Monday, June 04, 2012
Tomorrow I turn 31. I could do a ton of reflecting on my life, think about all that's happened to me, what I've accomplished or failed at, what I want for the future or what I still want to accomplish. Instead, right now I want to post a couple songs that I've been jamming to lately, in hopes that they will inspire others: either to believe in themselves or to get up and dance!
I love the chorus of this song:
I can bless myself
There's no need for someone's help
There's no one to blame
There's no one to save you but yourself
I can justify
All the mistakes in my life
It's taught me to be
It's given to me
And I'll survive
'Cause I have blessed myself
The energy in this song and the idea of "I can be anything, anything, anything" and "I'll make you believe in me" just pumps me up and makes me want to believe in myself and know that I can accomplish my goals!
This song has such an infectious beat and makes me want to get up and dance! The moves aren't incredibly difficult, and with a few tries at least some of them can be done in a way that will help a woman feel sexy. The song is all about the power of a woman to know what she wants and to go for it! Hard to disagree with a powerful woman, right?
Honestly, if Ian Somerhalder can learn this dance, so can you!
Then I've got to add in a little inspiration for anyone who is dealing with a chronic illness but knows that there's always a chance for new, brighter days ahead.
Of course, there are tons more I could share, but those will take up enough of your time for now. Remember that it's so important to celebrate YOU and your accomplishments. Don't get hung up and held back whenever you fall on your journey - that will turn a fall into giving up. Instead, find a way to move past the error while learning from it. Even so, when things seem too difficult, focus on doing your best in one thing until you can move to something else. If you think your life is getting too hard, focus on small changes that will make things better. No one can be perfect, but we can all try to do better.
Forgive yesterday, hope for tomorrow, do better today - because every day is a chance to do a little better!
HAPPY BIRTHDAY TO ME!
Friday, June 01, 2012
My birthday is coming up next week. On Tuesday I'm turning 31! I'm excited to be doing something on Saturday with a friend and her kids to celebrate. I'll let Chris Shaffer from WCCO weather tell you about it!
Yep! We're going on a Mississippi riverboat cruise! It's a huge riverboat, so I'm hoping it won't cause any problems with my dysautonomia (just-in-case I'll take some anti-nausea meds) and I shouldn't have to worry about any spray from the water getting my dressing wet because the boat is slow-moving. I'm sure being in the fresh air and sitting up for the 90 minute trip, plus the drive there and back will exhaust me, but I'm looking forward to it. Afterwards, we're going to Coldstone Creamery because I have coupons. If I pick non-fat ice cream or frozen yogurt and have low fat mix-ins then split it into 2-3 servings I can savor some. I'll bring along tupperwear containers to put it in then split it up into several containers at home so I don't overdo it. Though with 2 kids there they might help me eat it up. hehe
Then on my birthday, this will be the 3rd year that I'll go to Denny's for a free breakfast. I'll plan what I'm having ahead of time to have as minimal amount of fat and fiber as possible, but I'll get to enjoy something I rarely get (even if it means taking a nap at home afterwards to be able to digest it)! I might head to the movie theater in the afternoon for a matinee using a gift card I have, but I'll probably stay home and watch a movie rented for free from the library (something I've been doing a lot lately). I might also head to DSW (I have a gift card for there also) to see if I can find a new pair of shoes that will be comfortable this summer, since I keep having the chilblains and sores on my left foot making walking painful. Of course, if it's a nice day and not too hot I'm hoping to spend some time sitting on my deck reading a book. The highs in the mid 60's we've had the past few days has been a little chilly to do so. Just because I have no money doesn't mean I can't celebrate myself in a nice way.
Thursday, May 31, 2012
I've been on SP for 600 days (since Oct 9th, 2010) and I've never missed tracking a single meal. Sure, there were days that it seemed too annoying to get on and do it, but because I have a partially paralyzed digestive system it has become very important to know exactly what I'm eating every day. I need to know the information to share with my doctors, but also I can track my symptoms and then I know what foods my body will digest and what it won't. Without having tracked EVERYTHING for these past 600 days I wouldn't be where I'm at with treating my medical conditions and trying to get healthier. I'm not on SP because I'm trying to lose weight - I'm fighting to gain weight because the inability for my body to accept adequate nutrition has caused dangerous weight loss that has actually risked my life and caused me to be underweight for most of the past 6 months. Now that I'm on alternate nutrition (TPN - IV nutrition) and getting a large portion of my daily calories from that (up to 1600 each day) I'm finally nearly at my goal as set by my GI doctor - which is a BMI of 20. This is wonderful! I have some energy for the first time in nearly 2 years! I spend most of my days laying on the couch, exhausted just from being awake. I've fought a tough fight for a long time, including through the prejudice of people looking at my thin body and thinking there's no way I'm not on a strict diet and exercising constantly.
I'd like to put a challenge out there to anyone who's interested: track your food HONESTLY. Either take a few minutes after every meal to enter it in, or write it down and enter it at the end of the day. You might think you'll never hit 100 days or get anywhere near 600, but with a little effort, those days add up quickly! I've tracked during hospital stays and days where I was so weak I couldn't sit up without passing out. I made it a priority to log on and do it, and that's what it takes to get it done!
My journey is different than most people here on SP, but tracking nutrition is a large portion of learning about what food is for - to fuel our bodies! It is something that everyone can do!
Share with me how many days in a row you've tracked your food and what you've learned from it!
Wednesday, May 30, 2012
Good news: the allergic reaction around my PICC line seems to finally have abated! My whole arm is still itchy, but it seems to be more because the skin is dry and peeling as it's trying to heal (my skin is normally incredibly soft and smooth because of my Ehlers Danlos). Hopefully in another week or so it will be back to normal.
Yesterday I did some errands. It totally wore me out (even with the TPN I still wear down quickly), but I got some awesome deals! I saved a ton of money by hitting sales and using coupons for things I needed. Today I got a few more things done, mostly a ton of phone calls. There's more I should've gotten done, but I wore down quickly after a trip to the library. I had chest pain and was lightheaded, so the trip was cut short.
There's something I'd like to share with all of you. Most of my life I've wanted to be known as a positive influence and hopefully inspire others to do better in their lives. Unfortunately, because I allowed others to influence me in a negative way and tie me down in depression and pain, I was always considered negative, bad, and not worthwhile as a friend. Since I started making better choices, including choosing to be more positive and believing that I can do good in the world even. I have several awful and incurable conditions, but I don't want to be defined by what I can't do or by something I have no control over. Instead, I want to focus on the better choices I am making.
That being said, I realized something even more important - nothing I can do will make negative people be positive and nothing I say can influence or inspire people who don't want to be influenced or inspired. There is no point in beating myself up if I can't get others to be positive. I can't expect it, I can't hope for it, and I can't focus on it. I need to be true to who I choose to be and as I come across people who I can help be more positive, then I feel privileged to do so.
news_detail.asp?health_day=665169 SP posted this health story. Seems like I'm a good path!
Friday, May 25, 2012
I've been too out of it lately to do much for blogs, but I just took the time to write out a huge entry for Caring Bridge, so I'm going to share that will all of you instead of retyping it. There's more I'd like to say to all of you, but I don't want to waste energy and brain power trying to remember everything again and type it out here for you. So here you go; I can always add more another day.
Things have been quite busy and tiring here lately, which is why I haven't gotten around to an update. A lot has been happening, but much more is still in progress. Since my conditions are chronic and not curable, this is how things will be for many years to come. Some days all I can do is the bare minimum and I've had to learn to be okay with that. If it's too hard to do something on any one day, then I have to set it aside for another day when I have energy or I have to accept that it might never get done. Sometimes I'll choose to spend my energy putting me first - purposely resting to attempt to save up enough energy for tomorrow or even a week in the future. This means when I have something important to do, my life must be planned and structured around making those important things happen easier. This is more than writing lists and figuring out what days to do what - this is making choices about what/when to eat (or not eat to save myself pain and energy), purposely not doing something until I know I have energy I don't need for something else, and above all not letting others make demands on me that I'm unable to meet.
Right after I posted the last update I was approved for disability transportation. This means that I can call and have a small bus pick me up and take me anywhere I need to go. I have to plan at least a day in advance to make sure I can get the trip (calling the same day lowers the chance of getting a ride). The cost is minimal (about double a bus ticket) but that's a lot better than the cost of a cab or risking my health when I'm not able to drive myself (like for longer distances, in rush hour, when I'm not feeling well, or in bad weather). I've used it several times and they're wonderful. In addition, because disability rules are the same throughout the country, I can get transportation in any city in the US as long as I prove my eligibility ahead of time and show my MN ID. This means when I'm in Philadelphia I can have them drive me (and dad) around.
The new PICC was placed and within two days my arm started up a new allergic reaction. I'm on a prescription form of antihistamine (like Benadryl) to try to keep it under control this time. It been red, slightly swollen, and somewhat itchy for the 2 1/2 weeks it's been in. It's also weeping (fluid is coming out of my skin in attempt to protect it) which means I've been having the home nurses come twice a week to change the dressing - I don't want it to cause an infection! Each time they come we change what's going on my arm, removing most of what they use. We've changed the see-through plastic dressing (like what goes over an IV) to a more hypoallergenic type, stopped using any adhesive removers, skin protectants, skin cleansers, and a small piece that helps hold the end of the PICC in place. We've cut back on how much tape is on my skin and only use rubbing alcohol and Betadine to clean off the area. Still, it keeps reacting. It is looking a little better than it did just a week ago, so I'm really hoping it's stopping and the current itching is from it healing! Also, the nurses are just starting to use a new type of dressing made by 3M that's designed specifically for PICC lines with a special shape and notch plus comes with pre-cut pieces to hold the end of the PICC in place instead of tape. We put one on the inside of my forearm to see if I'll react to it. The allergic reaction has reached all the way there so if it looks better while under this then there's a chance the new dressing will be okay for me.
Last week was the trip to see my GI doctor. When I told him that the Ehlers Danlos is confirmed and Dysautonomia is suspected, it was like a light went off. Both conditions can cause GP, so there's a decent chance that those are what caused my GP, and since neither is curable there's a chance the GP is here to stay. Because of that, he emailed my primary doctor to tell her that if I keep having the allergic reaction around the PICC or gain the weight and lose it again when the PICC is eventually removed, the next step is to put me on a jejunostomy tube (feeding tube that goes into the small intestine). He'd prefer a nasal-jejunostomy tube, where they put the tube down your throat, but I explained to him that my sensitive esophagus and throat would cause me to have no ability to speak with that in there, so there's a possibility of having it immediately place through a hole in my abdomen. We'll have to see what happens the next few weeks.
Early this week I had my autonomic testing done in Milwaukee. The doctor needs to review the tests and he will give me the results next month when I go back. I can say that based on what the test administrator said I had some odd reactions. The most pronounce was during the tilt table test. I was loosely strapped to a table then raised up to just shy of vertical and then should have stayed there for 30 minutes. Unfortunately at 23 minutes in I started gasping for air until I couldn't breathe at all. She dropped the table right down again. Clearly standing nearly straight shouldn't cause a person to not be able to breathe! There were a few other tests, but the whole body sweat test couldn't be done because the powder that's used and the high heat and sweating could have caused serious problems or even an infection around my PICC line. They did a different type of sweat test though, where only 4 spots (1 arm, 2 leg, 1 foot) were used in an attempt to make the spots sweat using a neurotransmitter liquid and an electric current. All the tests were very bothersome to my body, but as is my normal fashion I was trying to crack up the tester and get her laughing. It made it easier because she could see that when my body freaked out it was physical reactions, not a panic attack - something many doctors and nurses have mistakenly thought.
The trip to Philly included the first time I've had to fly while on TPN. Considering I couldn't go through any machine and thus had to be patted down and that they had to test everything for bomb residue and review all of the supplies I had to take with (I took 1 bag in case there was problems with the hotel receiving the shipments of 2 days worth of bags and supplies) it wasn't as bad as it could have been. The flights were long and difficult (as usual) but were complicated more whenever someone tried to grab the backpack with my TPN to carry it for me or to try to stow it. Same thing with the cooler that had my extra TPN and supplies, as it wouldn't have taken much to puncture the bag and then I was screwed. Even so, the flights to/from Milwaukee were in some ways easier yet harder. On the way out we had a 5 seat, 2 engine plane and on the way back a 4 seat, 1 engine plane. On the way out we flew through a cold front (which made me incredibly sick) and landed through a thunderstorm that parted just long enough to let us land. On the way back we had to take off and land in high winds. Oh, and because of the testing that had to be done, I couldn't take any of my meds for 2-5 days (depending on the medication) before the tests, which meant no anti-nausea meds, PPIs or antihistamines during the flights back from Philly or going to Milwaukee! No fun for a person who can get nauseated just from turning their head!
I want to send out another thank you to my aunt, uncle, and cousins who were incredibly generous in opening up their home to me and dad, as well as driving us to and from the airport as well as lending us a car to go to the appointment. This was incredibly kind, so THANK YOU!
Also, I'd like to pass on a great big THANK YOU to the Lions and Lioness clubs in New Lisbon for hosting a fund raising event for me a few weeks back. It is greatly appreciated! Also thank you for everyone who stopped by and supported the efforts.
Something interesting I'd like to share before I wrap this up: one of the disability transport drivers has told me she thinks I'm incredible, an inspiration, and should be a motivational speaker. Talking with her and another rider I did what I could to cheer up their day while also sharing my story and how hard I'm working on being positive and motivating. After she said this to me though, I started getting tears in my eyes because of how huge of a compliment it is for me to hear that. I've had so many people over the years tell me I was negative and hateful and hurtful. I've been blamed for bringing others down and ruining their lives. I've been chided for not believing in myself and letting others walk all over me. So to have someone say that I made their day significantly brighter made me feel INCREDIBLE! Also, my favorite home nurse told me she thinks I should try my hand at writing a fictional novel. The fact that she believes in me and thinks I can do it feels great. The support I've been getting by a few amazing people who really believe in me really helps keep me going. Even more importantly, the support and positivity helps me better handle the stress I'm under and actually helps me to have better, healthier days. When I can have some relaxation time and have positive people around me to keep my spirits high, I can actually eat more and do more each day. It is really true that negative attitudes breed negative physical problems while positive attitudes are food for healthier bodies!
The doctor appointments are done for a little while (at least the major ones), though I still have plenty to do and plenty I'm working on. It will be nice to have a small breather (other than paying bills and working on all the paperwork I still need to get done). Honestly, I think working is easier than being on disability!
I hope everyone out there is having a great Memorial Day weekend! I'll be spending a lot of mine reading a book series and watching dvds rented for free from the library. One great thing about the library system here is the vast amount of free items they have for me to spend my time doing when I don't have the strength or energy to get off the couch. I'm definitely loving it!
Get An Email Alert Each Time 1STATEOFDENIAL Posts