Antidote for Clinical Trial Recruitment

I was so proud to be asked to participate in the following article.  Kim at I Tripped Over a Stone and Kali at This Spoonie Speaks were also also participated, both are excellent advocates, please make sure and check out their blogs.  Please see what we had to say on the subject of clinical trials, and add your voice by adding to the comments.  The people at Antidote really want to know what you think.  I hope you will feel we were successful advocates for the chronic illness community.

Clinical Trial Patient Recruitment: Advice for Researchers, from the Invisible Illness Community

antidote article

…….”We spoke with three patient advocates living with invisible illnesses about how researchers — from those involved in study design all the way to site staff — can better engage them and their communities and drive clinical trial patient recruitment. Here is what they had to say:…………  click here to read the whole article

Interested in learning more about participating in Clinical Trials?  Click on the big black button on the right hand side of my blog and you can search for trials in your area.  There is never an obligation, accept or deny any trial you are matched with.

Advertisements

Mindfulness Monday – animals

0fca5c19-3f11-4116-ab27-5ad3bbe76253.png

 

“When I look into the eyes of an animal
I do not see an animal.
I see a living being.
I see a friend.
I feel a soul.”

~ A.D. Williams

sketch1517198773629.png

“Petting a dog can be one of the most
mindful,
peaceful,
and spiritual
moments you can have.”

~ Nicholas Montemarano

sketch1517550657565.png

“I have lived with several Zen masters –
all of them cats.”

~ Eckhart Tolle

 

*all artwork created by W. Holcombe.  Please do not use without permission.  All rights reserved.

 

A Weekend Getaway

Tuesday was my husband’s 50th birthday, and as I write this he is sitting on the floor putting together a Lego helicopter, he is so cool.

20180208_171512.jpg

Kiki thought she would help.

Early last week I realized that this was his 50th birthday!  Oh my goodness!  I hadn’t planned anything really.  Yes, I got him the Legos, and I planned to make him dinner, but that wasn’t enough for this milestone.  I was determined to do something special.  I was on a mission.

This mission was impeded by the fact that I can’t talk on the phone or drive.  Hmm, so what could I do?   What did I do?

First I decided I wanted to take him away, not far, just away from our house.  I wanted to spoil him, so I started looking for a hotel that also provided massages.  First I did a lot of looking on line and I even did a live chat with one representative, but the chat suddenly stopped, the hotel had to be called.  What to do?  At this point I was afraid I wouldn’t be able to follow through on my desire to spoil my husband.  Ah, but I have a friend who I chat with via Messenger almost every day, I asked if by chance she had the time to call the hotel for me, and she did!  She called and stayed on Messenger with me so she could ask me questions.  It worked out great!  It was obvious from the start that the staff at this hotel were incredible, not only was the girl at the front desk helpful, she actually went out of her way and went to the restaurant kitchen to see if they could accommodate my food requirements.  She was not asked to do this, my friend only asked if there was a gluten free menu available, she took it upon herself to try to make sure we would enjoy our stay.  She helped us book a Spa Indulgence weekend.  The girl at the spa was also amazing.  She helped us set up massages for both me and Stuart at the same time.  I wanted a special type of massage, Lomi Lomi, and she made sure I could get it.  (there is only one massage therapist who does this type of massage)  Again, my friend was amazed by how helpful these women were.  It was a very good experience.

20180204_105456.jpg

from inside our hotel

I also wanted to take us a little picnic, that way if we had the munchies during the night,  we didn’t have to go forage for food (or spend outrageous amounts on room-service).  Really, I just thought it would be romantic.  Again, an obstacle was in the way, I can’t drive.  How would I get the food for the picnic without Stuart’s help?  I didn’t feel comfortable asking my neighbor to take me to the grocery store, so I decided to look into having some groceries delivered.  I had a little difficulty because the first place I tried to order from had to call to get payment information.  I couldn’t give them my credit card information over the phone, since I can’t talk on the phone.  Bummer.  Of course, I didn’t find this out until AFTER I had done all my shopping.  pfft.  So I found another store that offered delivery and was able to place my order and have it delivered while Stuart was at work.  I did have to tell him we were going away for the weekend, but the picnic was a surprise.

I also got our pet sitter set up.  That was another issue I had to sort out.  Our normal pet sitter was going out of town, but she offered to take Kiki with her.  I know that my dog hates to ride in the car, she gets car sick…poor puppy.  So I called Kiki’s trainer (he helped her feel better about people coming in our house, it still bothers her, but she is much better about it)  He said he could take her for the weekend and I thought that would be the answer, until I found out how far it is to his place.  Kiki’s normal sitter’s trip would mean an hour or so in the car, if she stayed at her trainer’s it would have been a 45 min ride.  Hmmm.  Kiki went on a little trip with her normal sitter.  It all worked out, but it was an ordeal.  And I handled it all through texts, without help from Stuart.

Getting ready for this getaway took a lot out of me, but I’m proud that I was able to do all of these things without Stuart’s help.  He does so much for me, doing this for him meant the world to me.  He was pretty happy with it too.  I’m not even sure if he was happier about the trip, or the fact that I spread my wings and found ways to be a little more independent.

While planning this trip I was so worried that we’d get there and I’d start to feel bad and would ruin everything.  Of course, Stuart wouldn’t have thought it was ruined, but I would have.  It would have broken my heart.  As it turned out, I didn’t sleep well on Friday night and Saturday was a bit of a challenge for me.  I was very dizzy all day and simply felt, bad.  Truthfully, I wanted to stay in bed and sleep all day, instead I got up, had a good breakfast with my husband, and went to the fitness center and did all of my PT exercises.  I was hoping exercising would make me feel better, it didn’t.  We had talked about doing something on Saturday, either before or after our massages, which were scheduled for 2pm, that didn’t happen.  We just vegged and spent time together.  Then we had our Spa Experience.  oh my goodness….

20180203_134756.jpg

all ready for my massage

When we arrived at the spa we were taken to the dressing rooms and were given plush robes and slippers to wear.  We were given fruit scented water to drink as we waited.  It was so relaxing, I’m relaxing right now just thinking about it.  We were then taken to a darkened room and were given most delectable massages.  It was a dream.  Afterward, we were again given water in wine glasses and settled in to rest a bit before leaving.  There were also snacks and tea available if we desired.  There were these fabulous lotions there and I actually found one that I like.  Most things have way too much of a scent for me, almost everything I have is either unscented or has a lemon scent, this lotion smells like Fresh Melon.  Stuart loves it, and it doesn’t make me wheeze or give me a migraine…score!

20180202_174301.jpg

On both nights we had dinner at the restaurant in the hotel.  The first night we had steaks, they were delicious.  I felt that the vegetables had too much oil on them, but they were still tasty.  The second night we both had fish, it wasn’t as good as the steaks, and again I felt like the vegetables had too much oil.  They were both good meals, they just didn’t seem to be on the same caliber as the rest of the hotel.  Except for desert, I had chocolate crème brûlée, it was divine.  I saved some and had it on both nights.  Stuart had a salted caramel cheese cake, it was go good.  A bit too sweet for me, but very good.  Really the crème brûlée was a bit too sweet for me too, but it was oh so good.

There’s more to tell about this trip….but I might keep that to myself.  😉

This week I’ve paid the price for my excursion, but it was worth the pain and the dizzies.  Stuart is worth it.  It was nice to take care of my caregiver.

Sometimes, it’s just worth it.

 

Have you accomplished something that you didn’t think you could?

Do you sometimes think “it’s worth it”, when you know you are doing something that may deplete all your reserves and have you flaring for days?

 

 

Mindfulness Monday – Relax

tumacacori column

“Relaxation means releasing
all concern and tension and
letting the natural order of life
flow through one’s being.”

~ Donald Curtis

 

“Meditation is all about the
pursuit of nothingness.
It’s like the ultimate rest.
It’s better than
the best sleep you’ve ever had.
It’s a quieting of the mind.”

~ Hugh Jackman

 

“And sometimes
the most important thing
in a day is
the rest we take
between
two
breaths.”

~ Etty Hillesum

 

*photo by S. Holcombe, please do not use without permission.  (Tumacácori National Park)

Mindfulness Monday – Dizzy

dizzy winter

“Looking up gives light,
although at first it makes you dizzy.”

~ Rumi

 

“I am trying so hard to live in the moment and
enjoy it while it’s happening,
because it feels like a moving freight train that I just got on,
and I’m trying not to look back and get dizzy!

~ Laura Bell Bundy

 

“To be alive is to be dizzy
and not to know exactly where to go.”

~ Ander Monson

 

*image by W. Holcombe, please do not use without permission.

 

 

yeah, I didn’t get that done…

You may recall my post back in December where I talked about my fear of gaining weight.  I felt like I was handling that better, and things were going well.  I was trying to focus on nutrition and not on weight.  I have been trying to eat more mindfully, more intentionally (appreciating the food, accepting it’s nourishment, paying attention to my hunger cues….)

I say try on all of these because I haven’t been doing a very good job recently.

I promised I’d write a post about mindful eating last week, and well….. yeah, I didn’t get that done.  I started getting very obsessed with food this week.

The fight with food is strong in this one (ha, I sound like Obi Wan..or Yoda).

I was doing well when the scale was staying the same, and even went down a little.  Yes I still want to lose that last 10 pounds.  I think I’m more anxious about my weight because  I still have not gotten to the weight I want to be at, if I can get there I think I can keep it off, but why will these last few pounds not go away?  yeah, I know there’s more to it than that, but it’s very hard to voice what I’m feeling.

I know it’s not healthy to be so obsessed with my weight, but I also feel like if I’m not very diligent I will end up back where I was.  I really don’t want that.  I feel better about myself now (no, really I do!!).  I’m more confident when I meet people.  I have more stamina…..  I know how bad I feel when I’m bigger, both physically and mentally, and this is better.  Even though I’m obsessing about weight gain, it’s better than beating myself up over being fat all the time.  Hiding my body, not wanting to wear clothes that show skin, not wanting to be intimate, avoiding looking at myself in the mirror, cringing when I’d catch sight of myself in a store window…these are not healthy things.  My fear of gaining weight is part of that.  I don’t want to feel so out of control any more.

I am seeing a therapist about this.  After a friend shared that she had been seeing a therapist through an online counseling site, and she had a very positive experience.  With all the barriers I have trying to go to see a therapist face to face, I decided to give it a try.  I’m so glad I did.

I’ve been “seeing” my new therapist for a couple of weeks now, and by golly this woman has earned her money!  I was not in a good frame of mind this past week.  Food issues, anger, racing thoughts, insomnia…..mania.  Yep, I had a manic swing.  It wasn’t as strong as it has been, and I’m pretty proud of how I handled things, but it I was not my normal self.  I’m sure my new therapist didn’t think I was handling things very well when I bombarded her with emails for 2 days, but I just had a live chat session with her and it’s all good.   (by bombarding her, I mean that I wrote her 5 emails within about 3 hours, all of which were looooong.  If she weren’t my therapist I’d be embarrassed.  Okay, I’m still embarrassed)

I’m going to close for now.  I just wanted you all to know that, I’m not dead, I will eventually write a post about eating mindfully, and I am seeing someone about these issues of mine.

 

Have you ever thought about online counseling?

Would you try it, or not?  why?

I’ll share more of my experience soon…..no, really, I promise I will.

 

Mindfulness Monday – Snow

snow jan 2018

“Kindness is like snow –
It beautifies everything it covers”

~ Kahlil Gibran

 

“Sunshine is delicious,
Rain is refreshing,
Wind braces us up,
Snow is exhilarating;
there is really no such thing as bad weather,
only different kinds of good weather.”

~ John Ruskin

 

“Inner peace is a quiet
evening moonlight walk in
the soft falling snow of our minds”

~ Wes Adamson

 

 

*photo by W. Holcombe, please do not use without permission.