling Down song. Or maybe the idea of not burning your bridges with your friends, family, coworkers, etc. If you live(d) in or around Minnesota 4 years ago today, August 1st, 2007, you know what it means to say 'a bridge in America just shouldn't fall down'.
On that day, at 6:05 pm, the 35W bridge spanning the Mississippi River in downtown Minneapolis collapsed during rush hour, killing 13, injuring 145, and affecting the lives of more people than anyone could count. In the months following the collapse traffic was disrupted, the state was in collective shock, and people were watching the news to find out if the bridges they cross daily were declared safe or were going to be closed. Minnesota was angry and wanting answers, but no answers could change what happened. 4 years later the bridge has been replaced with an incredible state-of-the-art bridge, many physical injuries have healed, and a memorial garden opened today - but we pause to remember what happened.
When the bridge came down, I was sitting in my apartment in Wisconsin after having finished my last day at the job I quit to focus on finding a job in the Twin Cities (Minneapolis/St Paul). I got a phone call from my parents saying the bridge went down and I didn't understand what they were saying. What bridge? Where? I turned on the news and saw a stretch of road I had been over a few dozen times laying in the river. I admit, in that moment I questioned my choice to move to Minnesota. I started calling people, but couldn't get through because the cell towers were completely jammed with calls. I signed online to find who was posting and who wasn't, and it took a few days to find out that everyone I knew was okay, though there were several people I knew who had been on that bridge earlier in the day or expected to drive over it within a few minutes or hours after the collapse. Just a few days later I was in Minneapolis to visit some friends and drove right past the bridge; it was disconcerting to drive past where there was once a huge bridge and only seeing a road leading to empty air - that is something I won't forget any time soon.
Every day of my life is a challenge. Battling numerous medical conditions makes it difficult to not fall into all the pain, suffering, depression, and stress I have. At 6:05 pm central time tonight I will be setting all that aside and taking a moment to remember what happened and think about how easy it is for life to spiral out of control in a split second and change everything you know.
Don't take your health for granted. Don't think it won't happen to you or someone you know. Don't assume that everything will be okay - hope for great, expect standard, prepare for difficulties. Take a moment today - and every day - to remember that you don't know what tomorrow will bring and do something good for others and yourself TODAY, and never end a day without telling someone you love them.
Saturday, July 23, 2011
Warning: This blog could be a trigger for some people. If considering your life and your attitude could trigger you to binge or break your diet, please stop here. If reading hard-to-take statements will cause you to spiral into depression, please stop here. If you believe you're not ready to look into the mirror and ask yourself the hard questions, please stop here. If you choose to continue, please take a moment at the end to show yourself some compassion and love before you do anything else.
For those who are still with me, thank you and I hope this will help you and me.
In the past few months I've read some blogs, comments, and even articles on here that have ticked me off. In some cases it has caused me to completely avoid everything from those people. I just read a few more today that made me really want to step forward and point some things out.
First - if you believe every pound you gain while on here is water weight then you are seriously kidding yourself. The only way several pounds is water weight is if you are eating less than 1,000 mg of sodium a day and/or are drinking several gallons of water a day so that you can't pass water out of your body as urine. You will become so bloated so quickly you will hardly be able to move or function. This is toxic and can damage your internal organs. If you believe your weight gain is water weight, go to a doctor and get blood tests done. Otherwise consider the fact that muscle weighs more than fat. If you gain a small amount of muscle and lose some fat, you will gain weight. If you aren't exercising and/or tracking your eating you need to fess up to yourself and realize you are not doing what you think you are doing. Just hanging out on SparkPeople but not taking the steps to change is lying to yourself.
Next - just because you are overweight or obese you should not avoid being out in public in fear of ridicule and comments. Look around you: 30% of our country - 3 in 10 people - are obese! 50% are at least overweight - so 1 in 2 people around you are risking their lives! What makes YOU so special that all of these people are going to stare at you and attack you over everyone else in the room? Yes, people are stupid and hateful and make comments. But that is because they have problems. I am thin - I have NEVER been overweight in my entire life - I was even underweight in high school. Think about this - I was ridiculed, beaten up, laughed at, and had every horrible thing that has happened to you done to me as well. People find a target that will take their abuse and dish it out without hesitation. When you are waiting for everyone to reticule you they will see it in the way you present yourself and they will attack like hungry vultures. It is within you - and everyone else who has ever been tormented - to make the choice to believe in yourself and take away their opportunities. Don't say you don't want to go somewhere or do something because of what 'might' be said or thought about you. If you never take the chance, you're the one to blame for losing out on life.
Also - whenever I see someone complain about not being able to eat junk food or saying it was okay to totally blow their diet and pig out for a few days 'because I deserve it' I seriously want to scream. This is a LIFESTYLE change, not a most days of the month change! Think about those of us with health issues: people with celiac's can't just say 'I deserve a piece of cake today because I haven't had one in a week', if they do they get sick! People with type I diabetes must monitor their glucose, insulin, and food intake or they could die! Then there is me and others with gastroparesis (partial or complete gastrointestinal paralysis) - we can't just 'cheat' or 'do it just this once' because it will seriously hurt us! I could be considered 'lucky' because I'm not on feeding tubes or a liquid diet, nor am I on medication or a stomach pacemaker, I just am on a low fat, low fiber, moderate protein, moderate carb diet. If I listened to those people who said 'you can have it this one time' or 'just eat with us, it won't kill you' could stop my digestive system from working for WEEKS! So I think those people who are complaining about having to change their eating habits need to wake up and realize that if you are obese or overweight then every day you go without changing your lifestyle is a day closer to severe health problems and/or death. Waiting another day/week/month is less time you have to live a healthy and productive life. Complaining doesn't get you anywhere! Yesterday at work we had a 'cookout' and I couldn't have a single item there because I had no nutritional information to know what would hurt me or not. Sure I was looking around and wishing but I didn't stand there whining and complaining or crying in a corner. I brought my own food and sat with coworkers eating and talking. When they ask, I inform. If they don't care, that is their choice. Making the choice to complain to everyone about what you can't have, no one will want to hear it. Making the choice to give in and binge on everything there will harm you. Instead, how about moderating yourself and every once in a while having a LITTLE something that you crave and savoring it - because if you can do it without causing severe harm to yourself you're way ahead of those who can't.
A reality check for you - If you're reading this and think 'she's never been overweight so she has no idea what I'm going through' you need to think again. I've been surrounded by overweight and obese people my entire life. I tend to be friends with the 'fat girl' and the 'chubby chick' and the 'hideous wreck of a human being' more than I am with anyone that is 'thin, pretty, and perfect'. Why? Because I have ALWAYS hated myself and my life. I grew up being told I was stupid, fat, and ugly. I've been beaten and emotionally abused by more people than I can even remember. I do not have the ability to like who I am or what I look like, no matter how skinny I am or how many times people tell me I'm pretty. So I spend time with those who understand how this feels. If someone makes it clear they choose to be unhealthy I will leave them alone. But if someone wants to be healthier, I will do my best to support and encourage their healthy choices. So thinking that I couldn't possibly understand shows your prejudice against thin people. No one has to be a certain way to understand what someone is going through, all it takes is listening and supporting someone who is dealing with it. I haven't found a single person who has all of my diagnoses (beyond the 7 in the past year, I have at least 5 others that are chronic I don't talk much about), but I know that those people who have listened and supported me can understand how hard it can be without experiencing it first hand.
Lastly - thinking those of us who are thin have the perfect life, or that we never have hard times, or that we are just lucky to have a great metabolism is completely far-fetched. No one has a perfect life. Just because they don't have the same trials and tribulations as you doesn't mean things are perfect for them - they have other things to deal with you've never even considered. That movie star on the cover of the tabloid has been stalked by paparazzi and is shown to be an ugly hideous beast because she hung her head when she was running to the corner store without makeup on. The musician who has all that money has his girlfriend and family threatened by his fans while he is essentially alone on the road for weeks at a time. The model walking down the runway has been told she's too fat by some people and too thin by others, and probably hasn't eaten in days to get that concave belly. The tv star who smiles while hundreds of women demand the little time he has off during his hectic shooting schedule sometimes just wants a nap, not to be critiqued about every thing he does. That thin woman sitting in the restaurant eating a piece of cake might have done a 3 hour run this morning after her pet died last week a day after she found out her husband left her for his adulteress and she just needed to do one thing for herself - thinking she's lucky that she can eat that cake and stay thin is diminishing everything good about her because of what you hate about yourself. Next time, instead of thinking about what is perfect in someone else's life, try thinking about all the things that could be terrible for them then all the good that is in your own life!
None of this has been an attempt to offend you, so if it has - I apologize. In no way do I attempt to make myself appear perfect and without flaws - I have many more than you could believe. I am not trying to make anyone hate themselves or tell anyone that they are a bad person - everyone has the ability to be a great person, but it is for each of us to make the choice to do all the good we can do for those around us. Making a mistake is not the end of the world, it opens up yet another chance to do better. Sometimes we need to have our mistakes reveled to us so we understand that there is a chance to learn, understand, and make a change. I fully understand that everyone needs to vent and doing so to those who are going through the same thing helps us - but when it is the same complaints day after day it is time to get a little tough love. This blog is all about taking what has been bothering me and putting out there so anyone who reads it can reflect upon himself or herself and what improvements they would like to make in their attitudes and how they relate to those around them. I have been working on this in myself for a long time because it was thrown in my face all my life that I can't do good when all I think about is bad. So now, here is the good I want you to say to yourself (as I say it to myself):
I am a good person. I have it within myself to help those around me and help myself to do a little better every day. Making a mistake doesn't negate everything I have done in the past, it just reminds me that I can do better. I do not need praise and compliments from those around me to know that I am looking good, feeling good, and I am doing what I can in this moment - I only need to say it to myself to know it is true. Other people thinking or saying bad things about me doesn't make it true - the good I see in myself trumps everything negative from anyone else. One bad thought, one bad event, one bad day, or one bad choice does not define me or anyone else. Choosing the tougher but healthier path will get me farther in life than to do what is easy and convenient. I am beautiful in some way - and that is what I will show the world while I learn to love who I am.
Monday, July 18, 2011
I snagged these questions from Shari (mom2acat) who got them from someone else. I like the idea, so here's my version.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: I have several, but my gastroparesis (GP) causes gastroesophageal reflux disease (GERD), eosinophilic esophagitis (EE), and probably causes my reactive hypoglycemia (RHG) and type 2 diabetes (T2D). I still need to see a neurologist so more may come.
2. I was diagnosed with it in the year: Sep 2010 was GP, GERD, EE and ileitis (which should be healed by now) - April 2011 was RHG, T2D, and vitamin D deficiency.
3. But I had symptoms since: Looking back, I've had the symptoms of GP since birth, the GERD was 'suspected' since I was a teenager (~15 years), the EE started a few weeks before diagnosis, the ileitis showed symptoms for several years, the RHG I've probably had for many years, and T2D was only shown with 1 single test never in daily life.
4. The biggest adjustment I've had to make is: I had to completely relearn how to eat, why to eat, when to eat, and what to eat due to the GP, to minimize the GERD, keep the EE from returning, and attempt to keep my blood sugars in some area of 'normal'. I also move as little as possible now because I just can't eat enough food to keep me full so I'm not always hungry but eat enough calories to maintain a 'normal' level of activity. I've been exhausted and have had headaches every day as long as I can remember, and those issues haven't been figured out yet.
5. Most people assume: Just because I smile all the time doesn't make me happy - I'm attempting to make you feel more comfortable and help you forget how I'm different than you. Many people assume that I'm on a low fat, low fiber, moderate protein, moderate carb diet to stay skinny - if I eat incorrectly it can shut down my digestive system for days or weeks. Some people assume that because I'm 'sick' that I can't be the friend they want or even don't deserve to have friends - some people believe that once I was diagnosed with a chronic and severe condition that I should just stay away from them so they don't catch the 'negativity' of having to be different.
6. The hardest part about mornings are: No matter how much or how little I sleep I'm always tired. I also live alone and it can get lonely waking up to another day by myself (but sometimes it's better than waking up to people expecting me to act healthy).
7. My favorite medical TV show is: Mystery Diagnosis or other shows based on real stories of patients and the doctors who have helped them.
8. A gadget I couldn't live without is: I need a computer near me - I track a lot of things to attempt to aid doctors in figuring out what is going on with me, I use it to 'see' the outside world when I don't have the energy to leave the house, and it gives me a chance to keep researching my conditions (since I've yet to find doctors who can actually explain them).
9. The hardest part about nights are: It is so hard for me to fall asleep and stay asleep.
10. Each day I take: Protonix (GERD) and 50,000 IU 1x/week of Vitamin D - I have refused other medications because doctors have overdosed me on medications I shouldn't have been on. Until they can prove to me the reason for it, that they will pay attention to me when I tell them something is wrong, and especially can actually explain to me what the medication will do to help my conditions I will not blindly take anything ever again.
11. Regarding alternative treatments I: get 1-2 massages a month to relieve the pressure on my vagus nerve (neck and back), use breathing techniques when my blood sugars plummet too quickly to focus my brain to keep working, and use distraction techniques every night to keep myself from focusing too much on everything that's going wrong and all the pain I'm in.
12. If I had to choose between an invisible illness or visible I would choose: When you've had people say "there's nothing wrong with you - you look fine!" (including doctors) many times, you tend to think that a visible condition would be easier. Though when it is a visible issue, people can hold it against you even easier (note CAN not WILL).
13. Regarding working and career: I was laid off of work just before my diagnoses in September (under contract to not say more - read into that what you will). I spent a few months figuring out how to live in a new way then got a new job. I put in every bit of energy I have from 730-4 every day, often times put in overtime, then come home and want to collapse. But I am the only one who will give me money to pay my bills, mortgage, and buy food so I have to do what I have to do.
14. People would be surprised to know: Doctors have ignored my concerns and symptoms for years, throwing pills at me and walking away. I smile all the time around people to help them feel better even though it makes me feel absolutely fake. My blood sugar has been found as low as 36 - which could put some people into a coma but I was still walking, talking, walking, and driving. I haven't had a best friend in 10 years, a boyfriend in 11 years, a date in 6 years, and someone I could call at any time for anything - ever. I turned 30 in June but when people guess they are always 5-10 years short in estimating my age. I know and understand much more than anyone gives me credit for; in high school I got a 31 on my ACT without trying, I've studied the body in some way or another since I was about 13, I've been reading classic novels since I was in 2nd or 3rd grade, and my head is full of random facts.
15. The hardest thing to accept about my new reality has been: I am a zebra not a horse and that makes many doctors unwilling to help me. Also, when I am honest with people about my conditions they want absolutely nothing to do with me (excluding those who have the same or similar conditions); so I either lie about the most vital part of maintaining my life or I face everything alone - not a fun decision to make.
16. Something I never thought I could do with my illness that I did was: I have yet to find ways around some of the realities of my conditions to do many of the things I wish I could. Instead I have to come to terms with my limitations until something changes - I have to hope things will change.
17. The commercials about my illness: don't exist. Many doctors haven't heard of several of my diagnoses and more don't know what the diagnoses are. I am my own commercial, giving people whatever knowledge they will accept from me.
18. Something I really miss doing since I was diagnosed is: I absolutely miss being able to eat whatever I want and I miss fruits and veggies (to a point of course haha). I also miss being able to be sociable without worrying about collapsing from exhaustion or other issues while in random places.
19. It was really hard to have to give up: White cheddar popcorn - every time I see it in the grocery store I want it; but once I start I can't stop until my stomach is in severe pain from the fat and fiber. It is always hard having to constantly pass on going where I want to do or doing what I want to do.
20. A new hobby I have taken up since my diagnosis is: I've started couponing to attempt to save some money to help pay medical bills. I also finally got a coloring book and crayons because I'm not ashamed to say that it helps calm me down in the evening.
21. If I could have one day of feeling normal again I would: Go running, go to a concert, eat every food I crave when I crave it, drive to another state just to have dinner with an acquaintance, and do anything I can think of to expel energy!
22. My illness has taught me: I never have and never will be what others consider 'normal'. I am completely different and I have to deal with that. Also I've learned that no one will take care of me and look out for my well being as diligently as I will. So I have to keep my wits about me as much as possible.
23. Want to know a secret? One thing people say that gets under my skin is: "You're lucky you can eat as many carbs as you want." Really?!?! So having to give up fruits, veggies, whole grains, many fattening food - including most nuts and healthy oils - is lucky? Well you're lucky that you get to eat every day! You're lucky you can exercise! And I can't have that many carbs anyways! *grumble* Also when people question what I know about my own conditions I want to scream. Living it and researching it for hours upon hours means I know more than you - deal with it.
24. But I love it when people: say 'you are always smiling and seem so energetic, I had no idea you were so sick!' Also it is great when I find someone who can have an intelligent and knowledgeable conversation with me about health and the body, or anything else of consequence.
25. My favorite motto, scripture, quote that gets me through tough times is: I don't have one. I don't have a choice to make it from one day to the next, so I just do it.
26. When someone is diagnosed I’d like to tell them: Learn about your diagnosis so you have an idea what to expect, can talk with the doctor about it, and can inform others.
27. Something that has surprised me about living with an illness is: how many people take their health for granted then are quick to blame someone for a condition that can't be prevented or cured.
28. The nicest thing someone did for me when I wasn't feeling well was: My father drove 3 hours and spent almost a month at my house when I couldn't eat hardly a thing for weeks and thus couldn't drive to appointments.
29. I’m involved with Invisible Illness Week because: People can only understand when they have knowledge available to them. Offering information to those who want it helps everyone.
30. The fact that you read this list makes me feel: a little more hope that people are willing to learn and understand the situation of others.
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