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!
No matter how crappy I am feeling or how exhausted I am, I always take a few minutes and do my daily clicks. I'm torn between believing that these daily clicks make a difference and that its just some kind of guilt-triggered-spam that tricks us all into looking at advertising. Either way, I always feel a smidgen better after going through my clicks. And on no-spoon-days, I'll take that smidgen of improvement happily.
It used to take me a little longer because I had to jump from bookmark to bookmark to bookmark - but now the actual layout of the page makes it so much easier! Are you interested in clicking some free help their way? I have laid out some simple step by step instructions :)
1. Go to THIS PAGE 2. Look for this logo on the upper left hand side. 3. Look to the right, one icon at a time, and it shows all the other pages you can go to make a difference just by clicking! Its totally free.
4. Under the row of icons, you will see a bar that says something like "click here to offer..." whatever page you are on. Click that bar. That's it! You just helped someone else :) This is an example of what the page will look like when you click on the different sites you can help. This picture may be fuzzy, so please feel free to click on it to make it bigger so it will be clear. :) Oh and my paint program skills aren't that great lol but hopefully it will help you get the idea that I am talking about.
I know this sounds cheesy but doing these daily clicks - even on days I don't feel good, especially on days I feel really bad, help me feel a little less sorry for myself... because I am taking a moment to do something for others. That helps me give myself permission to rest as much as I need to, because I have done what I can do for others.
What’s the one thing you’re most thankful for? Write a list of three things that you’re thankful for, excited about, or inspired by.
I am thankful that I have a family who loves me no matter my condition.
1. I love that my niece, Missy, can spell my name independently and knows my phone number by heart! She inspires me to find new reasons to smile each day and just embrace the silliness of it all.
2. I am excited that I am getting one of those cool gel pillows for Christmas this year! I freaking love my sister's and cannot wait to get it!! I really think it will help with my night sweats and help me rest better.
3. I am in awe of my sister and how creative she is. She has the ability to pick up new skills, create stunning crafts out of gaudy trashy looking items... She has no idea how amazing she is. I love you Jennifer!!
Nov. 27. Black Friday and Holiday Shopping - In preparation for Black Friday holiday shopping, give some advice on how to survive the long lines and packed stores. How do you find the best bathrooms? How do you stay comfortable on your feet? Give us some tips before heading to the stores. Order online! Or do what I do - offer to babysit so your friends can go shopping, then slip them some cash and your list. :) We can usually get the children to enjoy a cuddly fun day of movies, books, snacks, helping cook, and decorating the tree... Which is much more fibro-friendly than fighting it out in the mall at 4am.
Nov. 23. Teaching the Teacher. What’s something you taught your doctor related to your health? When I was first diagnosed with fibro/lupus, I kept a detailed pain journal that included everything that I ate, done, felt, and even watched on tv! (Yes I was one of 'those patients'! lol) I was able to show proof that pain elevates my blood sugar - drastically, but by increasing my water and laughing I can ease my pain.
Nov. 19. Top Three Tuesday. Give three pieces of advice you would give to a caregiver. I am also a professional caregiver, and I train others to take care of our patients. In my personal life, have been on both sides of the care giving relationship. I took care of my best friend and both of my parents before they passed away. And I have days where my parents - now my sister and her husband take care of me. So I think that I have a slightly different perspective than most spoonies. The first piece of advice I always give someone new is that someone's condition or illness is -not- their responsibility. Providing care is a big role to take but if the person becomes sicker it is NOT because the caregiver is doing anything wrong. Sometimes things will get worse, sometimes things will get better. I feel that sometimes caregivers are bullied into voicing a rose-colored-glasses view on things so no one will think they are doing a poor job. The second piece of advice I usually give is to carve out time for themselves. Not just 10 minutes for a hot shower or a cup of coffee, but some real time. An hour - at least. The caregiver needs to be able to rest, read, drink a cup of coffee - do whatever he/she needs to recharge. The last piece of advice I tend to offer is to have a notebook on hand. Writing down questions or odd symptoms can come in handy at doctor appointments - especially if the caregiver is not the one taking the patient to the doctor. Also, during doctor appointments, notes can be taken as well to help communicate with the entire care team.
Nov. 6. Say WHAT?! What’s the most ridiculous thing you’ve heard about your health condition? Was there any context? What did you think at the time you heard it – and what do you think of it now?
The very first Rheumatologist that I had an appointment with made a shocking discovery of my 'situation' (as he called it). I was in my mid-20s and unmarried, no children, and working full time. I was having a great deal of "residue pain" from a severe case of the shingles (that I developed two years before). This Doc explained that my 'situation' was because I was single and did not have any children yet. That my body was 'wanting to become a mother and spend my time at home caring for children and a husband' instead of 'wasting my life at a job'. -Spoiler Alert- He was a bit of a jackass, and I told him as much! That's when he enlightened my poor not-made-for-thinking feminine brain to the theory of my body rebelling against me in this way because I was denying myself what 'should matter most'... At that point I wasn't angry at him anymore, I wasn't offended or insulted... I felt so sad for him and his family... and God help, his children.
Of course I've also had other wild zaney diagnosis/opinions given to me, but this one was definitely the one that leapt to mind when I seen this blog prompt.
Getting back on topic here, after all of my crazy appointments I can definitely appreciate the episode of The Golden Girls in which Dorothy has Chronic Fatigue Syndrome, Sick and Tired, Season 5 Episodes 2 and 3.
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 :)
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.
This morning I found out that my doctor is leaving the practice, moving to another office across town. When I asked if she was taking patients with her, she said that I needed to stay with the existing office... She had a really good reason - she explained that with my Specialists in the same building/office, that I needed to remain there so it will be easier for them to work together on my case.... But why do I feel so abandoned?
One of the reasons that the last couple weeks at work have been so crazy hectic is because it is the time of year again for the Tennessee Strawberry Festival. The entire town gets decked out, people are scrambling to put together floats, baking their hearts out, kids are practicing for the parade and everyone is so freaking excited!! Well everyone except me. haha Ugh at work it is a bit of a scheduling nightmare.
Don't get me wrong, its a great tradition of family fun! My childhood would not have been the same without this week of wild craziness in May!! The whole festival is packed full of fun events carefully planned out by the Chamber of Commerce - there were free concerts (all kinds of music), booths that are selling clothes, all kinds of fair style foods (funnel cakes- yum!), interesting jewelry, and almost anything you can find on Pinterest to sell. I'm not knocking those who are going craft crazy and selling the beautiful items they created - because I respect anyone who puts that much time and energy into something creative. :) I'm the kind of person who looks on Pinterest and thinks "Oh I hope someone is selling this at the court house this year."
And I was right!! :) Jennifer and I both got these adorable purses that are super cute and summery!
For example, I love love love these foamies! And while yes, I know how to crochet and yes I enjoy doing crocheting -- I'm not going to actually create these adorable little things. Partially because I am a bit overwhelmed at work and partially because of my joint pain and muscle strain... but also because I'm a bit on the lazy side during the summer heat. :)
Hmm maybe someone will be selling them at the festival next year?
A family had twin boys whose only resemblance to each other was their looks. If one felt it was too hot, the other thought it was too cold. If one said the TV was too loud, the other claimed the volume needed to be turned up. Opposite in every way, one was an eternal optimist, the other a doom and gloom pessimist.
Just to see what would happen, on the twins' birthday their father loaded the pessimist's room with every imaginable toy and game. The optimist's room he loaded with horse manure.
That night the father passed by the pessimist's room and found him sitting amid his new gifts crying bitterly.
"Why are you crying?" the father asked.
"Because my friends will be jealous, I'll have to read all these instructions before I can do anything with this stuff, I'll constantly need batteries, and my toys will eventually get broken." answered the pessimist twin.
Passing the optimist twin's room, the father found him dancing for joy in the pile of manure. "What are you so happy about?" he asked.
To which his optimist twin replied, "There's got to be a pony in here somewhere!"
Dad used to call the bathroom the 'Royal Reading Room'. It always made us laugh and drove Mom crazy! He used to say that the bathroom was the only place he could go read in peace, without being asked to do something or get something. Seeing this picture today, brought that back - and I laughed. I don't mean I giggled, I mean I belly laughed... remembering Dad's face when he would say "Well I'm off to the R.R.R." and Mom's face as she rolled her eyes and barked "Mark!" I miss them. I am so thankful that they instilled on me the value of reading... How adventurous it could be, how the entire world opens up when you crack the pages of a book... Mom and Dad both read to us (Jen and I) - whatever we wanted to read, whenever we wanted to read. It didn't matter how many times we had read the same book or how much they disliked the book... For me, it was books about adventurous romances- like Lancelot and Guinevere, or Robin Hood and Maid Marian. I fell in love for the first time with Little Women and grieved for Luke in The Prince of Tides. Even as an adult, I cannot help but be hypnotized by the retelling of Arthurian Legends or bewitched by Grimm's Fairy Tales. And today, I am able to enjoy these digital classic on Amazon's Free Kindle Applications. For that, I am very thankful! :)
This morning I am thankful for Facebook. Not only has it allowed me to catch up with friends from my childhood, but it has also helped me communicate with other spoonies so I feel less alone. I also post a lot of pictures that make me laugh or inspire me.
One of my favorite pages is When the Dinner Bell Rings. I'm not sure who does it, but it haves amazing DIY type things. From how to whiten your nails for the holidays to easy crock pot recipes, it is definitely one page I look forward to seeing each day. I have used some of their yummy recipes when I am having a fibro day and very few spoons to spare. If you are on facebook, please take a minute and check out their page.
Today is an extremely difficult day for my family. One year ago today, my Mom passed away... While the last 365 days have been the hardest of my life, today I have reached a place of semi-acceptance... where I can honestly say that I am so thankful for the 32 years I had with her. The last 6 years we became best friends, was a blessing that I didn't expect but am no less grateful for. My Boss said something a while back that is really staying with me today... Only a great love, deep respect, and an amazing person can leave a painful hole in someone's life like this... He is right, I miss her more today than I ever thought possible... I love you Mom, yesterday, today, and always.
Normally, by this time of year, I would be calculating how many days of kerosene we would have and trying to figure out, according to the weather predictions, when I would need to get some more so we didn't risk running low... The fumes of the kerosene always messed with my asthma, sinuses, gave me migraine headaches, and kept me up at night with worry that it would catch fire to everything else... Don't get me wrong, I was thankful for the kerosene heater, because it helped Mom and I stay home as long as possible... But today, I am thankful to have central heat and air available. I'm so thankful today to God for providing me with a weather proof shelter, a comfortable bed, warm clothes, good food, and a loving family - that even though we fight we are still each other's family. And that means everything!
Today, and every day, I am thankful for my extended family. Losing my parents has been the hardest thing I have ever gone through and I fear, will ever go through. My Grandmother, Aunt, Uncles, and close Family Friends have been amazing at supporting me through everything - even though they are also hurting. Sometimes we get lost in our own grief and don't see the pain of others... I am so very thankful that they seen me... I know I have shared this video before, but.. today, it is keeping me company in my head. I wanted to share it here. Please pay close attention to the lyrics.
When I was first diagnosed with an illness, I was in high school, Poly Cystic Ovarian Syndrome. We didn't the internet back then and my doctor was more focused on talking with my Mom than helping me understand what was going on with my body. Then in 2006, I was diagnosed with the flu, shingles, and a few other things... After numerous specialists and almost two years of researching, I was diagnosed with Mixed Connective Tissue Disease, which (according to my doctors) is a combination of Fibromyalgia Lupus and Arthritis. But this time, I wasn't alone. I had support from my family and friends, as they educated themselves about my condition. I also had the group of spoonies I had met online, twitter, facebook, online chat rooms, blogs, podcasts, forums, support groups.... I wasn't alone! And that made all the difference.
