Health Blogging: Complications and Blessings
Health blogging as a patient is tough
The last month has been hard. Who am I kidding? The last five years have been brutal.
The RA is always the same: Just a little worse than yesterday. Like so many of you, I look for ways to make lemonade out of this bitter pain. That’s why I started health blogging.
A few weeks ago I had to be away from the blog for a week due to illness. Afterward, I pushed myself hard to try to catch up on comments and emails. Then, as I wrote the last email, AOL decided to reprint an interview that I did last year for Health.com. Life is funny, isn’t it?
You guessed it: Hundreds of emails, comments, and requests poured in.
I can’t catch up – partly because I have this thing that puts me at a disadvantage: I’m sick. At least one day per week is spent traveling to medical appointments. Lately, it’s two or three.
Don’t you feel like this too? RA makes it so hard. Sometimes, it’s overwhelming and I tell KB, “I can’t do this anymore.” I look at what I want to accomplish and how slowly I think I proceed and I say, “I just can’t do it.”
Determined to catch up, I replied to 46 personal emails yesterday. That was about half. Please read carefully: There is no complaint. I learn so much every day from patients who tell me their stories.
It never fails: Reading sad stories, I find strength and determination to improve our lives. In other letters, I receive hope and comfort to share. Either way, God uses others to fill my cup to go on with new resolve and optimism. God is good. He knows what we need.
There are so many things I want to do and plan to do to fight for RA health. Blogging about RA is the start. I truly believe that we can make a difference together and that we have already had an impact.
Below is an excerpt from one letter. The writer wanted her story to be shared to help others. It helped me and I hope it helps someone else.
An email blessing from health blogging
I also would love for you to post this if you like in a manner that would protect my name. … I find I no longer have that swagger in my high heeled black boots. They have been replaced with the most unattractive pair of shoes that I have ever seen. lol. …I write this on my day off as I come back from the rheumatologist in tears over the outcome of my appointment. I am a 46 year old wife and mom who has battled RA for over 10 years, however, last year did me in. I have used everything from Enbrel to Humira. I am now on Orencia only to find at my visit that I am getting worse and need to start Rituxan.
With each time I am told that I have to try a harder drug, I cry into a towel in a room, research like mad on the computer, cry more, and then toughen it up and do what I must. I swear at that moment that I just can’t do it anymore, I can’t hear anymore, I can’t, but something turns the switch back on and says, “Get it together, this is what you have to do and you will have peace with it.” I remember crying over Enbrel… I find your articles and research a constant encouragement when I think that I have gone mad… I am a professional that is loosely holding on to her profession and I just wanted you to know that as I just walked in the door and switched on my laptop, I went right to my favorites (RA Warrior). Kelly, you are an inspiration, you write from the heart, and you remain positive which is what I try to do with a disease that I call the ultimate betrayer. One minute you think your having a good day and the next you are flat on your back. Or, you get the comment that you look so healthy that nothing could be wrong with you. Guess it’s all smoke and mirrors what will be drained from the good old synovitis in my joints today at my next appt in a few hours on my day off.
Today I felt like giving up as I drove out of that hospital parking lot. What I mean by that is just giving in to the disease and what people think I should behave or be like. I always, always get hope from reading your work. Thank you I tell you with a tear in my eye. I know however, that I will be my normal joking self in a day or two after the initial shock of the news today and the fact that my spirit is so strong that I actually thought that I was getting better. Not to worry.
Recommended reading:
- Do You Love a Rheumatoid Arthritis Patient?
- Managing Rheumatoid Arthritis: Transparency and the Wall
- What is a Rheumatoid Arthritis Flare?
I find both your post and your reader’s post resonate with me. I, too, have had an undulating course of this disease, and I, too, have recently been told I have to add another medication – Remicade – to my warchest. This is the ONLY biologic that Medicare will cover, so I’m hoping it will do the trick. I’m trying to be hopeful, but – BUT – nothing has worked for any length of time in the past, and it is hard to gather hope up in my arms and hold it up to warm my heart. I’m worried about what it will mean if this doesn’t work. So I really feel for your writer. She’s been through one biologic after another with no lasting relief. And so have you. God bless you all.
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Wow, I am so amazed and saddened that there are others out there that feel just like me. Yesterday I just wanted to give up. I was blessed to have 4 days where I could act “normal” then it hit again without warning-no rhyme or reason. Our son is getting married in 3 weeks and I am so terrified that I won’t be able to walk. He is our “baby” and has waited until he finished college to get married. Why, OH WHY can’t I just feel “normal” until the wedding is over!! It is just so discouraging! But then, I read my Bible this morning and KNOW that God is bigger than this horrible disease and He will help me get thru the wedding and all the preparations for it.
Thank you, Kelly, for posting this readers feeling so that I know I am truly not out there by myself. God bless you with a good week.
Kristi,
We all might feel that way for different reasons. All RA is hard. It must be like a cruel joke from a great betrayer as the letter says. I can only imagine how scary that must be. And I’ll pray that the wedding goes perfectly!
You are definitely NOT by yourself. I feel like I’m by myself too. In the last five yrs, I haven’t had one of those days when I could act normal – unless I stay on the sofa or in bed. At times I feel like no one even believes me because most others have those days. RA is so isolating. Guess that’s why I feel it’s so important that we let each other express how it affects us.
OH MY GOODNESS!!!! Other than the poster’s age, which really isn’t too far off from mine, I could have written this myself TODAY! This is EXACTLY how I was feeling today. Normally I am not like that, I trudge through my day, smiling; I work full time in the medical field. I take care of sick people all day, prescribe them meds, make them feel better. They thank me, they’ll get better (most of them), and go on with their lives…I think…what about mine? My boss asked me the other day if I need to cut my hours back (I’ve been missing work more last month). I am scared I’ll lose my job over this disease that has taken it’s grasp on me. The last 6 months, I see myself slowly getting worse, and now I’m on Orencia as the poster was, and if that doesn’t work it’s Rituxan also…not much left to pick from…
I have learned so much from your positive attitude Kelly! I am going into today with a different attitude from reading what your poster stated…I will NOT let it win today…I will give it my all today!
Say thank you to this wonderful Warrior for writing from the heart… I needed that!!!
Your patients are blessed to have you Marie. I hope you can work for a long time.
This is exactly where I am today. Until last October I was in pain but functioning at a fairly decent level working with special needs kids. Now I’m in a vicious cycle of side effects, infections, and missing work–which may very well be the end of my job. I’m only 25 and feel like I’m 80 most days. Everyone tells me I look fine and gets frustrated that i can’t do more. I feel alone and exhausted all the time. My doc team is wonderful and surely trying to get me back on my feet. But, it feels like an uphill battle most days. It’s nice to have all of you. What am i kidding? It’s a GODSEND to have all of you. Without all of you I fear I’d be alone in this mess. Thank you Kelly for being our voice and community for wrapping me in your support. We will do this together. I am grateful for you!
I feel the same way, Beth.
I’ve been there so many times I can’t count. But I always seem to get back up again and keep trying.
Kelly, you, this blog, and the people who particpate are a blessing. Knowing I’m not alone in this struggle is just enough to keep hope alive some days.
I relate to both posts and the crying! I have cried every doctors appointment lately (the move to Oriencia is NOT working yet the doctor is ignoring me) and at work dealing with co-workers who act as though my disease is a joke and feel free to make negative comments about me behind my back because one of them as an Aunt with RA and she NEVER misses work (Can I have what she has?). “I am a professional that is loosely holding on to her profession” That describes me as well as I am far over my sick/vacation and I don’t know if my job is secure. Sometimes I do have the “poor me” attitude, I’m 33 and have dealt with this since I was 21. I am getting married this year and I am so worried I will be sick on my wedding day or during my honeymoon. Then later I think to myself that I am being ridiculous for feeling sorry for myself, so many others have had greater struggles than me, I am so blessed in life and RA has, in some ways, been positive for me – it helps to see the beauty in the simple things in life.
And another positive – with all the crying I’ve done lately I’ve become a master of the post-cry, quick makeup fix!
I just want to say congratulations and good luck with the wedding. 🙂
Thanks Kelly and thanks to the fellow warrior that authored the email. It is the experience of us all. It just makes me so sad we try so hard yet we are unable to shield ourselves from the pummeling blows that RA dishes out. Thank God we have each other.
I LOVE that comeback! I need to start using it. I must say, I’ve always been a fashionista so I do miss the heels. I wear them only when I know I don’t actually have to walk in them 🙂
WOW! That was hard to read for me. Her situation sounds almost like mine I also have had ra for ten years and my med’s keep changing and I am wife and mother also. So I just wanted to reach out to her. I will wear my heels when I can I also have been taking belly dancing lessons for over two years now it helps my arthritis and is so much fun, I have even danced in a local restaurant. I go to rock concerts with my kids when I can. On day’s I dont feel well than I rest and if I have to pay a price the next day I will. I also have a few tattoo’s to remind me that this is still my body. As for people who tell you (But you dont look sick) well I tell them like it is and I will say I dont have to wear a sign that says Im sick if you dont have to wear one that says yor an idiot. That comeback should be on a tshirt. also there is a great website for invisible disease called But you dont look sick.com I dont know if this will help but I hope it does. Not everyone has the same way of dealing with this disease but you do start to learn about putting first what’s ost important in your life, and maybe that’s a good thing.
At first I was pretty messed up on the outside, I “overshared.” Now, I live a lot internally, thru your website and facebook. It keeps me sane. If you weren’t there to be a leader for us, I would make another outlet. But, this one is done from the heart and so well – with passion. Kelly, you are god’s guardian angel, whether you realize it or not. I thank you for it.
The other night, I thought my husband was on board with me sharing, nope, he shut down, and I had to “gloss it over.” Sad that my most intimate partner can’t deal with what I am going thru. I imagine it is that way with many who deal with chronic illness. And, don’t get me wrong, I’m not like “o, woe’s me!” I couldn’t live like that. It would just be nice to have those around me understand. And, in the end, I fear, it is I alone who must come to terms with the burden of this illness for the rest of my life, no one to help me really. I have to be strong – like a warrior. Hugz to all.
I hope he does “get it” better some day. I think there are rare and special spouses who really do – I’ve come across some. Meanwhile we support each other the best we can.
Amen!! I get like this as well, and have just begun my RA journey….”resonates” was good term earlier used in comment above. The grief for your former self, and the constant “great betrayal”, are a constant reason to quit,,,,or go on. To all my rheumies…the journey IS worth it, God is good!!
Thank you as always, for posting things that are really relevant, to REAL people with RA.
Great to hear from you Russell. You are always such an encouragment.
This post was so timely for me Kelly. Last night, I cried myself to sleep for the first time since my diagnosis. I am watching my sweet boy Mack the Boxer-dog slowly die of cancer. He had a terrible day yesterday; on top of that, an arctic front blew through and literally crippled me for 24 hours. There I sat with my boy, waiting for him to be sick so I could comfort him, while barely able to hold myself upright. As I sat there, I remembered where we were just 3 years ago: living in a State Park where I was the managing Ranger, hiking 3 or 4 miles a day, working 10-12 hours 6 days a week, and still climbing the mountain road every morning for my daily “workout”, Mack at my side. All I could think was, “how did we get here…and WHY?” Was I ready to give up yesterday – absolutely! But you and I, and all these other brave warriors who continue to work, raise children, volunteer, keep house, and live rich lives IN SPITE OF THIS WICKED DISEASE … we don’t have it in us to quit. That simple. Thanks again for everything you do for the community, in spite of your struggles. I hope you get the blessings you so richly deserve.
Hang in there Jackie. I’m sorry for Mack.
You also need to talk to Dr. Gabe Mirkin. He really is a healer, and he knows what he is talking about.
http://www.drmirkin.com/joints/7989.htm
Dear Kelly I can’t believe it has been 13 years and I am just finding this site! I have wanted a place to talk and read and actually know there are people out there that know what I am going through. I am currently in a flare so it is even harder now to go through this. There are days when you think I can handle this and there are those days when you want to throw in the towel. I have been on almost every biologic along with steroids, anti inflamatory drugs and still have had both feet reconstructed and one ankle. My wrists are shot but the drugs have kept pain to minimum at times. You are so positive and I believe I can be sometimes and that is when people say oh you look great when inside I feel like I am dying! I hate this disease! But, you do have to go on especially for the others in your life…I just wish people would understand! Thank you for all the information you have provided…really makes you feel not so alone.
Welcome Megan. I’m glad you found it!
I have had arthritis since age 3 and now I am 48. It is a very bad pain. I still have flare ups. I get aggravated when I can’t do something. But I try to do it in a different way than other people do. I have had both hips replaced and both knees. The last knee replacement had to be repaired 5 times. The first doctor messed my knee up badly. Thank God for Dr. D., the new physician I have found. I am now doing intensive therapy and working hard so that I can get off these crutches. I have faith that the Lord will help me through this. The pain is endless with RA but I keep on going, I have 2 beautiful sons that are my gifts from God. The doctors told me when I was younger that I would never have children, well me and God showed them.
Thank you for sharing about your fight, Jane. I’m so happy you got to have your sons. ♥
Powerful letter from reader, it made me cry. I have been there too…but in a day or two I find the strength to keep fighting. And Kelly, I haven’t done my blog in awhile…just too sick, spending all my time being a patient, and too tired when I do have the time. But I will again…in a day or two…
Wow, I am stunned by reading everyone’s posts. Though I suffered in silence for several years in an effort to “pull myself up by my bootstraps”, I was officially diagnosed less than two months ago. I’ve got a long journey ahead. It’s inspiring to know that I am not the only one who feels like this and that I am not crazy—but that I’m trying to learn to live with a serious disease. Thank you for being here and for telling your stories. Makes it easier to put my own in perspective and stay positive when my body wants to quit.
Kelly…thanks so much for this post. I have been pretty much in bed since last Friday(today is monday) and not only cried but bawled like a baby. While I have only had this disease since fall of 09 I think many days that I can’t keep this up! I too am a professional coming close to being out of my fmla days as well. It’s scary. I am a nurse still trying to do 12 hr shifts and some days I just can’t do it. On the other take I am single mom struggling to make it financially anyway..what if I lose my job? There are so many what if’s. I needed to read this today. I know God knows our every need and his grace is sufficient….but as a human being….often I must be reminded. Praying for all you warriors out there…please pray for me!
Ahh Kelly, I feel your pain. Literally. You are such a blessing to the RA community. You are able to put in words the frustration and omnipresence of a chronic condition. Darlin’ you are appreciated!
BTW – I too am wearing possibly the ugliest shoes I’ve ever seen and am glad to have them because they don’t hurt my feet!
Having had RA for 29 yrs, with all the peaks and valleys, I can tell you that I have felt like giving up SO MANY TIMES. When a bad period goes on for years, it is hard to think that it will ever improve. Yet things always do. And then they go downhill again.
I panic when I have several really really bad days in a row, thinking immediately that this means my meds aren’t working, here we go again, etc.
Last year my meds were working, but the endless round of illnesses and infections made me so depressed. I was sick every 6 weeks for 3 weeks. I thought what is the point of the arthritis being under control if I’m too sick to do anything?
This year is better, I’ve been sick once in 6 months. The up and down, it never ends. Whether it’s the RA or side effects, or pain, etc, it is always peaks and valleys.
The only thing I’ve done is make sure I have online support (easiest to get when I’m doing very poorly) in place for the good times and the bad.
I as only diagnosed in June of 2010. Up until May of that year, I was a healthy, active 45 year old. What gets me, is how this thing just woke up one day. My hands just started to hurt. I thaught it was carpeltunnel. My doc sent me for tests. I had no idea what RA was when she gave me the news. I figured, give me the meds, fix me up, lets move on. HA!
Now I see and feel my body failing me.
I am lucky, my sweet husband has also armed himself with all the information he can. We are in this together. We have changed our plans for retirement. He’s looking for the day I will no longer be able to hold a job, so we are reducing expenses now.
But the best thing lately, was AOL revealing this amazing blog to myself, and so many others who were looking for a place to identify with. A home to share our stories, and support. I was frustrated about all the meds, and I see my sisters and brothers here have the same issues.
I realize I am only begging this journey. Theres so many more treatments I will have to endure down the road, but with the information, the ability to ask questions and get answers, I will not go into this alone.
Kelly, you are our angel. Our insperation.
Thank you, thank you, thank you!
Kelly,
As a frequent reader of your website and a fellow RA’er, I am constantly amazed at how you manage to do the reading, research, reporting and correspondence that you do. You are a source of information and inspiration and I hope you know how valuable you are to everyone with RA.
Donna,
it means so much when someone takes time to say that. It is often a struggle for me and I’m so thankful for you too.
Wow! that post almost described me exactly…. I have gone up the scale of meds. When I started the biologics, I thought this has to be the miracle drug that helps me.
Well, that was Remicade, and I had been on methotrexate almost from the beginning (about 5 yrs ago) along with several other meds that didn’t work for me.
I am now on Orencia and methotrexate, and a few other meds….and still the RA is relentless. I know the feeling of a med not working, its as if your health is slipping away, but yet you can’t give up, and so the rollercoaster ride continues.
I too, am afraid to go on to Rituxan, so I am holding out and hoping my RA will calm down. My Rheumy has told me that we need to go on to the Rituxan. I may give in because I have side issues now, Sjogrens and Raynauds.
I honestly thought I would have this RA under control by now, but that is not what happened, so I will weep at times, gather my strength and continue to push forward.
Kelly, this is my first time posting, and your site has helped me greatly, we really are “Warriors”…
Cella, thank you for posting so we can know about you!
You need to talk to Dr. Gabe Mirkin… http://www.drmirkin.com/joints/7989.htm
He is a Harvard Fellow, MD, has a longtime radio show and for years said that RA was an infection that could be cured by antibiotics. The AMA poo-poo’d him until a couple years ago when they started to take his side (as though it were the AMA’s idea, but I’ve been listening to him on the radio and getting his emailed newsletter for years so know that the AMA lies). check out the link herein, and so a search on his site for more info.
Dear Friend: When I read your story about your day yesterday…I thought I was reading about my day! I spent the day at my Rheumatologist’s Office crying and ready to throw in the towel. I have tried so many different medications for the last 5 years and NOTHING has made a difference. In fact, last year I started Orencia and ended up in intensive care with Septic Shock from being so immunosuppressed. Now mind you, many people may have great reactions to Orencia but for me…it just knocked my lights out. I am also a nurse who works in a large hospital and I swear any “bug” that can attach itself to my immunosupressed system does so and then I not only fight the RA but I fight what ever I have come down with. Be tht pneumonia, bronchitis, plueritis, pluresy, pericarditis, chronic sinusitis…and it goes on and on. I too “truck on” at work, carrying for sick patients and no one has any idea how I leave work and cry all the way to the parking garage because I hurt so much. People will say “but Kate you look so good”! They have no idea that my shoulders feel like someone is hammering metal stakes into them! So I trudge home, take a hot shower, take my pain medication and TRY to sleep because I wake up every two hours after sleeping on one side and it wakes me because it now hurts. So I roll to the other side for an hour and a half and wake up because that side hurts now. I go through this all night. Sometimes I just lay there awake all night because I hurt so bad and panic myself because in three hours I have to get up and go into work for 12 hours. After being in the hospital for three weeks last year I vowed to my Rheumatologist that I would not ever again go on any immunosuppressants and risk my life like that. So for one year I have done it MY way and HE has humored me. I now am so tired of slowly watching the disease process get worse and for the last three weeks having costalchondritis and pericarditis that I sat in his office and just cried like a baby and told…”ok, I will now come and play in your sandbox”. I don’t know what to do anymore. My significant other, who is so amazingly supportive tells me “Kate just don’t talk to anyone else about it….it just frustates the shit out of you”. And it does, last night my sister told me “now you just have to pull yourself together and go into work where your are loved and needed and not think about yourself”. Ok, blah blah blah…lot of help that was…like a kick in the teeth. So, yesterday I started Arava and I am going to just take it one day at a time. My doc told me after giving me a hug leaving his office “Kate, I am going to die killing myself trying to make you well so you don’t have to worry…you will be fine”. God bless him. To all of us…hang in there…what else can we do.