Continuing my effort to share how Autoimmune Arthritis has made your life better, even in the smallest way. Here’s today’s quote.
Continuing my effort to share how Autoimmune Arthritis has made your life better, even in the smallest way. Here’s today’s quote.
Yesterday, I shared a brief interview I did with my daughter. Today it’s my husband, Sean’s, turn. Sean and I have been together for a long time (17 years) so my Rheumatoid Arthritis diagnosis (2012) isn’t something he signed up for. I’ll let his answers speak for themselves but I will say that never has Sean doubted my pain. He’s never doubted how I feel and supports me 100%. He would do anything for me and I consider myself very lucky to have my best friend not only beside me going through life’s ups and downs, but beside me while I battle this jerk of a disease.
Do you ever feel frustrated or angry that I have Rheumatoid Arthritis?
Angry that life has dealt you a seemingly unfair hand.
Are you ever scared that our children will develop a chronic illness because they have my genes?
I’m not scared but certainly concerned.
Do you understand my disease? Are there questions you want to ask but haven’t?
I understand it well and have no questions.
How does your wife having RA affect your outlook on life?
My outlook has not changed. I am concerned about the future.
Is there anything you miss from before I was diagnosed?
Yes. There are physical limitations and considerations that must be accounted for when planning events. We used to playfully wrestle.
How is/will your life be better because of your first hand experience with a chronic illness?
I am more informed and empathetic towards other who may suffer from RA. I can offer advice and support if need be.
How would you explain Rheumatoid Arthritis to others?
Having the flu constantly with extreme pain in your joints. An extreme loss of energy.
Are you concerned with my ability to continue working?
What do you perceive as the worst part of living with Rheumatoid Arthritis?
As a spouse of someone with RA, the worst part is watching the person you love the most suffer. Watching them inject themselves with chemicals that hopefully reduce the suffering all the while knowing it is harmful. As far as the person who lives with RA themselves, I think the hardest part would be the sudden change in ability to perform simple tasks. The inability to keep pace with the normal world and suffer with unrelenting and unpredictable bouts of pain. Feeling alone and not truly understood.
For Arthritis Awareness month, I wanted to do something special. I wanted to know how those closest to me, see my disease.
My son, a typical almost 15 year old, laughed and said he’d rather not answer my questions. He does spend his time asking me questions though, which I love. He wants to see the fluid in my hip, calls me “Kobe” when I’m all taped up, and will ask me point blank about my disease. I always know where I stand with him.
My daughter and husband can be a little more guarded with me. I had initially only asked my husband to answer questions for my blog but when my daughter found out, she begged to answer my questions too. ???
Below are the answers that my daughter, Gigi, soon to be 13, gave. I’ll feature my husband’s answers tomorrow.
How would you describe Rheumatoid Arthritis? As if you were telling your friends.
1) I would describe RA as basically a disease that causes your joints to ache, that can sometimes make it harder to use your joints.
Do you understand my disease? Are there questions you have that you haven’t asked? Why?
2) I understand the concept of it pretty well, I just will never understand the pain you actually experience unless I get the disease.
What do you think the worst parts of RA are?
3) I think the worst part is definitely the pain, because it obviously hurts and sometimes you can’t do things as easily as I could do them.
Do you ever feel frustrated, sad, and/or angry that I have RA?
4) I sometimes feel upset and angry because I don’t think you deserved to have this disease, and I feel upset because of all the pain you’re usually in, it’s hard to experience because I can’t do anything to make the pain go away.
Do you think your life is or will be better because of your first-hand experience living with someone with a Chronic Illness?
5) Yes I do think that, because if I ever get the disease I’ll know how to handle it a little easier, and if I ever am friends with someone with that disease I can kind of understand what they are going through.
Are you ever worried that you’ll develop a chronic illness because you’re related to me?
6) I am worried about it sometimes because I would not want to go through all of the pain or mainly have to deal with all of it.
It’s May which means it’s Arthritis Awareness Month. I’m starting the month hungover from methotrexate and suffering one of the worst flares I’ve ever experienced. Last week I had asked you to share with me how Autoimmune Arthritis has made your life better. Better? Yes, better. Would I wish RA on my worst enemy? Never! Am I grateful to have this disease? Heck no. But I have to find reasons for things, it’s who I am. And I have to stay positive. At least a teeny tiny bit. If I let myself get sucked up in the emotions of this disease, the hopelessness of this disease, the pain of this disease, I fear I will fall into a deep, dark place that will completely ruin my life.
So this month, I want to share how arthritis has change your view of people with Chronic Illness. How it’s changed how much you value those quiet moments with your family. How much you appreciate the beautiful sunrise and sunset.
If you haven’t already, please take my one question survey or even respond in the comments below. I’m happy to link your quote to your social media/blog account as well. Click here!
Today’s author’s blog is http://www.curlysuereview.com/ and you can follow her on Twitter here.
I read an interesting article this morning by Dr. Jack Cush on RheumNow and I’m wondering, where do you naturally choose to sit in an exam room?
Dr. Cush’s unofficial statistics show that 55% of patients sit in the chair furthest from the doctor, 25% on the exam table, and the other 20% in the chair next to the doctor’s desk/computer (see his diagram below):
My rheumatologist, endocrinologist, and PCP are all part of the same hospital system. My rheumy and endo have offices set up almost exactly as the image above. I always sit in the chair next to the desk. In fact, it never occurred to me to sit in the chair furthest away, sometimes I use that chair to hold my things. My PCP’s office on the other hand is different. They use a COW (Computer on Wheels) and it is almost always placed right next to the exam table. In all my years of going to my PCP’s office, I don’t think I’ve ever utilized a chair in the room.
I find this interesting because my visits with my rheumatologist and my endocrinologist, are more conversation driven. There is less exam and more discussion. In my PCP’s office, there is more of an even amount of conversation (explaining symptoms) and examination. Therefore, in my mind, sitting on the exam table makes sense.
If you are one of those that sit in the chair furthest from the doctor, think about why you do it. Is it a new physician that you are unsure of? Are you truly comfortable with your doctor? Do you feel at ease asking questions of your doctor? And most importantly, are you playing active role in making decisions about your disease?
Please read Dr. Cush’s article and let me know your thoughts in the comments below!
Growing up with Type 1 Diabetes, I was always aware of how I felt and if those feelings were due to my diabetes. Did I feel dizzy? Thirsty? Tired? Confused? These could all be easily attributed to a low or high blood sugar. Once diagnosed with Rheumatoid Arthritis, I added more physical feelings that I could attribute to my disease. Pain, stiffness, muscle aches, popping, cracking, etc. I am constantly putting those feelings into a bucket- the diabetes bucket and the RA bucket. Occasionally there is the “normal human” bucket where a cold, for example, might fall but even the normal bucket spills over into the disease buckets.
Being a parent to children who currently don’t have any major health issues when I do, can add a strong element of fear to my life. I question everything- “Didn’t he just go to the bathroom twenty minutes ago?” Must be diabetes. “Her knee keeps hurting, yet nothing happened to it.” Must be arthritis. “She keeps sleeping in on the weekend.” “His hands are really achy today.”
No, I don’t spend all of my time analyzing their every move or every sip of water they take. But these little thoughts pop into my head from time to time. Is there anything I can do to prevent one or both of them from developing an autoimmune disease? No. So why harp on it? Because I don’t want them to suffer. Of course I don’t want them to suffer having a disease, that’s obvious. But what I mean is that I don’t want them to suffer through waiting for a diagnosis. With Type 1, my parents were repeatedly told that I had a virus, to let it go. My father, a type 1 diabetic himself, eventually had enough and tested my blood sugar at home. I was immediately hospitalized. With Rheumatoid Arthritis, I spent months going to multiple doctors, telling them something was wrong, only to be told that I had tennis elbow and was favoring my joint. It took me not being able to walk anymore for someone to take me seriously and run a battery of tests. I don’t want my children, or anyone, to experience that fear, that unnecessary pain or stress on their body.
So if I can’t control who will get which disease, what can I do? I can advocate and educate. I can share my diagnosis stories, my disease symptoms, with anyone and everyone. I can share what I’ve been through and what I’ve learned with parents, doctors, friends, family, strangers. I can empower my own children to research their concerns and know that every question they have is important.
Sometimes you have to look back to look forward. Today is one of those days for me. I worked all day, no major pain, things seemed good. Went to the gym after work and everything seemed to stop. My feet hurt (they haven’t hurt in months), my body felt slow- every step felt like I walking in mud. I couldn’t get a rhythm going on the machine- I tried for 40 minutes to get a good workout in and I eventually threw the towel (into my gym bag of course haha) and went home.
Once home, I stopped to think. A little over 4 years ago, I couldn’t walk up the stairs to my bedroom as I had done immediately after coming in my front door tonight. I couldn’t stay awake to get my hair cut- the gym wouldn’t have even crossed my mind. I had to take time off of work because my Rheumatoid Arthritis was so out of control. I work full-time now and can’t recall the last time I took off due to my RA.
I have been pushing myself nonstop. I go to the gym the day after injecting methotrexate despite my body’s protests. I get so pale that my husband has to come check on me mid workout. I cry some days driving to the gym from work because my pain is so great.
When I was diagnosed with Rheumatoid Arthritis, I tried to find the reason. I need to understand things. I need to have answers. Five years ago, I was running myself to death- working crazy hours, including overnights and weekends, plus trying to care for two young children. I ignored the times my body tried to tell me something was wrong- I ignored the aches in my feet and the deep ache in my elbow until my body stopped. My elbow stopped bending, my feet stopped allowing me to walk up or down stairs. My body had had enough and forced me to listen.
Tonight my body gave me a reminder to stop. So tonight I’m going to listen. I’m going to celebrate what I’ve done this year in my journey to walk, dance, crawl my way to 2,016 miles in 2016. I’m a bit behind but I know I’ll catch up. I’ve moved over 400 miles since the beginning of this year despite knee and hip problems. And as I sit here, on the couch, resting, I’m damn proud of myself.
**This is a sponsored post- opinions expressed are based on my own personal experience**
If you’re like me, you may have found your first visit to a physician, especially a rheumatologist, a little overwhelming. I left my first visit with pamphlets/brochures about RA and medication options. My doctor told me that he knew I would go home and immediately go to google.com..he asked me not to but said to please share with him anything I had looked up so he could weigh in.
I won’t tell you what comes up when you google a disease. You’ve probably done it. And if you haven’t, I’d be willing to bet that you have looked up your health symptoms before. Sore throat, fatigue? Must be cancer, right? No! It’s hard to find quality information and to not have to spend time wading through articles and sites that have nothing to do with what you initially searched for.
This is where MedNexus comes in. MedNexus is a medical search engine that promises to provide greater accuracy and clarity. Their engine selects the most clinically-relevant and useful content for you.
One of my favorite things is the MedNexus homepage. Simple and easy to navigate. I don’t have to waste time looking for where to begin my search. I wanted to search “Rheumatoid Arthritis”.
When you initially start typing in your search criteria, the site starts listing questions that are relevant to your disease. Similar to Google’s autocomplete function, this can help you answer questions you hadn’t even thought of yet.
Upon searching for RA, the following questions started to come up:
If you ignore the suggested questions and just search, your results come up. Search results are broken down into the following categories:
Prior to viewing your search results, one of my favorite features appears:
Overall, I find MedNexus to be a wonderful site. I like that search results come from reliable sources and can be filtered into categories that make sense. I hope that you’ll visit MedNexus and please keep in mind that the site hasn’t been up for very long, so they are constantly adding additional medical conditions.
Yesterday, the Centers for Disease Control and Prevention released these guidelines in regards to prescription painkillers. The guidelines encourage physicians to only prescribe opiates to cancer patients, those that are terminally ill, or those in acute pain.
As a patient living with Chronic Pain from Rheumatoid Arthritis, I’m disappointed. The guidelines are intended to reduce addiction and death rates related to opioid use. I understand the risk of addiction and death but as a patient, what are the proposed solutions for me?
Here are the CDC’s Guidelines for Patients:
I doubt anyone working on these guidelines for the CDC knows what it’s like to be up all night crying in pain. What it’s like to experience such intense pain that it makes you vomit. And then to try to go to work the next morning and care for your family, after being up all night in pain with no relief.
Here is what opiate medications help me do:
How do opiates help you?
Last Saturday I had the privilege of going to my local JDRF TypeOneNation Research Summit. I learned valuable information and got some reminders I really needed (like bolus 15 minutes before eating, duh). Aside from wanting to share everything I had learned and ask everyone I knew to donate to JDRF, I walked away with an important action item for myself. Get set up with Tidepool. And that I did.
Quick background- I have a Minimed 530G with Enlite system. I also have the Minimed Connect which you can learn about here. I upload to Carelink via the Connect and I pretty much just glance at my screen, look over the past few hours, and try to make decisions on my diabetes. Sounds like a great plan, right? Uh, no.
Everything affects Type 1 Diabetes- food, stress, sleep, activity, hormones, etc. I’m fortunate enough to have Rheumatoid Arthritis to complicate things even further. My pain increases my blood sugar so much that I have a higher basal rate in the evening, for when my pain is at its highest.
Wouldn’t it be great to view my Continuous Glucose Monitor data and make little virtual notes on it, throughout the day to reference my pain, what I ate, when I exercised, when I felt stressed, etc.? Maybe it would look like this?
So cool, right? It’s Tidepool’s software (with the best name ever) Blip and it’s corresponding app, Blip Notes. Setting up Tidepool is a breeze- they are one of those wonderful sites where your username and password work for everything- no need to create 5 different combos for one site. You download the uploader (haha) and off you go! Don’t worry if you don’t have Minimed products like me, it works for most of those other companies too.
Even without the Blip notes, the data is impressive and informative. It shows things like how many fingersticks you’ve done (I need to work on that too…), boluses entered, basal tweaking you’ve done, etc.
For me, Blip notes is the icing on the cake. Free and easy to use. You create a new note, select one of your frequently used hashtags (at the top) or create a new one, add your note and done! Super easy, very quick..time and date are automatically added (you can change if needed).
I’d love to hear your thoughts on Tidepool- have you tried it? If so, what’s your favorite thing about it?