The content in this blog is based on my experiences and the guidance I have received from my Care Team determined by my individual and evolving needs. Before beginning, trying, or experimenting with anything mentioned in this blog, you
For the last couple of days I've been having some major asthma issues.... I mean - extreme moments of "I cannot breathe, should I give myself a Greys-Anatomy-inspired-tracheostomy??" Thankfully, my other health issues went into a bit of a false remission while I was taking the steroids, especially the lupus and fibro pains. Yet while I was taking this horrible stuff, my blood sugar was raging out of control! That's ok though, because I would rather be able to breathe and just have to avoid certain foods while I'm on prednisone. The thing is, I become extremely emotional while I am taking Prednisone. I cry easily and over things that normally I wouldn't bat an eyelash at... Then again, the exhaustion of fighting to breath every moment of every day is probably catching up with me... I can't sleep at night and I can't get a break (of downtime) during the day. Please keep me in your prayers, this asthma is no joke.
Nov. 13. Evolution. Write about how being a patient or caregiver has changed you. How have your goals changed? Have your values changed?
I was always the one helping take care of everyone while I was growing up. I assisted Mom with babysitting, by either changing diapers, giving snacks, helping younger kids with their homework, etc. I also did a lot of work with the animals on the farm, feeding and watering cattle, slopping pigs, etc. So when Mom and Dad became sick, I stepped into that role of caregiver without a second thought. I don't regret it, because it taught me a lot about myself and the perspective of others in that role. Professionally I work with adults who have mental or physical disabilities... It's that caring nature coming out again.
Once I was diagnosed with my condition, it gave me a shocking perspective that changed how I cared for others. It changed how I see different things, no longer is fatigue synonymous with sleepy. I know that sounds weird but for me it is the truth. Sometimes the fatigue can be so bad that I struggle just to do what I absolutely must do... but I'm not sleepy or sleep deprived. I'm just fatigued and my limbs are so heavy that lifting them sounds as unrealistic as lifting a parade of elephants with my bare hands... yet I do it, every single day. On those bad days, I have never been so thankful when they occur on the days that I'm off work.
I used to be an activity based person, bonding with others through actions, games, etc... Now I am much more conversation based. And the brutal truth is that that is becoming more and more text based. Its not that I'm hiding from the world, but with my asthma the way that it is, actual conversation can be difficult to manage sometimes - especially when the pain and fatigue is at its worse.
Ugh I have been sicker than I have been a very very long time... Major asthma attackS - as in multiple knock-me-out-cant-breath attacks a day! Severe bronchitis Strep throat Double Ear Infections Nose Bleeds Vomiting Diarrhea Blah!!!! I missed three whole days and two half days of work - which NEVER happens with me! I am almost always at work :( Luckily, I was at home and Jennifer was there to take care of me. :) It may have went a little bit like this...
.....and then this....
... but its the thought that counts!! Right??
In all seriousness, I couldn't make it through a normal spoonie day without her love and support, so her willingness just to be there was key to my survival of this ordeal.
I am definitely having one of those days! I just want to tell everyone "No thank you, just worry about yourself." I'm not referring to friends or family members who genuinely care about me and are sincerely checking on me - but for everyone else...
I'm fine. Family is fine.
Work is good, just keeping me really busy.
Thank you for asking.
Worry about yourself, please.
It's not that I don't care that others care or I mind - its just.... I don't have time to stop and think about how I am and I don't have the energy to try to put it into words so someone else can comprehend. I just... I do better if I can just keep going. One foot in front of the other, one day after another. Healthy or not - I don't know yet. But thank you for your concern, just worry about yourself :)
Those that know me, know that I have pretty bad asthma - which my lupus tends to aggravate. Today I am thankful that my asthma seems to be easing up a bit. Hallelujah!
I couldn't be happier!! Seriously. I'm even happier than this crazy hyped up gator.
The thing is, today is one of the first days I've been able to breathe semi-easy (especially for this time of year)... and how do I spend the day? Resting. lol I have been able to actually rest and recharge my battery a bit, not being able to breath wears a girl out. On the topic of asthma, I really want this shirt.
I am so very thankful for Netflix. I know that this may sound a little out of place in my list of blessings, but I sincerely am appreciating Netflix today. It's a rough day, pain and fatigue, monster headaches. Blah. But you know how that is. More specifically, I am thankful for The Cleveland Brown Show.
This show has me in stitches today and I would like to share one of my
favorite moments... that reminds me of myself. lol I did find a better
vid of this clip but I love the guy's laughter as he is recording it.
And the part that reminded me the most of myself was when he steps on
the treadmill and is like "Ooh this isn't so bad"... and then Holt turns
it on! LOL
Day 3: I am thankful for the brief escape that Netflix provides those of us with chronic pain.
I have to admit that I never really took any over the counter supplements until I started getting sick. I have many healthy friends who take vitamins, mineral boosters, and various other supplements to help maintain their health. I know even more chronically sick individuals who rely heavily on their supplements to have the best day possible. This morning as I was checking my email, I ran across this Yahoo! Video and thought it was interesting.
Luckily, when I first started taking vitamins and supplements, I was going to a holistic doctor who helped me ease into this world of nutritional additives slowly. I only take a few, but I have been taking them for a while now and definitely can see the difference they make.
Here is my list:
CoQ10 - helps give me energy during the day, also good for my heart.
Vitamin D - I am a major sunscreen user, every inch of exposed skin is protected from the harmful rays - but that also seals out much needed Vitamin D. Your doctor can run a blood test to see if this would help with chronic pain and how much your body needs.
Like so many others on YouTube, I am a faithful fan of Michelle Phan's videos. I'm not one for wearing a lot of make-up and things, but I do enjoy her homemade skin care secrets.
For example, Michelle walks us through making an exfoliating scrub out of three things that can be found in anyone's kitchen. This is definitely on my "to do" list!!
In this video, Michelle shows how to use an organic egg to give yourself a facial can tighten and boost your skin's appearance. I haven't tried it yet, but I am considering it.. :)
Here Michelle walks the viewer through making homemade pore strips!
Here are the links to a few other low budget homemade tricks that she clues us in on:
This has got to be one of my favorite scenes from the Golden Girls. For anyone who hasn't seen it, the Girls are babysitting for a friend and the baby refuses to go to sleep! So Rose voices one of her many St. Olaf ideas on how to soothe the crying baby.... This is her plan in action.
I have been having a lot of problems sleeping lately. I'm not sure what is going on or how to even explain it... but I am confident that others who are either chronically sick or grieving can definitely relate.... Unfortunately, I don't have any tricks or tips on how to handle these sleepless nights.... I imagine being serenaded by the Golden Girls might not put me to sleep but I am confident it would make me smile... and maybe feel less alone during these isolating nights...
Today has been an ok day, I’m not feeling the best. A bit of a fibro flare up, more of a brain foggy fatigued slow motion kind of morning than anything with a lot of high pain. One of those times when it feels like your head is under water and you can’t really understand exactly everything someone is saying to you but you can kind of get the jist of it? The brain fog is the hardest symptom for me, I can be in the middle of a sentence and completely lose my train of thought. Or my brain will kind of hiccup and I can see an item in my head and cannot bring myself to say the name of it or I can't think of what to call it. Thank goodness for my stint in American Sign Language because I usually end up using the sign and making sound effects to communicate what I'm talking about.
Sophia Petrillo isn’t the only one who has gotten more intuitive about the weather. I have been having a flare-up over the last few days, muscle pain/cramps, joint stiffness, and swelling. I have had worse flares, so I am still thankful that I am off work this weekend so I can rest. Even with the muscle cramps that bring tears, I am still very blessed. Especially considering that this weekend, as I am writing this, Hurricane Irene is having her way along the North Eastern seacoast of the US. The people receiving her wrath are in my prayers, my heart goes out to those families who are losing everything...
I have been in a hurricane once in my life, and trust me it was more than enough of an experience. Granny and I were on a cruise ship near the Bahamas when Hurricane Wilma hit in 2005. What surprised me more than anything about the storm, wasn’t the force of the rainy wind or the violent way the ocean threw the boat around – but the drastic drop in temperature! At this point, I had not experienced the traumatic event that triggered my fibromyalgia, so I was chronic illness free! Perhaps I should have taken the storm interrupted vacation as a sign, because shortly after, my life changed forever.
Growing up, my grandparents were able to predict the weather. Later on in life, my Dad was always accurate when it came to spotting a cold front on its way here. As an adult with a chronic illness, I can put my hat in the ring for knowing when changes in temperature are approaching and not only can I smell the rain, I can feel it ten miles away.
Sorry this post is a little rabbit-chasing, but this flare has definitely brought its share of brain fog. :)
Over the last few months I have began to look forward to the newsletters in my inbox from IVillage. This morning, I was very happy to see an email about relieving pain naturally. I'm up for anything (at least once) so I thought I would browse through and share some of the highlights here.
The first option was Yoga for pain relief. The article mentions a lot of different types of pain, from hangovers to pms to sinus pressure. For me, what helps the most are the anxiety breathing and backache poses. I'm not flexible AT ALL (picture the Tin Man when he started getting oiled, that would totally looked like me if I stopped coloring my grey!) and yet I found a way to do these positions comfortably.
The next option was 20 Natural Pain Remedies from your Kitchen. I have to admit that at first I wasn't too impressed with what it offered, but when I seen that ‘fresh pineapple daily can cut painful bloating within 72 hours’ that definitely got my attention! As anyone who takes Neurotin will tell you, I'm bloating up like a fish! And I love fresh pineapple, so if it works it will be win-win!
Another thing that I do to ease my pain is try to distract my mind away from it. It isn't always easy. The newsletter had an article, Surprising Ways to Ease Pain, lists some of my favorite methods of redirecting my attention away from the pain.
What do you do to ease your pain? Do you have any natural or mental tricks? Please share your experiences in the comments below!
Most people who know me professionally will tell you that I am always busy and rarely find myself with very much downtime. Those who know me personally know that I struggle with fatigue. I think that is one of the Fibro symptoms that is the hardest for me to navigate around. Before I started seeing my current PCP (Primary Care Physician) I was going to a doctor more focused on holistic treatment. He suggested that I experiment taking Coenzyme Q10 or CoQ10. At the time, I didn’t try them because I had other things going on that I felt would make it hard to judge if they worked or not.
About three weeks ago, I touched base with my current Physician- she said she did not feel the supplement would take anything away from my current treatment plans. So I picked up a bottle of CoQ10 liquid caps and thought I would give them a whirl.
While filling my pill boxes for the week, I added one 100mg CoQ10 pill to each of my morning doses. I could tell a difference almost immediately! Within 30-40 minutes of taking the pill I began to feel more awake and within an additional hour I had more energy than I have had in several days. It was as though I had drunk one of those 5 hour Energy Shot drinks again – except I didn’t crash (mentally) afterwards at all and I didn't talk four-hundred words a minute either! lol I did, however, get very hungry several hours after taking the supplement. Over the last three weeks I have learned that if I eat a good breakfast before taking the CoQ10 I don’t get hungry after. For me, taking CoQ10 works. I can feel the energy boost for a while too, if I start to pick up my activity later on in the afternoon I can feel that energy surge slowly filtering through my body. I’m kind of kicking myself for not trying it earlier.
As with anything else discussed on this blog, please touch base with your Doctor or Health Provider before altering your routine, medications, etc.
1. Carnivals, fairs, and amusement parks. Nothing better then spending the day eating corn dogs, smelling cotton candy, and riding thrilling roller coasters! Early in the mornings or later in the evenings are the best times for me, it tends to be less hot and sometimes you can have less of a crowd.
2. When the temperatures start soaring, nothing feels better than running through a cold sprinkler, fountain or fire hydrant.
3. Go to the beach. Swim in the water, build sand castles, play with a beach ball, sun-bathe and have LOTS of fun! Most people forget about their local lakes, rivers, and harbors - some offer a swimming area and a sandy beach.
4. Go rollerblading, swimming, biking, or skateboarding – anything you enjoy. (Personally I look for a rocking chair or swing in the shade.)
5. If you hear the music from the ice cream truck, go and get some!
6. Have a campfire and make s’mores!
7. Windy day? Fly a kite!
8. Go camping in your backyard. Sleep under the stars with your friends, and sing campfire songs or tell stories.
9. Grab your water guns, water balloons, buckets, hoses and whatever you’ve got…and have a water FIGHT!
10. Go to the nearest park and have a picnic with your pals. Ride the slides, hop on the swings, play Frisbee and take a whirl on the merry-go-round.
Thank you Monique for developing the 10 Day Sickie Challenge! For more information on how you too can take part in this experience, get more information here.
Day Nine: Two Recipes!
These are two of my "go to" recipes for when I'm having a fibro day. Its very little cooking, easy peasy, throw together delicious. And they can be converted into a healthier option!
Fibro Friendly Chicken Salad
Yield: 6 cups of chicken salad.
3 cups cooked chicken breast
1 red apple and 1 granny smith apple (doesn't matter which kind of apples, as long as there are 2)
touch of lemon juice
1 cup sliced, seedless grapes
½ cup chopped celery
½ cup Craisins
½ cup to 1 cup of light mayonnaise (to taste)
½ cup walnuts, chopped (or can use toasted slivered almonds)
salt and pepper to taste
Chop both apples into small cubes, and place into a bowl. Sprinkle over 1 tablespoon of lemon juice over apples, this will help them from turning brown. Add chopped chicken, chopped celery, grapes and craisins. Mix well. Add 1 cup of light mayonnaise, and stir well. Depending on how the salad is coated, you may want to add an additional 1/2 cup of light mayonnaise. Season with salt and pepper. Allow flavors to marry in the refrigerator in a covered container for about an hour before serving.
I love it on bread, toast, crackers, and even just with a spoon some days!
Fibro Friendly Chicken Alfredo
1 lb dry pasta, any kind
1 ½ cup Alfredo sauce (small jar)
2 cups of broccoli florets
2 cups cooked, chopped chicken breasts
garlic powder to taste
salt and pepper to taste
1. Cook pasta according to instructions. 2. Steam broccoli according to instructions. 3. Drain pasta. 4. Drain broccoli. 5. Combined cooked pasta, Alfredo sauce, chicken breast, and broccoli. 6. Heat and serve. Flavor with garlic powder, salt, and pepper to taste.
Thank you Monique for developing the 10 Day Sickie Challenge! For more information on how you too can take part in this experience, get more information here.
Day 3: Eight Songs that truly mean something to me or touch me in some way. At first this entry was a little overwhelming, trying to think of eight songs by different artists that I wanted to showcase...and then it was trying to cut it down to only eight! So I went through my collection and these are the eight I wanted to present with this blog challenge.
In no particular order, I present... eight songs that speak to me.
I absolutely love this song! I can turn this on, sit back, close my eyes and breath... the song takes me away to a calm quiet peaceful place...
Kenny Chesney: Old Blue Chair.
This is definitely one of my favorite summer songs! Whenever I hear it, I start to smile and even laugh a little.
Craig Morgan: Redneck Yacht Club
This song reminds me that life is all a matter of perspective, we all have a purpose for being in this life... It just takes patience and an open mind to discover it.
Martina McBride: God’s Will
Who can hear this song and NOT dance or at least sing along?
Sister Sledge: We Are Family
This song really touches my heart... I don’t want to take anything or anyone for granted, because we are not promised another day. It’s important to me, that those I care about know that I care about them... I don’t want anyone who means something to me to ever wonder if I cared… This song means so much more to me since my Dad passed suddenly..
Garth Brooks: If Tomorrow Never Comes
One of my favorite songs from one of my favorite movies, by one of my favorite artists.
Ray Charles: Somewhere Over the Rainbow
This is a very powerful song… I want to live my life as though it were my last day on earth… I want to dedicate this song to my beautiful sister Jennifer... Living with no regrets, no fear.
Tim McGraw: Live Like You Were Dying
No matter where I am where I hear this song, it gives me a smile and makes me want to dance!
As you can see, it's been a while since I have been able to truly sit down and post. It's not that I don't want to, its just that by the time I have a few moments to share my life with ya'll - I'm too exhausted to think. Literally.
Please accept my apologies, but between fibro flareups, falling victim to a pain patch, my Mom being sick, staying swamped at work (got that promotion!), and fatigued beyond my wildest imagination... my cup is long past overflowing.
I will be back with ya'll soon (I hope!) or at least as soon as possible. Thank you for understanding and your patience.
And thank you, readers, for your continued support!
Many that know me know that I live with my Mom. Circumstances with a previous job and my health brought me back to my parent's home a few months before my Dad began getting sick. I'm very blessed to have been able to be there to help with him and support my Mom... It's also been good for me too as I have support on bad Fibro/Lupus days where I'm feeling puny.
Mom has been sick lately and I've been in a month long flare (which explains my silence on the blog), so we have been relying on each other to make it through. I am happy to be able to be home to take care of my Mom while she struggles with her disabilities, not only does she need me but it also gives me a perspective of what it is like to care for someone full time that has disabilities. These experiences have taught me a valuable lesson, not to take things for granted. True, my condition has already taught me to enjoy the small things, find joy in everyday activities, and to treasure each good moment I have... but I don’t take anyone’s kindness for granted now... On the other side, it has made me a little skeptical of anyone who willingly would take on a relationship with someone with chronic illness... why would you sign up for this roller coaster if you had a more sane option?
As frustrating as my lack of energy or ability to know how I feel later is frustrating to me, it is equally frustrating as a care giver. I hope that my spoonie friends do not take advantage of those who assist in maintaining the quality of their lives, despite illnesses.
This post is all flustered, fog is rolling in and the pain is getting to me. On my way to bed, have a blessed night.
Once upon a time, there was a nice woman named Amber. She grew up on a farm, took care of her family, and had a puppy she spoiled rotten. Amber had a good personality and was very friendly, she also had a killer pair of red ruby slippers. Amber had an enemy, like everyone else, a mean wicked witch who vowed to get Amber's shoes (and mute her personality) at any cost! Luckily, the evil witch couldn't come close to removing the spirit/personality of the girl completely so the witch decided to find a way to make Amber want to remove the shoes herself!
The witch was very mean and many people were afraid of her, but other people didn't want to believe in her because of how miserable she could make someone! The witch begins by casting a vicious fog over Amber's world, causing her to forget things like where she left her keys or what she was doing... This poisonous fog also can cause Amber to forget where she was going, leaving her sitting at a red-light or standing in a hallway feeling a bit confused.
The witch has many tricks up her sleeve, she has several flying monkeys that she can send out to torture poor Amber. Some of the monkeys are able to torment her body, swelling her joints, cramping her muscles, increasing her sensitivity to touch light and sound. These monkeys work tirelessly when they are out to serve their Witch.
The monkeys and the witch would work together, making Amber walk like a Tin Man... as forgetful as the Scarecrow.. and as emotional and anxious as a Cowardly Lion! There are even monkeys that give her infections, low grade fevers, and works steadily to weaken her organs and immune system.
Luckily, Amber had a Care Team that guided her along this path, doing their best to support her in any way they could. Without their direction and empowerment, Amber would have surely fallen victim to the Wicked Witch. The best part of her Care Team is that they remind her that deep down, she has everything she needs to truly be happy - despite the harassment of the Witch.
This story is about my journey with chronic illnesses. Fibromyalgia and Lupus are vicious diseases that seems to be trying to take away every sparkly thing that makes me so fabulous! With the support of my family, Care Team, and new online twitter/blogger friends, I know I will make this journey utterly wonderful!
The thing is, I become extremely emotional while I am taking Prednisone. I cry easily and over things that normally I wouldn't bat an eyelash at... Then again, the exhaustion of fighting to breath every moment of every day is probably catching up with me... I can't sleep at night and I can't get a break (of downtime) during the day. Please keep me in your prayers, this asthma is no joke.
