October Check In

October 15, 2016

 Hello & happy October!

It is almost 90 degrees and sunny here in FL and that is exactly the autumn weather I want.

We made it through Hurricane Matthew just fine since we are on the gulf side of FL. Before the hurricane we experienced red tide which is where an algae is in the water and basically kills a ton of fish that then wash up on shore. We stayed away from the beach for a good while because it causes respiratory issues and I don't need any more issues. 

The pain has been about the same. Some hours are better than others. I am thankful to have another treatment on the horizon. My pain doctor and I came up with a plan that is currently being used in Germany. I need to get off narcotics first but I have done that many times before. There should be no scary unplanned side effects but the doctor will be carefully monitoring my doses.

 About a month ago now we went yard saling. We are so blessed to have so many things close by here in Bradenton; it is so different than living in rural PA!

Books for my niece. I paid $2 for all of these. 

Rug cleaner, $7. My husband used this and then we sold it the following day for $30.
The cooler has built-in speakers. We purchased this cooler full of cleaners for $1. The people really, really wanted rid of stuff. We didn't really need/want the cooler but my husband wanted the stuff in the cooler. We will sell this on OfferUp soon.

This is pretty big (maybe 3' x 4'?) and is stretched canvas over a wooden frame. It was the end of the day and I got it for $1. I don't like the actual painting (sorry to the painter) but it is already a solid white and waiting for me to paint. I will probably try some boats and then donate it to Goodwill. But I feel like painting is something I love and I count it as physical therapy. Will it look great when I'm done with it? Nope! But I can try and it will keep my hands & arms moving.

A little sea shell book to be included with some shells in a care package.

And the steal of the day was this American Girl doll for $2. Yup. $2! I love her but she will be sold eventually. Her outfit was in the wash when I took the photo.

That is all for now. We have guests staying the week and so I'm trying to conserve my energy :)

Bye!

Neridronate for CRPS 1 & 2

THANK YOU to everyone who is helping answer questions in the comments. I'm eternally grateful to them.

**Please look at the comments on this post! There is some invaluable information that is being shared about Neridronate & other things that have helped CRPS. I know our bodies are all different and what works for some many not work for others. But please feel free to comment if you have found anything that you feel helped or hurt. Thank you all!

Update: I am using a 4 medication treatment that has been helping but have not gotten the Neridronate myself. If you would like to know about my current medications, feel free to follow along HERE and comment.

(I get no monies from this blog nor anything else I post about. I'm just a 37 year old woman who was diagnosed with CRPS type 1 three years ago after several knee surgeries)

Please know: This post use to contain a lot of information. I was messaged by that third party to delete that information.

You can find out how to get the infusions by looking at the comments.
 
Thanks!

September 2016

Happy September. It is still warm here in Florida but the Gulf is turning slightly too cold for our liking. Could we celebrate Labor Day and then just fast forward to Memorial Day? I like when it is humid, sunny and 90 degrees out.

 We didn't do anything special for Labor Day. My husband sang at a retirement community and I'm sure I was in bed for most of the day. But honestly I don't mind.

 We also had a hurricane make its way through FL. We thankfully only lost power for several hours and it was late at night anyway.

 Our front yard turned into a shallow pool and we had some water come into our lanai. We are thankful it wasn't anything more.

 I have made it to the grocery store twice in the last three weeks. My husband is getting MUCH better at choosing fruit since we are both still eating quite healthy. Fruit, veggies, seeds, nuts, local raw honey and organic chicken. The hubby also eats eggs and grass fed beef. I have absolutely seen a difference in the level of pain in my body. I still have that searing nerve pain but the pressure in my joints has been better.

I'm so thankful for this electric stimulus machine.

 I have been playing around with adding a food back into my diet about once a week and seeing how my body responds. Grapes were a major no. They caused pain. Cashew butter was absolutely a YES! Holy cow, how amazing is cashew butter? I eat it straight out of the jar. Potatoes were a yes and caused no pain. Except without butter or cheese, potatoes are quite dry. I'd rather eat pecans which is what I'm doing. But it is good to know that I could eat a potato without adding pain if I wanted to. I tried wheat this week and that was a no as well.

Headed to Wal-Mart in my new (to me) sweater that cost just 33 cents- score!

My husband doesn't have too many more projects at our home which is fine by him. I added this little sign "We are all broken" to the top of my dresser. I collect broken shells and swap them out every once in awhile.

And now for some dog photos from the last month or so.

We are checking into a new(ish) treatment for CRPS called Neridronate. After Ketamine in January, I'm leery to try anything. However I will speak to someone this coming week who has had Neridronate. It is being used in Italy and has been used for 4 years to treat CRPS.

Past that there really isn't anything too thrilling to report. I have only had two panic attacks in the last several weeks though they were back to back.

Every once in awhile I take myself off narcotics when I feel they aren't helping as much as they should. I have my doctor's permission to do this and it will be this week for as many days as I can stand it. I have a doctor's appointment tomorrow but then the week is open which means I can stay in bed while my body hates me.

Thank you all for your encouragement & prayers.

August 2016

 Happy August!

I will get all the dog photos out of the way. I have never been an animal lover like my sister or husband but I am in love with our little dog. She is sweet and has done amazing at transitioning into our home.

 Her previous owner named her Cannoli and the rescue called her Callie. Both are adorable names but she responded to neither. I still call her them once in a while to see if she responds. Nope.

My husband has always wanted a dog called Fred. But we have a girl dog. And so on her paperwork she is Frederica. But we call her Fred. Mostly we call her Sweet Pup or Good Girl though.

 She sleeps in my bed and does so well. We have her bed in my bed but she snuggles with me in the mornings and hangs out with me during the day. She loves my husband because he gives her treats when she sits & he takes her on long walks which she adores.

She likes tucked in and she LOVES her dental bones. The dentist said they are great for plaque but it takes her days to actually chew one so she just carries it around the house with her.

We didn't set out to spoil her but she is just so dang cute.

Also happening these past few weeks...We got another couch. Ha. I think this is the 8th couch since moving to FL. And I think it will be our last (did I say that with the other 7 couches though!?!) We have realized my hips need to be completely flat to help with the pain. I knew that but I kind of thought the last reclining sofa was good enough. Nope. Completely flat. We have made money on the couches we have purchased & sold and so although this one was $400 from Craigslist, we are still "up" in the couch category.

Ikea Kivik Sofa & Chaise

Around the house...the house is basically done! I know I took "before" photos of the 2nd bathroom but I have somehow lost them and so I will just use these.

It was the last room of the house to be complete which was fine because it was overall in good shape. We hadn't planned on tearing out the vanity but my husband found a pedestal sink for $15. The toilet & shower/tub were in great shape. So he ripped out the little back splash piece and the vanity.

Then he fixed the floor which Home Depot thankfully was still selling and fixed the walls and painted. I flip flopped between deep teal and navy but ultimately it is a small bathroom and we already had light blue paint. A Home Depot "oops" paint for 50 cents was dumped into the light blue and we came up with this lovely color.

Pedestal sink: $15
Extra Tile & Mortar: $20
Mirror: left behind by our sellers
Extra plumbing pipes & supplies: $30 (pipes are pricey things!)
Medicine cabinet (shown over the toilet): $10 at a yard sale
Glass knobs: $1.50 each on Amazon and left over from another project
Shell light: free
Paint: 50 cents
Molding: found by the side of the road so free!
Shower curtain & rug: found on the side of the road so free!
Dolphin faucet: $50 - we used our anniversary gift money to pay for this
(thanks Mom! thanks Li & Dutch!)

 Overall it was a fairly inexpensive re-do and I love the results. We may look for another mirror (at a yard sale if we ever do those again (stupid body) or on the side of the road) but that is a thing that can be switched at any time because this one is just fine for now.

 The other side of the bathroom is just a blank wall and the door which I clearly didn't think interesting because I have no photos of it.

Other happenings:
We had friends stay just a few miles away last week. Thank you for coming to visit Anna Maria Island! Thank you for driving the insane 40+ hour round trip to see us! We loved seeing you and spending a couple days with you on the beach. I know you will be back next year and cannot wait!

My husband on his float.

 They stayed at our friend's condo. We found her condo when we did a home exchange many years ago. Franca has been awesome with renting to us when we vacationed here, then renting to my mom & sister and then my mom last year. Now Kristen & her kids got to use this condo.

My husband checking into the condo before Kristen & the kids got there.

From left to right, back row: Me, Kristen, Abby (a friend of Taylor's), Jessica, Taylor
From left to right, front row: Jaime, Carter & Megan

My husband pretending to do gymnastics on the beach

Abby & Taylor - REALLY doing gymnastics!

I was down for a few days after but I loved seeing them. I have really missed having friends and these kids are awesome.

Thank you Megan for the lovely aqua vase with the shells that she gifted me before they made the big drive home. I love it!

My sister also sent two fun packages this week. More homemade cards which I not only love to get but I love to send to others. And a fun little cow squeak toy for Fred.

I went to the doctors twice this past week. My pain doctor is awesome and I am blessed to have him. My right foot including my big toe stays numb about 90% of the time. I have gotten use to it and it doesn't hurt. He is also referring me to another doctor to see what he thinks. I really don't want more testing because 1. They are expensive and 2. They require me going to more doctors. But we will see what they say.

Just a random photo because doctor stuff is never interesting.

My other doctor appointment was to the psychologist. He is a new doctor and this was my second appointment with him. He is also amazing. My panic attacks and anxiety have decreased and I am putting the little tricks into practice that I am learning from him. I have only had 4 "episodes" this past month of feeling like I cannot breathe and having that dreaded heaviness on my chest. That is amazing compared to last month.

A random squirrel hanging on a tree outside our villa.

My diet continues to be raw fruit, raw veggies (though less veggies than fruit), nuts and seeds with some organic chicken thrown in. And I am having less overall joint pain. Do I miss pizza? Not really but only because I know it will cause pain. I do miss black olives though. And I may add those back in at some point and see how I do.

We found this "It Works" tape in someone's "trash" (a bunch of left over yard sale stuff set by the side of the road). It was sealed and so I picked it up. It works amazing at compressing my fingers when they ache and I want to chop them off. I don't leave it on much past my fingers turning colors but it helps.

I still have pain every day and it is shocking sometimes. I am so aware of my body. I can feel the outline of my hands and feet and I think I can sketch the nerves inside them. I am grateful that my head doesn't hurt and my back is usually okay. It gives me a point of reference because I cannot remember a time when my arms and legs didn't hurt. I know it in my brain but I cannot remember what it feels like. I tell myself "when is the last time you thought about the tip of your nose" and the answer is almost never. My limbs use to be like that. I didn't think about individual toes or the backs of my knees which are now on fire. I was diagnosed 3 years ago with CRPS. Not that long ago considering I am 36. But the pain takes over and is very isolating.

Think of when you have a bad headache (which thankfully I don't get). You are so aware of your head. You press it, you take pills, you pray it goes away as soon as possible. That is what happens. I'm so aware of my limbs. I have my husband lay on top of me, I try just about anything to stop that pain. Or override it by causing more pain. He presses the parts that can withstand touch and I tell him to press harder. He says he is scared of breaking something. Break it, I say. But he doesn't.

I plan on putting this on the back of my door so it can give me hope through the bad times.

When it is at its worst I give up. I don't try because trying means moving and I don't want to live at that point. This is not a cry for help. But I get why people cut themselves. I get it and I am so sorry for everyone who has pain this deep.

But right now the medication is helping and my pain is lessened. I have hope again.

I wish you all a day that is full of little joys and smiles.