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
Today my brother Johnny took us out to the water park for his birthday. It was so much fun!! Jennifer, Johnny, Missy, and myself all spent the day at Lake Winnie. The amusement park is local and one of our best kept secrets - especially since they have opened up the water park addition!
The waterpark is amazing, it has slides galore and a crazy river (like a lazy river on steroids)! That's where Jen and I stayed all day. Don't get me wrong, I have always loved waterslides... but I was really scared that this would happen (see picture).And I didn't want Missy to see me get stuck in a waterslide... And I didn't want the evening news to witness my rescue by the local fire trucks. But that being said, we had a blast!
Thanks to the amazing offer that Jennifer found on kick@$$ sunscreen (SPF 50, trowel not included) we were only mildly burned. It was the first time since getting my pump that I have spent the day monitoring the time, watching my sugars, and attaching it every two hours for at least fifteen minutes to keep my sugars in range. I have to say that it was a huge WIN
Of course the hardest part of managing my pump while swimming was keeping an eye on the time. But I seen this case on Groupon about three weeks before and it guaranteed to keep a smartphone dry even when submerged in the water. It works! Thank God! Which was awesome, because I set the alarm for two hours, locked my pump, meter, and stuff in a locker and swam my heart out until the sound of the alarm pulled me from the crazy river. I don't remember the name of the pouch right off the top of my head, but I got it super cheap by using groupon.
Considering the last time I spent a lot of time in the sun I was completely roasted and this time I had even more insulin and medication in my system (thanks to my new diagnosis and pump) - and this time I walked away with a touch of pink.... this was a huge success!
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.
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 :)
Well I am over feeling betrayed and now I'm just kind of pouting a bit about having to find a new doctor. Since it has been a while since I made my own selection, only thinking about my own health, I have been researching things to keep in mind when making the choice. Leave it to MedicineNet to have the best article! The article was written and edited by Medical Doctors, which explains why they thought of things I hadn't even considered. My current doctor did make a recommendation for the new physician joining the group, but I haven't made up my mind yet. I would like to remain within the Erlanger Health System, because so many of my Specialists are within the system.
Which hospital(s) does the doctor use? Are you comfortable with the possibility of being treated at one of these institutions should the need arise?
Where are routine x-rays and laboratory studies performed? Can these be done in-office, or will you have to go to an outside laboratory?
How long must you wait for an appointment after you call? Can you be seen on the same day if you have an urgent need?
Who covers for the physician when he/she is away? Whom should you call if you have a problem after-hours? If the doctor works in a group, are you comfortable with being seen by one of the practice partners?
Does the physician frequently refer patients to specialists or does he/she prefer to manage the majority of your care themselves?
The article brought up some good points, but I haven't made up my mind yet what I'm going to do.
You can check out the article in its entirety, here.
Anyone who knows me will tell you that I am constantly muttering about the difficulties of finding the right sunscreen for the summer months. Not only does the medication for my condition make me sensitive to sun, but I start sweating like nobody's business as soon as I step foot in the brutal rays of the sun.
This summer I am trying something new. Banana Boat Clear Ultramist UVB SPF 30 Continuous Spray Sunscreen. I found mine at Walmart, but I think you can get it anywhere. Some people mock and aggravate me about the price I pay for good sunscreen, but the way I see it - it is definitely worth the price. Some say that we shouldn't use are-sol spray sunscreens, but I am cautious about not breathing it in and its the only way I can make sure that I get every inch of my (exposed) body. After doing some research and talking to my physician, I am learning that if you have the UVA and UVB protections you don't have to splurge as much on a higher SPF. This is really the first summer that I have used a lower SPF so I was curious about how it would work out.
Luckily, I had a plan! I went into the events of the holiday making sure that I could keep an eye on the clock. While it may sound a bit dull, I reapplied the sunscreen every 90 minutes. Yes, I climbed out of the pool and dried off every 90 minutes, spraying myself with the sunscreen and massaging some onto my face. The coolest part was that my 5yr old niece climbed out of the pool with me - and I went ahead and slathered her up too. It's never too early to teach sun protection and skin care!
Well guess who DIDN'T burn!! That's right, ME!!! In the pool for hours during the hottest part of the day and while I did get a little bit of color - no lobster-red burns for me this year!
This morning started out to be a great day. It was beautiful outside, I woke up early on my own, was feeling good, and thought I would be early for work. I needed to make a quick stop at a Walgreens, and on my way out... This happened.
Yes, I fell. On the sidewalk. At a public store. In front of God and everyone. Except for me, it wasn't my shoes to blame! (In The Birdcage, the character that fell says that shoes make him fall down.) At first my pride was hurt more than anything else, I scrambled to get back on my feet as quickly as possible. But this really nice lady was trying to help me up and instead of grabbing me she yanked on my pants which slid then down my hips to flash the security camera.
I got back on my feet, trying to save face and willing myself not to start crying. Taking a quick mental stock, I confirmed that nothing fell off of me and I didn't see or feel any bleeding. I limped to my car, in a hurry to get somewhere more private to catch my breath and Miss Jubilee wouldn't start. Thankfully, I pulled myself together just in time for a truck of older gentlemen to pull in next to me. They worked for about thirty minutes trying to jump me off, but had no success.
Even with everything going on, I was thankful to be so blessed. Yes I fell and embarrassed myself, but I wasn't badly hurt and it wasn't raining so I didn't get wet. :) Yes my car wouldn't start, but God sent those two very nice men to try and help me, which was reassuring. Plus I was somewhere safe when it happened. I was in a parking lot with video surveillance, the manager said my car could stay there for a while until I could get it fixed. Thankfully, it was the starter and once Bubbey came and replaced it, Jubi started right up. :)
Towards the end of the evening, even though the painful consequences of my fall were starting to stiffen my joints and ache beyond my imagination, Mom reminded me that everything would be ok... and I felt her love as though she had just hugged me. Rainbows have always been special for me, magical and made me smile... Mom shared my excitement at catching one of these beautiful weather miracles... It never fails - when I need her the most, Mom seems to be there for me... The rainbow that streaked the sky tonight was stunning, bold, and more colorful than anything I've seen in weeks....
A woman named Amber has fibromyalgia, lupus, and several complications of that combination. She has a stressful job where she is responsible for numerous things. Amber also has a sick parent who she is taking care of, with the assistance of her sister. Amber and her family live in Tennessee, which is having a major shift in temperatures and weather - dropping from 80* one day to 45 at night, mixing in some cold rain and high winds. What happens next?
Did you guess a series of intense asthma attack that propels Amber into a very rough chest cold and laryngitis?
I didn't either, but that is what happened.
The string of asthma attacks will take a few days to get over, but thankfully I have my inhalers, a nebulizer, a steroid refill, and some mixed Albuterol solution.
Sometimes being a Spoonie is tough, looking around your house at the embarrassing collection of medical equipment and medications... Other times, like right now, it is like having access to your own private pharmacy! Which has definitely saved me a ton of money on copays!!
Don't worry about me! I'll be back to blowing down houses in no time :)
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!
I had the best time with my brother today at the drag strip! My sun glasses worked great, I stayed hydrated, the breeze kept me cool, and the cars were smoking hot and mighty mouse fast! About four hours into it, I realized that maybe my skin wasn't having as much fun as I was... as my sunscreen had already thrown in the towel! Arriving home that evening, I realized what the intense tingling tightness meant... I was burned to a crisp. I have burned before, but never like this!
After a few days of taking Tylenol for the heat/feverish feeling/pain, rubbing on cooling aloe gel (that a friend suggested I keep in the fridge that made it heavenly) and napping as much as possible I am feeling better. However, I am definitely making plans to be better prepared before my next outdoor adventure!
If you see me out on the drag strip go ahead and wave, I'll be the chick under the umbrella that is using a trowel to apply sunblock!
"The greatest mistake you can make in life is to be continually fearing you will make one."
- Elbert Hubbard
I have always been a cautious person, doing my best to think out consequences to ensure whatever decision I am making is a 'good' one. That has gotten a lot worse since my diagnosis of Fibromyalgia. Now I tend to factor in the emotional or muscular backlash of what could come next and how that factors into a possible flare-up. Like many with Fibro, I used to go wild on good days, over-extending my body and energy so that by the time night fell, I was completely miserable and hurting. I don't do that anymore, I am still learning proper management of my resources so that I can have as many good days as possible.
There have been days where I miss the freedom of random selection, not having to worry about any kind of triggers that could slow me down days on end. Other times I appreciate the way I take the day minute by minute, enjoying the small things that so many take for granted. I wish there was a way to do both, appreciate each moment yet still live like there is no tomorrow. Perhaps, with this blog's help, I will find that balance.
