Category: interview

Interview with a Pediatric Rheumatologist

Posted on by Grayson

A while back (okay, a year), I sat down and had a phone conversation with Dr. Alexei Grom at Cincinnati Children’s Hospital. For those of you who don’t know the name, Dr. Grom is one of the experts on Still’s and MAS in children. He also focuses on Juvenile Dermatomyositis. He was super nice, and we discussed a lot more than I’m putting here, but a good amount of it was related to my current level of care and medications, so I won’t necessarily put that info here.

One of the first questions I asked was about how Dr. Grom got into pediatric rheumatology, and why he focuses on these diseases. During his fellowship training, he worked with a pediatric rheumatologist. He found the field intellectually stimulating. Then, a SJIA patient died due to MAS. He knew he wanted to help focus on why MAS occurs in SJIA so often, and wanted to work with JDM children as well. He’s definitely not in it for the money!

In 2006, the rheumatology world reached a turning point as far as these diseases are concerned. New papers were released on SJIA, which brought about a new treatment algorithm. Kineret came out. Now, we have ideas and more treatments centered around interleukin inhibitors.

We discussed the question of whether remission or just getting the disease under a bit of control should be the goal, and remission is definitely what we all want. Dr. Grom believes that pediatricians need to learn more about these diseases and really think about them. Six to nine months post-onset is the golden window to starting aggressive treatment with the best chances of remission, yet we have children waiting over a year to get a diagnosis at all. It has to change.

I brought up methotrexate, which I had just failed for the second time (first go was pill form, second was injection). He doesn’t favor mtx for SJIA. There is some response, but poor control for us specifically. And 10-15% of JIA kids don’t respond to the medication.

I wanted to know how physicians tend to get information on pain from children, because I didn’t go through that due to my issues surrounding access to care. The biggest issue docs face (and parents too sometimes) is that it’s hard to gauge what normal is in children, especially in younger kids. He encourages parents to use pictures to illustrate the differences in how their child is doing.

Many parents and families that I know have wanted to know what doctors wish they did differently when it comes to appointments and disease management. He wants his patients and their families to understand the courses the disease can take – complications, morbidity, etc. He also wants us to be well versed in side effects on our treatments as well as treatment options. Compliance with medications is always preferred, but if that can’t happen, note why. Is it a side effect? Does the medication wipe your kid out for a week, so you change up shot days when there are big events coming up? We should have folders or binders of this kind of information. Kids should also be learning about their disease and all this as they grow with age appropriate information.

Finally we touched on a more recent theory – that SJIA/Still’s shouldn’t be lumped in with the other JIA types. Studies out there are hinting that SJIA/Still’s are both more related to the periodic fever group of diseases, which makes sense with the fevers we get!

It was a great discussion, and he really helped me get a hold on what is going on today from the provider standpoint with SJIA. He also helped push me to seek out some different medications and, if that doesn’t work, different care… which I may be doing soon.

Thank you Dr. Grom for talking with me and for all you do for SJIA kids!

Day 9: Caregiving #HAWMC

Posted on by Grayson

Today’s post centers on tips and advice to the caregivers out there. Over the past few years, I have posted several things focusing on caregivers that I felt needed reposting. Take a look!

  • A review of Partners in Healing: Simple Ways to Offer Support, Comfort, and Care to a Loved One Facing Illness by William Collinge, PhD.
  • An interview with Carla Jones, author of Death by Rheumatoid Arthritis
  • A review of After the Diagnosis: Transcending Chronic Illness by Dr Julian Seifter & his wife Betsy
  • A study showing that partners of those with RA and like diseases suffer as much emotionally as the patient themselves
  • A post from last year’s HAWMC focusing on my support system
  • Two posts on sex and chronic illnesses:
  • An interview with my fiance about the difficulties of being in a sometimes caregiver role, and tips/advice for others doing the same
I hope that this lovely collection of links can help to add to the knowledge that you, as a caregiver, are not alone – and that relationships can survive and even thrive through these chronic illnesses. It took living my own life to realize that, as bad of a third wheel as Arthur can be, he can’t ever severe the relationship I have with my fiance. I refuse to be another one in a long line of statistics proving that love loses in the chronic illness game. But that takes understanding the difficulties that come along with A) dating me and B) dating Arthur – realizing that it is just as hard for my fiance to live with Arthur as it is for me, and maybe even emotionally more difficult because he knows there is nothing he can do to fix this for me.
Just as a final remark to all my fellow spoonies – please remember that you’re not angry with your significant other, but with your illness. It makes a huge difference when you stop taking out your anger on the people who are there to support you.

Interview with Carla Jones, Author of Death by Rheumatoid Arthritis

Posted on by Grayson

You guys, I am soooo excited to share this with you! A few weeks ago, I noticed that one Carla Jones was following me on Twitter. The name seemed really, really familiar. Upon taking a closer look at my Kindle App on my phone, I quickly realized why.

Carla Jones wrote an e-book about her mother’s battle with rheumatoid arthritis and how, sadly, complications from the disease caused her mother’s death. Carla is so, so very brave for writing about this, and is using her mother’s story to promote better understanding of the severity of RA.

As a loved one of someone who suffered with and died due to RA, I thought that she would be able to offer a unique perspective on my recent focus on our support systems. I am so, so thankful that she agreed to answer my questions.

So without further ado, enjoy this awesome interview!

In the introduction to your book, you said that you would want to know complications associated with RA if you were diagnosed. Do you think that organizations should be making this a goal of raising awareness?

Most definitely.  I think it’s great that many arthritis support groups and organizations have a positive approach to a life dominating disease, such as RA.  However, [I] strongly believe that patients need to get a well rounded education, on the multiple complications that can accompany rheumatoid arthritis.
Or, to put it another way, do you feel that sometimes organizations put too much of an emphasis on the positive, avoiding the negatives of RA and like diseases?

Yes, and I’m not alone.   I’ve heard this comment from one of leading spokesperson for RA, Kelly Young, founder of The Rheumatoid Patient Foundation, as well as an employee from a well known arthritis organization.   Patients need to have a balanced education on positive interventions, yet need to understand the negative attributes associated with RA.  The online arthritis community of patients are the true forerunners in this arena.  I know that as we work together, that eventually, people will learn how to better take preventative measures to avoid serious complications from RA.

Your mother seemed to be a very positive person. Were there ever any moments where you could see a change in that due to her illness?

Her continual optimism was forged by her faith as a Christian.   Seeing past the physical to the spiritual core of every situation enabled my Mother to experience hope, in a person; not a circumstance.  This spiritual vantage point allowed her to keep going mentally and emotionally.  Alongside any chronic illness, depression and anxiety are present.  Thankfully, she made a daily choice not to allow these traits, to dominate her attitude. 

Were there ever moments where you had to stop being a dear daughter and instead use tough love regarding your mother’s illness and treatments? If so, how difficult was that for you?
Yes, my sister and I needed to be hard-line advocates on a consistent basis, in order to aid my Mother at every turn of her treatment.  Ultimately she made all the choices about her care, but we did our best as a team to investigate all treatment options beforehand.  The biggest challenge our family faced was getting her a proper diagnosis and regulating her excruciating pain. Due to the advancement of her disease, her pain was difficult to get under control.   Frequently my sister and I would question the doctors about switching or upping her pain-killers.  This was a terrible, ongoing problem.  As she lay there, I remember literally seeing the tormented waves of pain wash over her face, in spite of the fact that she was pumped up with high doses of narcotics. It was a terrifying and helpless feeling.  One E.R. nurse told us that she had never seen anyone in the E.R. taking so many narcotics and functioning as normally as my Mom.  
Were there ever moments where you felt taxed and worn down by caring for your mother? What are some ways that you handled the stress and pressure that go along often with being a caregiver?
Thankfully, she had help from many nurses and nurses aids so I was not alone, for the last two years of her life. There were periods of feeling completely overwhelmed with taking care of my Mother but, I knew she needed me and I was going to be there for her. 
Prayer helped me through this long dark period, for it is the number one way I handle stress in my life.  Conversing with God and reading the Bible put my circumstances into a healthy perspective.  A verse that aided in my stress:  Romans 8:28 – And we know that in all things God works for the good of those who love him, who have been called according to his purpose.  This one simple verse was a huge comfort for me.  I also distinctively recall sitting on my couch and just thinking the words, “Trust me.”  Sounds far-out and bizarre to some, but I know this was God’s way of redirecting my thoughts back to Him. Talking things out with my family and friends helped immensely.  Where there is understanding, there is validation, after validation, peace follows.
I have seen you list several medications in your book, but no biologics. Was your mother ever on those? If not, do you ever think things might have turned out better if she had been?

She was on Enbrel, Humira and Remicade. Unfortunately, they did little or nothing to slow her RA.

Were there ever days where you considered alternative treatments, like massage and healing touch? Why or why not?

I asked her if she would consider massage therapy. Since her frame was incredible frail and brittle, the thought of anyone rubbing her skin, turned her off.  She was concerned that a therapist might accidentally break one of her bones. 

If you could offer any advice to people in a caregiver/loved one situation, what would you say?

I would tell them to surround themselves with empathetic, positive people.  This may mean family members and or a support group.   Take care of yourself!  Don’t feel like your loved one solely depends on you to do everything for them.  Learn to take time out daily for relaxation to get your mind on something you enjoy.

Your mother became pretty religious during the course of her life. What kinds of effects do you think her faith had on her illness?

Her faith was her life-blood and sustained her.  God transformed and was the center of all areas of her life.  Studies show that those with faith in God fare better than those that do not.  This could be mentally and or physically depending on the person.   

Was it difficult to write about your mother’s passing, or was it more therapeutic?

It was a combination of both.  Initially, I just started journaling about my relationship with her and of how I had missed her.  As I have said before, she was my Mom but honestly was the best friend I ever had.   Before she died, I read her a “Thank You” letter I composed, for all the many things she had contributed to my life. Afterwards I wrote a short note of the many ways she impacted my life with her faith and love, at her funeral.  Then I started getting mad.  Mad that she was not able to be saved and very well could have been.  I thought there must be others people that have died from complications due to RA, even though I had never heard of such a thing. She can’t be the only one.  I immediately felt the need to inform others of the reality of this agonizing death.  At this point I began researching all that I could on the topic.  It definitely was an emotionally draining process, having to relive the grief throughout the course of writing the book.
For those who haven’t read the book, your parents separated quite some time before her illness set in. However, your father seemed to be around a lot during times when you both must have needed him the most. How did he handle the situation? 

Yes, he was very supportive and understanding.  The two were the best of friends.  He was in constant communication with the three of us.  My Dad was his usual positive self and always had helpful advice for my Mother through every stage of her decline.  Her death was extremely difficult for him.

Do you have any advice for newly diagnosed people and their loved ones?

Get informed:  Seek out well rounded education on RA. Don’t limit yourself to whatever information your doctor is able to share with you.  He or she has a limited amount of time and knowledge. Read up on RA and ask specific questions suitable to your symptoms.  Get support: Online support groups for RA are wonderful!! I’ve had nothing but positive feedback from those involved in on the social media sites.  Getting empathy is so important when you are struggling with any difficult situation and I’ve met such caring people from this source including you! [YAY!] I find your blog information to be helpful, informative and personal.  I respect and applaud you for raising awareness to Still’s disease and RA.   Another person to connect online with would be Kelly Young, aka “RA Warrior”.  Her blog contains an array of helpful information for those fighting the disease.  She’s a dynamic, educated woman with thousands of followers, including doctors.   I met her on a trip to Florida last year and I now have the extreme privilege of calling her my friend. 

In closing, I’d like to note that you are donating all your proceeds from the sales of your book to the Arthritis Foundation. I think that’s pretty kickass, pardon my French 🙂

Thank you kindly for the compliment, Kirsten. It’s the least I can to do contribute to those fighting this precarious disease.  My hopes are that one day soon, a cure is found and I believe it will happen in our lifetime.  It was an honor being a guest on your blog. You are an inspirational support for many.

Thank you SO much Carla for agreeing to do this interview, and for your kind words 🙂  It has truly been an honor to be able to learn more about your relationship with your mother, and how you handled this very tough time in your life! I hope that your mother’s story continues to touch the lives of others as it has touched mine.

The Boyfriend Speaks!

Posted on by Grayson

I always talk about how wonderful my boyfriend is and how very lucky I am to have him in my life. It’s true. I asked some of y’all to send me some questions via my facebook page and some wiseguy wanted me to ask him the first three questions. Apparently he didn’t prepare amazing answers to them. But I’ve gotten a lot of good ideas from you guys, and I had a lot of questions I wanted to ask him too. I get really shy and emotional around some things though, so they’re never things I would have normally asked.

But like I had to remind him during some of his answers, this is a safe space!

I hope you guys enjoy reading my interview with my honey as much as I enjoyed asking him some of these questions.

 
K: I am awesome. Thoughts?
T: I agree! There is a lot about you that I admire.
 
K: Ok, so then if I’m so awesome, where is my spa day? Is it because you don’t make more money? Does that bother you?
T: Wait, what?
 
K: Why don’t you make more money so I can have a spa day?
T: Cause I’m lazy.
 
K: Ok, fine. I’ll ask normal questions. Pssssh.
 
I know it’s been a long time, but can you remember your initial reaction when I told you about my illness?
T: You brought it up really early on.
 
K: Yeah, it might have even been on our first date.
T: Maybe. You were pretty open about having it. I kind of just thought of it as another fact you learn about someone else. It was interesting, but I don’t recall any weird reaction. I just thought it was one of those things.
 
K: We used to be a lot more physically active in the earlier years of our relationship. Are there any things that we don’t do as much that you miss?
T: it seems more like we did those things because it beat hanging out in a dorm room and we didn’t have to work 40 hours a week. A few weeks ago, we went hiking and today we walked State Street, so I think we’re plenty active.
 
K: When we first began dating, you wanted to learn more about my illness but I was really afraid to share some of it with you. How difficult was it when I didn’t share?
T: It doesn’t really stand out in my mind. It probably bugged me a little bit, but more from a standpoint of I didn’t know what things were okay to do sometimes. I figured you would share more when you were ready.
 
K: Part of how I was finally able to share my illness with you was through my blog, which you encouraged me to do. Does it still help today with communication on how I am feeling?
T: I think you communicate more directly with me now than in the past. I think you should blog more often though.
 
K: I sometimes share a lot of information on our personal lives on here. Does it ever bother you?
T: No. Like I said I think you should blog more. You share personal stuff, but it’s pretty nonspecific. If someone really wanted to, they could easily figure out who I was. But I don’t think that’s a big deal.
 
K: We have really begun to do a lot in the past year with the Arthritis Foundation and other organizations, like IAAM, to raise awareness about the many different types of arthritis. Do you feel more involved with my illness because of it?
T: It’s fun to do the walks and do fundraising things. I like feeling like I’m helping. I mean, I wonder sometimes how much it helps but I like feeling like I do something. I like that you are so involved with organizations and WAAD. I think it would be really neat if you could turn it into a career… You know, if you wanted to.
 
K: How do you think the dynamics of our relationship have changed as my illness has progressed?
T: I dunno how much things have changed. I sometimes wish we did more, even cleaning and such around the house. But then I don’t do it either. Sometimes I forget too, because of our schedules, that you work 8 hours a day. I think that if you weren’t sick, you’d get frustrated with me not cleaning and such as much too.
 
K: What are the three things you hate the most about my illness?
T: Hmm. Sometimes it takes a while to get going on days. Like Saturdays [our shared day off], I want to go do things sometimes more quickly than we can. I don’t like that it makes you stiff and that you hurt all the time. I wish that I could fix that. I dunno, it all just comes down to I wish that you weren’t sick and didn’t hurt. I wish that you could be like me and lay around out of laziness and not because you’re being forced to because of your illness.
 
K: What is it like for you emotionally when I’m having a string of bad days or a bad flare up?

T: Sometimes it’s vaguely annoying because it seems like my sad days seem to coincide with your bad days. Sometimes it feels difficult because I want to be able to be whiny and have my own bad days, and I feel bad saying it because it is so, so much for you… but sometimes when you have bad days, you get really good about sharing things and I feel like it’s so much going on that it gets annoying. I like that you share though. I feel like a jerk saying that. Don’t be mad at me.

This interview just got real, yo’

 
K: Do you worry about little things hurting me? Are there ever times when you are afraid to do something with me because you’re worried it will hurt?
T: I’m always conscious when we are walking to walk slower, because I walk really fast [he does!] and I know that walking faster like that probably hurts you. There are other times where I want to go do things, like go hiking, and I mention it but then I realize that it’s probably not the best idea that day.
 
K: I could probably be more direct about things like that too though. When you say hiking would be fun and I say maybe, I should be saying more directly that it’s probably not a good idea that day.
T: Maybe 😉
 
K: You are always so, so good at helping me when I’m not doing well. Do you ever get tired of it?
T: Yeah. Some days it feels like I have to clean up after you, but then I realize that you’re probably not feeling well. I generally like helping. If you are feeling crummy and needed me to get something, I would do it but you never do that. I feel like you should be more open about that.
 
K: Do my limitations ever frustrate you?
T: Sometimes, like if we go hiking or something. But I always overestimate my own physical ability too. I wish we could do things more, but you don’t have too many limitations.
 
K: What do you think are the most difficult aspects for a spouse or loved one of someone with RA to understand and deal with?
T: I think it’s just tough to realize what being in pain all the time means. I don’t have any concept, and we’ve been together for four and a half years. And just knowing that you can’t do everything. Yeah, it would be fun to play tennis and things like that, but it’s not worth you being in pain. There are other fun things we can do though. I think it can be a good thing. You can find other fun common interest things to do… like seeing giraffes! Or morning sex on the weekends.
That might fall into the too much personal information category. Oh well.
 
K: Do you have any advice for fellow couples dealing with autoimmune arthritis?
T: I would advise the person with the illness to just be open. If the person really wants to be with you, they want to know that stuff anyway. If they don’t, then they’re not worth being with anyway. I guess that advice doesn’t really apply to people already together where one develops an illness.
I would advise the significant other to be open and understanding – realize that any sacrifices you have to make are small compared to actually being sick. Your sick loved one doesn’t want to be sick and limited. Just be nice and do the things you’re supposed to do, whether that person is sick or not. I know that’s a tall order for some people though.
__
I’m really glad that I was able to interview him, because I think it really helps me understand the things that he goes through more too. I think sometimes I make myself feel bad about being sick and bad that he sometimes has to do more, and I probably do it more often than I need to. And we all need to have our days to whine. I’ll still share what is going on with me, but maybe I’ll tone it down once in a while so he can have a whiny day 🙂
I think it would be a really cool project for all of you coupled people to interview each other with some of these questions. It can be sometimes surprising what you find, and it might just help you guys grow closer.