Sunday, November 13, 2016

November 2016





Happy November from Florida! It has been in the upper 70's, lower 80's consistently here. We've been to the beach twice in the month. My crazy husband even went into the water this past week (after working out) but the gulf is pretty chilly. I wore a jacket to the beach and didn't even dip my feet in. But it is gorgeous and relaxing and we love it.




November 7 was the day that acknowledges those who struggle with CRPS. Do I want to be part of that group? Nope, nope, no. But, I did wear orange and post a few things on social media. It happened to be a "doctor day" (most Mondays are days we go to the doctor) so we took this quick photo before we left that morning.

(I cannot figure out why the rest of the blog has blue font. I've tried repeatedly to change it to black and it just goes back to blue. Sorry about this.)

I am officially back off narcotics. I'm only taking one medication (Ambien) at this point because tomorrow I'm headed to my pain doctor. He agreed to try four medications that they are having success with in Germany. These aren't normally tried here in the US for CRPS but he agreed that I've been giving this my all. I'm tired of trying. I just want something to work and to move on with life. I needed to be off narcotics for two weeks before my appointment tomorrow. So after my sister & brother-in-law went home, I went from 8 pills to 0 pills within 9 days. My withdrawal wasn't terrible and I'm so thankful for that.


I don't like the taste of alcohol and it had been two years since I had it last.
But the hubby went to get me some Mike's Hard Lemonade two weeks ago.
It made me fuzzy, nauseous and overall didn't work great.
Plus I think my body hurt more after it wore off. Darn.

 Without pain killers, things have been rough around here. Ambien dulls the pain slightly and so I've been using that when things get at the point where I cannot function. And I'm thankful to have it. We are praying that this next treatment helps. It works with the glial cells



My inversion yoga trapeze

For the first two years of having CRPS, I really relied on doctors. I still trust them but I've been trying to keep on top of things now. Since Ketamine in January, I have completely changed my eating, read everything that comes out on CRPS including two new books this last month, joined encouraging CRPS groups and watched for people that were being helped, taken more vitamins & supplements, done more physical therapy, tried more natural remedies and...the newest thing...taken out as many chemicals as I can from my routine. Which means I've been brushing my teeth with a glass pot of basically clay & spearmint. Ha. Hair care, skin care, anything that touches my body or goes into the air - I'm trying to make it more natural. I don't think using toothpaste is affecting my pain but I am giving this my all. 

My food now includes: raw sesame seeds, cashew butter (made from roasted cashews & sea salt), raw pecans, spinach, bananas, strawberries (organic), raspberries (yum!) and chicken. The chicken is all natural, yada yada yada. I'm not loving that I'm eating chicken but I get hungry and it doesn't affect my body negatively. I did try spaghetti squash last week and that was a no. I am sure it would be great with pasta sauce though. I also gave apples a go but my teeth are too sensitive to eat things that hard. If you have any suggestions about what to add, feel free to message me. I'm also mixing in a "super greens" powder into water.



Remember when we had a hot tub in our living room? Yup, we tried that too.
(We realized the chlorine in the house was a BAD idea and returned it)


My husband hammocking which was cracking me up.
He is so giant in my hammock.

 Other happenings around the house include my husband laying pavers outside. Our villa has two "secret gardens" (i.e what our realtor called our small front & side yard). We has been collecting free pavers from Craigslist for months and I kept telling him to put off the project until autumn when the weather wasn't 95 degrees. Well, it is autumn. He has been working on it for weeks now and it is looking great.

He collected different sizes, textures and colors. And...the best part was that I "sat" (reclined) and told him which pavers would go where and he dry laid them. Then he dug up the yard and really put them there. My brain loves things that are spacial and it was such a fun puzzle for me. I love him for including me. He did all the hard work and I got to do the fun part. Here are some photos from last week but he has already put vertical pavers around the palm trees and made it into a raised bed.




My favorite part of the design was the vintage bricks that came from St. Petersburg and were made in the early 1900s. A few of them have the original thumb prints from when they were made. Swoon.



We have lived in this home for 1 year as of last week. Which means we have lived in Florida for over 18 months. The weather has been incredible, my doctors are amazing and this home has been great for us. I hope the next year will include me getting out more and perhaps some friends! And of course feeling much, much better.

My friends from PA have been incredible and even dressed in orange to support me from afar on November 7 but I miss actually doing stuff with people.


Some selfies from this last month:





 Some better days, some days that I wasn't doing as well.




Thank you to my penpal Megan who sent me some fun things from PA!


A throwback photo from 4 years ago when we were managing a retirement community.

 I hope everyone remembers to seek the small joys in every day. I'll try to give an update of the new medication when I can. :) 




Tuesday, October 18, 2016

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!


Wednesday, September 14, 2016

Neridronate for CRPS 1 & 2


I have been collecting information on the infusion called Neridronate which is being offered in Italy for CRPS/RSD.

This is the information I have collected. I realize it is in a horrible format and is hard to read and I'm sorry.


“As far as patients that have had CRPS/RSD for less than 6 months, the treatment is guaranteed to give patients a complete reduction in pain. In the last 4 years since the approval of the treatment, there hasn't been any surveys conducted on current patients because it widely used now for CRPS/RSD patients.”

UPDATE: I found one person who has had this treatment. One. It shouldn't be hard to find more people but I have searched and fell short. The one person is the author of CRPS/RSD Survival Guide and his name is Christopher C. Allen. We Skyped in October 2016 and he said it was a good thing to try for those that have had the disease for less than 6 months. Which means I am considering other things as I have had it for 3 years.)

There is a third party company selling trips for this treatment. The name of the company is called: "VENITALY - VCS Venitaly Consorzio Stabile".



The Facebook group "CRPS Treatment" was made because the University Hospital of Verona (AOUI) was getting many support groups for CRPS reaching out to them and they don't have the staff to follow overseas patients. Again, this is part of that third party.

This 3rd party sells an $11,000-$13,000 trip which will cover transport, hotel (any hotel up to 200 euros a night) & the 4 infusions. The infusions alone are absolutely NOT this expensive. This company has their first patient group coming over in September 2016 and has promised to post the information/results on their Facebook page (CRPS Treatment) but as of November 2016, I have yet to see anything posted. Their website is:
http://crps-treatment.com/.


The hospital has been doing these treatments for 4 years and do an average of 15 patients a week. (Which means it shouldn't be that hard to find more people who have had this treatment, right? But I couldn't find anyone on Youtube, social media or just with an overall Google search.)

Studies have shown that this medication (Neridronate) can cause necrosis of the jaw. I was told that this only happens with the oral medication and not the infusions but have heard that both oral and infusions can cause this. The known side effects of the infusions are: fever, joint pain. Again, this is only what I have been told since I have not yet spoken to any one who has had this treatment.



Hospital Website:
- Azienda Ospedaliera di Verona:
http://www.ospedaleuniverona.it/ecm/home


Doctor involved in the trials in Italy and the approval of Neridronate use in the cure for CRPS:
- dott.Massimo Varenna Publications:
http://www.labome.org/expert/italy/university/varenna/massimo-varenna-438627.html

Current doctor, who is responsible for the Rheumatology Department in Verona, and who will most likely handle the treatment:

- Prof. Maurizio Rossini - Contact information, curriculum, and academic work in Verona: http://www.medicina.univr.it/fol/?ent=persona&id=2341&lang=it



If you want to contact the hospital and ask if Prof. Maurizio Rossini is an actual doctor there, if the treatment is real, etc. feel free to contact them:




There was a trial in the US with Neridronate. I have found one girl’s blog who believed she had the medication:
BLOG: https://kathrynspages.com/2016/05/30/neridronate/

There are many questions. Here is the 3rd parties website FAQ for you to check out. Again, this is not the hospital – this is a 3rd party.


FAQ:
http://crps-treatment.com/wp-content/uploads/2016/06/FAQ01-Neridronate-for-CRPS-RSD.pdf



Here are a few more statements I have found:

* The treatment, recognized by the National European Health Authority, consists of 4 infusions of an hour each via intravenous of a drug called Neridronate.

* Everyone can benefit from it – even patients who have had the disease for many years – at any stage of the disease. It has been verified that in 100% of cases there is a reduction in inflammation and a permanent remission of the pain that goes from 20% to 100%.
* Neridronate in Italy is the therapy of choice in the cure against CRPS and it is practiced by the National Health Service on a large scale.
* In the US, Neridronate is still in its experimentation phase and probably will not be available for at least 10 years.
* Neridronate is used as therapy for both CRPS Type I and CRPS Type II.
* The Neridronate is essentially free of side effects.
* Once the therapy is administered, in the period of 15 to 20 days, a solution of the symptoms will begin up to complete recovery in two months’ time.
* Currently, the US is undergoing trials in which only patients that have recently contracted the condition.
* During the trial, the patients will not know if they have been treated with Neridronate or with a placebo (sugar pill, or false drug) and, if they did receive Neridronate, the quantity administered is not the same administered in the Italian therapy.
* CRPS Treatment is tasked with rendering the treatment available for all US patients, gathering requests, making appointments, and handling logistics.
* The therapy is conducted in the Rheumatology department of the University Hospital of Verona, guided by Professor Rossini, successor of Professor Adami, both authors of the studio that verified the efficiency of Neridronate in the cure against CRPS/RSD.
This is the 3rd party trying to sell packages for between $11,000-$13,000: For information contact us at +393357363517 (Cosimo), +39 345-716-0374 (Troy) or medical.team@crps-treatment.com indicating your contact information and hour of preference to be called at.





I reached out to Troy and he then sent me an email stating the following:


​The therapy consists of 4 days (4 sittings, 100 mg infusion per sitting). ​

The medicine to reach full effect takes about 60 days.




On a national scale, the Department of Rheumatology at the University Hospital of Verona (AOUI) is a national referral center for the treatment of CRPS / RSD; the head of the department which will follow your case is Prof. Maurizio Rossini, the successor of Prof. Silvano Adami; both of them where among the authors of the study on the beneficial effects of neridronate on patients affected by CRPS.



The University Hospital of Verona is considered one of the best state hospitals in Italy and in Europe, it's the hospital with the largest amount of operating rooms in Europe, about 2000 people benefit from daily outpatient services daily, including neridronate infusions.



As we said on the phone, these are the documents that I will need to organize your visit.



1. Medical records with diagnosis of CRPS/RSD condition

​;​

2. Blood analysis results with level of creatinine

​;​

3. Copy of your passport

​;​

4. Copy of ID or driving license that indicates place of residence in the US

​;

5. MRI of injury or affected areas​





Here is more about Neridronate in the US (study/trial): https://clinicaltrials.gov/ct2/show/NCT02402530

Here is what the RSDS.org website states about Neridronate: http://rsds.org/new-u-s-clinical-trial-of-neridronate/

The study is now closed.




Here is a clinical development of this drug when used for bone diseases with mention that it may be used in the future for CRPS:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3622395/


**After my studies, I am passing on Neridronate for now. I am going to try 4 medications that have been shown to be helpful to CRPS patients in Germany. These are mentioned in the book
"CRPS/RSD Survival Guide". If you would like to know about this treatment, feel free to message me or post in the comments. Thanks!