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

#HAWMC Day 15 – Favorite Health Advocate

Today is Day 15 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Time to spread the love.
Shout out all your favorite Health Advocates!
Make sure to share a few sentences explaining just how grateful you are for them.

your-voice

image source click here

Listing all of my favorite Health Advocates would take up a book.  There is no way I can give a shout out to all of them in this tiny amount of space.  When I first read this prompt I thought it read that I was to give a shout out to my favorite health advocate, and I thought that was impossible, but I thought of a way to do it, kind of.  Listing all, really is impossible.  Please see my post from Friday, Friday Follow, for a list of many of my favorites; there are still more, but that will give you a good start.  Today I’ll just list a three blogs I’ve been following the longest that I feel are still doing an exceptional job.

Denise is an advocate for Meniere’s Disease, hearing loss and service dogs.  She tells her story with wit and flare in a weekly post on her blog Hearing Elmo.  There you will hear about her life with Meniere’s Disease, working and studying in academia, her family, life with a service dog, and her Faith. I’m proud to call her friend.

Madelyn writes at ADD…and so much more, as you can tell by the title she is an advocate for ADD…and so much more!  Madelyn’s blog is a place for her to “let you know about new ADD opportunities and to post all kinds of seemingly disconnected content.” This blog is intended to help: anyone with an Executive Functioning Disorder.  I don’t have ADD and I get so much from her blog.  She is an ADD coach, has won a number of awards, and I think she’s just the bomb.

Kara from Polishing Dookie does an exceptional job making people feel comfortable with her illnesses with a sense of humor and intelligence that keeps you reading.  Her tag line “Making the most of the sh*t I’ve got left” shows her sense of humor about her IBD (Irritable Bowel Disease).  Kara takes you on a ride that is her life, and you will be happy to join her.

If you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  Don’t forget to Like Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

#HAWMC Day 7 – Starting Advocacy

Today is Day 7 of #HAWMC (WEGO’s Health Activist Writers Monthly Challenge).  The prompt today is:

Was starting your advocacy journey a hard decision? Were you anxious and hesitant or were you excited and ready to share your story? Tell us how you chose to start advocating for your condition.

caring-hands

The start of my advocacy journey for Meniere’s Disease and other chronic illnesses is kind of a long story.  First I found out I am allergic to wheat and suspected to have celiac disease.  Here, let me ‘splain….I had been generally sick for a long time when I found out I’m allergic to wheat, so I stopped eating wheat.  I started to feel a whole lot better, but I was still getting sick sporadically, so I decided to stop eating gluten.  My doctor then suspected that I may have celiac disease.  I was given the blood test but tested negative, I was given it again and tested positive.  This provided no definitive results, so I would need a biopsy from my small intestines.  However, the only way for this test to work was for me to start eating gluten again for a month or two.  I asked what the treatment was if I was found to have celiac disease and it was a gluten free diet.  Well I was already eating that way, so I decided to just keep on a gluten free diet instead of having the test.  Maybe I’ll have it one day, but probably not.  The doctors are pretty sure I have it due to the last blood test, I don’t really care, I know I can’t eat gluten.

This was before there was a lot of knowledge about a gluten free life style and celiac disease, so I became an advocate.  I started a blog and worked hard to bring awareness.  I worked with local groups.  I was a taste tester for Whole Foods Gluten Free Bake House.  It was an exciting time for me, I felt like I was making a difference.  Then my Meniere’s Disease got so much worse.

When the Meniere’s Disease went bilateral, meaning I suddenly had it in both ears instead of one, I had to rethink my life.  (if you don’t know about Meniere’s Disease, and you’d like to, please see Meniere’s Disease-My Story at the top of the page.)  Once I saw my new doctor at Duke Medical Center I had renewed hope (more than I should have really).  I was going to focus on getting healthier.  I wanted to increase my exercise and start eating even healthier.  I decided to stop writing my gluten free blog and start a blog all about me getting as healthy as possible with Meniere’s Disease and (suspected) celiac disease.  This blog was called 365 Days to a Healthier Me.

I soon discovered I was not going to be able to focus as much on getting healthier as I was on simply getting through the day.  The vertigo was happening almost daily and I was losing my hearing rapidly.  I decided to start writing about my experiences with Meniere’s Disease (I stopped writing about a gluten free lifestyle by then) and this naturally morphed into advocacy.  I found others were out there who were struggling as I was and needed some support.  Soon I started talking about other illnesses I struggle with on a daily basis, such as chronic migraines and bipolar disorder.  I have found that people with chronic illnesses need a voice.   I hope I can add a little voice to a lot of other voices.

After the loss of my hearing and with continued struggles with vertigo I haven’t been able to advocate in person, but I continue to try to keep up the good fight via the internet.  Sometimes I’m not able to do as much as I’d like due to my illnesses, but I’ll keep trying.  That’s all we can do.  Keep trying.

If you’d like to read more posts from today please search for #HAWMC and check out WEGO’s Facebook page.  and don’t forget to check out Picnic With Ant’s Facebook Page too.  🙂

If you would like to share your story on Picnic with Ants, contact me through the contact form on my About Me – Contact Me Page.

*All images on this site and the creation of Wendy Holcombe unless otherwise noted.

A Challenging Time..My first LP #HAWMC April 9th

This month is Health Activist Writers Month Challenge, put on my WEGO Health.  I’m getting a really late start, and since I’m having surgery on Tuesday, I probably won’t get many of the prompts done, but I thought I’d try to complete as many as possible.

I wrote the following story about the day I had to have my first lumbar puncture.  It was a challenging day to say the least.  I got through it because I researched it, and I trusted my doctor.  Now, I’m not saying to put all of your trust in just any old doctor.  This doctor had been seeing me for a while and deserved my trust.  Not only did the research and the trust of my doctor get me through this challenge, but he support of my husband helped me so much.  He was there with me every step of the way.  Having that kind of support really helped me through this challenge.  It also helps me to think about others who are going through the same thing I am at the same time and send out love and compassion to all of them, this will include myself.

This story was written about a procedure I had on November 3, 2010.

Me a recovering after a lumbar puncture.  It wasn't so bad.

Me a recovering after a lumbar puncture. It wasn’t so bad.

Wendy sat in the waiting room, waiting for her name to be called, waiting for another test, waiting for one of the scariest procedures she could think of having done. Her husband tried to make small talk, and he held her hand. She knew how lucky she was to always have him by her side, he always made things better just by being there. Could he possibly know how terrified she was? She wondered if she could be as understanding and supportive if the circumstances were reversed? Could she be so selfless? Could she simply do what was right? For him, she thought she could do anything.

Looking around the room, Wendy wondered how many people were going to have the same test she was having? How many people were unsung heroes like her husband? How many were there because they felt they had to be?

“We want to do a lumbar puncture.”, the doctor had said. “We have found that some patients with your symptoms have abnormal cerebrospinal fluid pressure.”

“Alright,” she said. Why did she believe this doctor so much? He is a specialist in vestibular problems, but it was more than that, he gave the impression that he really cared. She knew deep inside that he would never ask her to do anything he would not do if their situations were reversed.  She quietly asked, “Is it painful?”

“A Lumbar Puncture is a Spinal Tap. However, your procedure will be done under a live CT scan, and you will be numbed. It is not scary like it used to be. Not when it’s done under such a controlled environment.”

The only words that Wendy heard were, Spinal Tap. When she was a small child she was scheduled to have a spinal tap, but the doctors decided to try different testing to see if they could find out the answers they needed without putting a small child though such a “painful” procedure.

This memory came flooding back. She could taste the bile in the back of her throat, the tears forming that she refused to let fall, she would not show the terror she was experiencing. She nodded, as the doctor spoke, hopefully at the proper times. After leaving the exam room and making the appointment, she couldn’t make it the car fast enough. She broke down.

She had been through so much this past year. The vertigo attacks often lasting hours upon hours, many days each week. The surgery on her right ear that helped the vertigo caused by that ear, but now the left ear was causing just as much trouble. The profound hearing loss. She’d simply lost so much, would this test help? Could it actually provide any answers? What if she refused?  Could they do something else?

Her husband patiently listened, and told her, “You can always change your mind. Just give it a few days and see how you feel about it. Do more research. I know you. You don’t want to make a decision based on emotions, you will want to find out more, much more, before making that kind of decision.”

Of course he was right. A spinal tap! The fear stayed knotted in her stomach for days. She read as much as she could about a lumbar puncture performed under a CT scan. She also found out as much as she could about the doctor who was going to do the lumbar puncture.  She found that a lumbar puncture preformed as hers was scheduled should not be a painful or dangerous procedure. She also found that the doctor performing the procedure was very highly respected.

She also found that many times a lumbar puncture is performed just like they always have been. This brought back all the fear.  The poor patients that must undergo this test.  It’s painful, it’s scary, and it’s dangerous; but she understood sometimes people cannot have a CT scan but need to have the procedure done, or it has to be done quickly.  Relief swam over her knowing she would not have to undergo that type of procedure.  She silently sent out love and compassion to all who were having a lumbar puncture that day.

“Wendy?’ Her husband pulled her from her thoughts….. “They’re ready for you.”

Hey Doc, You are Fired!!

you're Fired

Small note…I started this post on Friday, April 18th.  I updated it today.  It’s a bit long, sorry.  I apologize if it is a little bit jumbled, my head is in that frame of mind right now.  Trying to get everything in, and just now knowing where to stop.  As normal, there may be grammar, typo’s and all kinds of mistakes, if it’s too much, just let me know.  But you may get a long letter back.  : )

After much toil and trouble trying to get help from my psychiatrist, it’s time to give up and move on!

Hey Doc, You’re Fired!

I wonder if firing a doctor makes them understand much, after all, they still have a job, but they don’t have me as a patient any more. If she continues to treat patients the way she has treated me, I don’t see how her new practice is going to survive!  Also, where I’m concerned, she will be told why she no longer has me as a patient, maybe it will bring some understanding.  I’m sure part of this is my issue, but some professionalism must be maintained between a doctor and patient.

From my last post you may remember that I saw my psychiatrist on Wednesday, April 9th.  (This was after a month of trying to get my medication straight and get an appointment to see her.  All of that after having side-effects from a medication that I should never have been put on.  She did not look at the medications I had been prescribed by other doctors.  If this had happened, and we had discussed this, I would not have been prescribed a medication that interacted with my other medications.)   On the 9th, we discussed my medication, and I discussed the fact that I felt the need to start an emergency plan in case I was going to hurt myself because I was having many thoughts and desires of doing just that.  I really felt this was not taken seriously, perhaps because my husband is with me most of the time, and cares for me?  I don’t know, I do know I left the office wondering why that was just brushed off.  One reason she may have thought I didn’t need more discussion on this is because I was taking precautions.  I had my husband lock away all of my medication and only dispense them as they are prescribed.  I had him looking for more clues, other than just me balled up on the floor falling into an abyss.  Yes, I was cycling, so on the good swings I was able to try to set an emergency plan in place.  But on the down swings….well, that’s a different matter all together.  However, I cannot stress enough, if you have any mental health issue and feel you may harm yourself, try very hard to make a plan that will help you.  If you want to know more about what I did…please contact me, just look at my About Page.  It may not be everything, but I found it a great help that I knew I was helping myself in some small way even when things were spiraling out of control.

During the latest visit we did make a plan for my medication, but she wanted to talk with my neurologist to make sure the medication she put me on wouldn’t interfere with any other medication she had me on.  Finally, I thought, a Great plan.  She said she should know by Friday, April 11th,  and would be in touch.   That didn’t happen.  My husband called on Friday, Monday, Tuesday, Wednesday, Thursday….and Friday (when he called on Friday the 18th he learned the office was closed for Good Friday).  Each day he only got a recording to leave a message, he never talked to a real person.  I emailed the main office on Wednesday to reiterate that my husband was trying to get in touch, and no one had called him back.  I also made sure they were aware that he is authorized to speak for me, as I cannot talk on the phone.  (This is listed in my files, he has full power of attorney for me.)

My husband also talked with my neurologist.  She said the medication would be fine.  (I’m not sure if the psychiatrist ever actually got in touch with her or not.)   Thursday, April 17th hubby and I talked and decided we would ask my neurologist or general doctor if they would write the prescription for the medication.  Preferably, my neurologist because it is a medication she often prescribes.  (I had already decided I was going to change psychiatrist  but I needed to start the new medication now, who knows when I’ll get an appointment with a new psychiatrist.)

The plan for Friday was to call the psychiatrist first, trying to reach out one more time.  Then call the other doctors mentioned, and to get in touch with my therapist, and hubby’s therapist to see if they might have recommended psychiatrist for me to change to.   However, when hubby called, (as I said earlier) the psychiatrist office was closed for Good Friday.  Yet, she still had not returned any of our calls!  (yes, I am so disappointed in this woman, you have no idea!)  He also called my general doctor, and her office was closed.  He called my neurologist, and she was in!!!  Yay!  She also called in my prescription!  (she was already calling in a prescription for me for steroids to see if we can break this cycle of the killer migraines).  I must say, most of my doctors are WONDERFUL!  I love them, and I know they care about me.

These are just a few of the reasons that I’m firing my psychiatrist, but there is something else that really bothers me about the whole thing.

When I first saw this doctor I had a very good first visit.  It felt right.  Then when I returned for my second visit she seemed to have forgotten everything we talked about.  No, I don’t expect my doctors to remember everything from every visit, but I do expect them to look at my file and be a bit up to date when they walk in the room.  She met me by telling me that she was leaving the practice I was seeing her at, when I was referred to her I was told she was not taking new patients, but since she worked so well with my therapist  she would accept me.  I was conflicted about this because my therapist is with that practice and I like for my doctor and therapist to have a good working relationship.  But I felt very good about the first visit so I decided to follow her to her new practice.  (and when I say new, I mean, they were just starting it, so it’s a big deal for the doctor’s involved.  I realize this has to be a lot for her to deal with, but it shouldn’t be at the neglect of her patients).

Now that I think back on this, it bothers me.  First, it was questioned if she was taking new patients, and she decided to take me on because she likes my therapist so much….ect.   I was thrilled at the time.  Now I think, she should never have taken me on as a new patient when she knew she was leaving that practice.  She had to know, my first and second appointments were only 2 weeks apart.

I know this post is getting a bit long, but I feel I would like to say some good things too.  When I first saw this psychiatrist, I felt validated for the first time in years.  She understood how I couldn’t just exercise…ect.  She seemed to really understand my chronic illness and was willing to work with me.  We discussed that at some points I may have to cancel my appointments on short notice, she understood and set me up special appointments on her planning days, so if I couldn’t come, she wasn’t losing any money.  This plan was still in effect at her new office.  I only had to cancel at her new office ONCE, so I don’t think this should have been an issue; but I don’t really know.  There are 2 other big things that bothered me when she moved.  I have severe asthma.  She put an aromatherapy thing in her office, I could not breathe in there.  I put on my mask and got way to hot and couldn’t stop coughing.  We had to move to the conference room.  I was very uncomfortable there.  We were even interrupted by her husband and that made me feel very odd.  I know it is too much to ask, but after her extreme understanding, or so it seemed, at our first meeting, I kind of expected the smelly thing to be gone from her office when I returned.  I guess she doesn’t have any other patients with scent issues.  One huge thing, as you all know, I have a big problem hearing. this doctor talks very fast.  I ask her often to slow down.  She will apologize and then continue to speak at the same speed.  This is the reason I have to have my husband in my sessions.  I would prefer not to have him in there.  It takes more time, and I feel I’m just spending time going back and forth trying to understand things.

Now, we wait for a bit to see if she will actually return my husband’s calls next week.  If she does, he will explain in detail why we will no longer be in need of her services.  If she doesn’t, I will be writing her a letter.  At this time I’m not sure what other actions I may take.  I do feel doctors should be more responsible for how they treat their patients.  They are in charge of a person’s health.  A mental health provider could the that cog in a person’s life that changes a life forever….or puts it in a delicate balance of life and death.  Am I being overly dramatic here?  I don’t think so.  If I believe my doctor cares and is trying their best to help me, I feel better.  If they ignore me when I have made it clear that I am in a very tenuous state, I feel less like a human.  This is a huge responsibility.

If she calls, we will simply discharge her.  I can understand that she may be way over her head in the new office, that she may have hired the wrong front staff people….ect.  I feel compassion for her about all of this.  There may be extreme circumstances in her own life.  In a business, especially one of this magnitude, extenuating circumstances should have been relayed to the patient and taken care of by another doctor on call.  But she doesn’t even call???  No one called.

So now you know my whole story.

On closing….my therapist got in touch and recommended a new psychiatrist.  We have been in touch, and will see where we are going from here.  I’ll keep you updated on that.

Always remember, we need to be an advocate for ourselves!

If a doctor doesn’t treat you with respect, or if you are just uncomfortable in their care, and you have any way possible, change doctors!  I know some people just can’t do this as easily as I can.  I grew up in a very rural area, I had two choices for a general doctor.  No choices for specialist.  The nearest doctors of choice were over an hour a way.  (this may have been a major reason I was not diagnosed with Bipolar I Disorder as early as I might have been.)

Yes, I may have a mental illness, and recently I may have been very depressed because of my medication has not been working properly, but I am a human being.  Oh a better note, I am feeling much better (I know I need to get my medication straight because with Bipolar I Disorder I might feel fine one day and not so much the next).   Doctors still need to take patients seriously.

Yet, I realize that a lot of people will think, “She has a mental illness, is admittedly not stable, she is probably exaggerating about things.”  Or something like that.  I’m lucky I have someone (my husband) who can also help be an advocate for me and explain this is not “all in my head”.   But what if I didn’t?  What if I didn’t have the ability to just change psychiatric doctors?

There needs to be much progress made to help people who need mental health care.  (or health care in general) If they can’t afford it, they are often put on a LONG waiting list to see someone that the state provides.  They have no choice in doctors.  They are often lost in the system.  When you are having mental health issues, trying to navigate the system to be seen at all is extremely hard.  (Yes, I am speaking from experience).   Things need to change.  How can we bring about a change?

I’ve thought and thought on this issue, and I just can’t see how to make things better in this country.  Are the mentally ill meant to live a life of less?

Mental Health care (and general health care) in this country is great….if you can afford it!

Thoughts?  Ideas?  I’d love to hear them.

Being a better Advocate – updated

little butterfly on my Echinacea plant

I’ve always said that we must be our own best advocates.

We need to find out as much as we can out our illnesses, and make sure the doctors we choose are up to date, and caring.  For me, I like doctors who will think outside the box.  Who try empirical evidence, instead of thinking the normal is normal for everyone.

It’s also very important to make sure your doctors understand what is going on with you.  That has been a hard thing for me lately.

I didn’t want to admit that I’m not doing well.  I have been so happy with the results of the CSF patches, that I didn’t want to think that I might be taking a step backwards.  I’ve been keeping my doctor advised of my situation, but I have been downplaying it.  Stuart says I haven’t even been honest with myself.  I haven’t admitted that Meniere’s has been ruling my life again.   No, I haven’t been having full-blown attacks, but I’ve been feeling so bad that I spend most of my time lying down or sleeping.  I got the Wii Game Just Dance this week.  It’s so much fun, but every time I try to do it, I end up having mini spins and spending hours just wanting the world to be still.

So today I sent Dr. Kaylie an email, and told him just how much this has been affecting my life.

I realized that I have not been taking my own advice.  I have not been a good advocate for myself!  That is going to stop.

If I don’t hear from Dr. Kaylie by tomorrow I will have Stuart call his office.  (Yes, Stuart.  Another way this is affecting me?  I can’t really hear on the phone very well.)  I’ve also decided I don’t feel comfortable driving.  Feeling a bit drunk all the time, is not the way you should feel when you are driving.

I feel much more empowered now.  Just speaking up, and telling my doctor that I’m disturbed by what is going on, made me feel like I was doing something productive.

**update** Dr. Kaylie emailed me back, and a copy was sent to Dr. Gray (Linda).  He said, “It might be a good idea to get another myelogram.  What do you think Linda?”

I’ll keep you posted on the outcome.