Reading others journeys about living a #rheum life, has helped me greatly in dealing with my autoimmune arthritis. These women are bright, humorous and their writing touches me. Here are some of my personal favorite.
Some of my favorite blogs:
All Flared Up! by Amanda
Float like a Buttahfly: by Kerry
And then you’re at Jax: by Molly
Autoimmune Systemic Life: Rhia
Arthritic Chick: by
Spoonless Mama: by Chelle
Hurt Blogger: By Britt
Dad with RA: by Ferhaan
Not RA specific but a great Spoonie blog:
Fashionably Ill: by Jessica
Finally, Dr. Will Harvey is starting an advocacy blog for rheumatic disease patients. I’m really looking forward to reading it.
It’s been such a pleasure being part of the first ever #RABlog week. Thank you for asking me. Please take a moment to read the other amazing blogs that participated: http://www.radiabetes.com/blog_week15/day7.html
Well done everyone!
Dear Pre-diagnosed Me,
Remember when you were 14 and your knees started to ache. You were told you had tendonitis and spent weeks on crutches throughout the years until you were 20. That sucked. At 20, you had arthroscopic surgery which showed nothing but inflammation. It took you months to recover. Your family and friends thought you were a hypochondriac because you complained how much it hurt during recovery. Yeah, that sucked, too. Then at 22 you started running fevers, couldn’t use your arms and were in pain constantly….and you were told you were too stressed and to work out more. That one sucked most of all because your doctor made you feel like it was all in your head. You didn’t have another major symptom until you were 31 and you were very unprepared.
Your pain started in your shoulders around February. You ignored it for a month because you were positive it was your thyroid levels being off that caused the muscle aches. Your doctor prescribed muscle relaxers and sent you on your way. At this point, you could barely uses your arms. Driving with your thumb only became the norm. By Thanksgiving of that year, you were unable to walk without a serious limp and couldn’t shop on Black Friday due to pain (your annual father/daughter day). Your dad took one look at you and said, ‘There is something really wrong with you if you can’t shop’. You were scared. Around Christmastime you were diagnosed with Sjogren’s Syndrome. You were told that it would take 8 weeks for medication to make you feel better. It ended up taking around 6 months.
You hit lows and serious lows over the next two years. You lost your sense of identity. You were no longer an able-bodied person. Then your rheumatologist will retire. You’ll find another rheumatologist who will tell you nothing is wrong with you because your blood work is good. He’ll want you to go off all of your medication even though all of your joints are swollen and red. When you ask why your joints are like this, he’ll respond, “I have no idea.” You keep searching and find another doctor who actually listens to you. By this time, you’ve been living with your diagnosis for 5 years. Slowly, this rheumatologist will help you find a cocktail of medication that helps you feel somewhat human again. It took almost 2 more years to have a good day. But it came. You still have flares from time to time. There are days when walking is very hard and the fatigue is overwhelming, but you also have good days. Now you are on a biologic that really works (after 5 years of ineffective step therapy). You did it. Never forget. Never stop fighting
Through social media you found others like you who wanted to spread awareness and see change within the #rheum community. You joined IAAM and cofounded IFAA. You are working with others to make a difference. Your journey is long and painful, but you are stronger than you know. Never give up. Believe!
Proud to be a part of #RABlog week. Please take a minute to read the other amazing blogs. http://www.radiabetes.com/blog_week15/day6.html
Five things I’ve learned since having RA:
1. It can always be worse. When my disease onset, I was really, really sick. Slowly, I improved with the right medication. It took a long time. I have a crappy disease, but I am at a point where I know I am better than before. I do some work as a patient advocate and I get to meet a lot of other patients living with #rheum diseases. I know I am pretty lucky and I’m grateful for that.
2. I’m stronger than I realized: I often think that people view me as being weak because I am sick. A person I know recently sprained her ankle. It was obviously painful. She stayed home from work and rested for days. She remembers that I told her how at times, I feel like my ankle is sprained. When she came back to work she made a point to tell me she thought of me and wondered how I get through the day because there was no way she could work in such pain. When you live in pain, you have no choice but to deal with it. I have to be strong because it is my only choice as a single woman living with autoimmune arthritis.
3. Communicating is key. In the beginning, I just expected that my friends and family knew what I needed. They didn’t. They actually did not know how to deal with me at all because I had no idea how to deal with the RA me. I had to be clear with how I was feeling. No one could read my mind. I began asking for help when I needed it. Instead of canceling plans altogether when I felt sick I tried to reschedule. I let others know what I was feeling. Family, friends, coworkers, and supervisors were more supportive when they knew what I needed. Communicating isn’t always easy, but it’s essential.
4. Acceptance goes a long way. When I was diagnosed I went through the stages of loss and grief. I started in denial that this was really happening to me. I transitioned almost immediately to anger and was desperately trying to find a doctor to tell me my symptoms had an easy fix. Depression set in and I hit the lowest of the low. I had seriously bad thoughts about ending things. Rock bottom hit me hard. I got myself help and eventually I as able to accept my fate. It wasn’t easy and I still struggle with it at times, but you only live once, and I’m determined to do it well.
5. RA is a part of me but it doesn’t define me. In the beginning, I saw myself as broken. I put the disease before myself. Thirteen years later and I am a woman living well with rheumatoid arthritis. I don’t hide my disease. RA is a life-changing struggle, but it’s only one part of who I am.
Proud to be a part of the first ever #RABlog week. Check out all the amazing blogs here: http://www.radiabetes.com/blog_week15/day4.html
Day 3 Assignment: Explain your RA.
*** After all these years, I still had a hard time with this topic. I decided to re-work a previous blog. So here it goes…
Living with autoimmune diseases is a never ending journey. I’ve had people tell me that “But you don’t look sick”, and “Do you know that you are limping?”…hmmmm….you really think I didn’t know that I was limping? Ok…I admit it, sometimes I don’t know…but most often, I do.
Each day is a journey because I never really know how I will be feeling. Some days I wake up and feel just fine. Other days, I wonder how I am going to make it through the day. Simple every day things like pulling on pants, taking a shower, or opening a bottle of water can be almost impossible. A good day means I can go grocery shopping after work and get items off the high shelf. On great days, I can clean my house. The lack of control I have over my body is very depressing.
When people ask me about my disease, I tell them I have a systemic autoimmune disease that attacks my joints and connective tissue. I acknowledge how painful osteoarthritis is, but make it clear that is not what I have. In addition to swollen joints and pain, my disease feels like the flu, I run fevers, I get rashes, and some of my internal organs have had damage from a combination of RA and the medications take for it. My disease laughs at OTC drugs like ibuprofen. I manage 14 prescriptions to keep my body moving. I inject myself with a biologic drug weekly. This drug cocktail allows me to have some good days.
This disease can be so depressing. There was a time when I had way more bad days than good. I think back and remember that there was a time when I wouldn’t tell people that I felt good. I always thought that I was letting them down when I suddenly wouldn’t feel good anymore. I would hear “Last time you felt good, what happened?” So complicated to explain. Now I say, “Today is a good day” when things are good. I’m so used to living with pain that I sort of feel lost when I am pain free. Not that I miss the pain, it’s just that I feel so different without it. It’s almost like my enemy is my friend…even when I don’t want it to be.
I am honored to be a part of #RABlog week. Follow the link to read the other amazing blogs included. http://blog.wegohealth.com/2015/09/21/the-first-annual-rablog-week/
Day 2 Assignment: Managing RA fatigue – We all know that fatigue is a big part of many of our lives. How do you manage that fatigue? Perhaps you like a warm cup of tea or a hot bath. We all have our coping strategies. Describe anything you do to help with fatigue.
I’ve been tired since 1999. Honestly. I don’t remember a day where I felt full of energy since I was 29 years old. Autoimmune diseases started hitting me around that age and everything sort of went down hill after that. Webster’s dictionary defines fatigue as: weariness from bodily or mental exertion. How do I describe fatigue associated with RA? It’s not easy, but here is my definition: RA Fatigue is complete and utter exhaustion caused by intense pain that occurs while simply being. No need for bodily or mental exertion at all. RA fatigue is so similar to the feeling you get from the flu that it is often difficult to figure out what is wrong in the first few days of a flare up. The fatigue is debilitating and nothing that I had ever experienced prior to being diagnosed with autoimmune diseases even compares.
I’ve tried all kinds of tips and treatments to help fight fatigue. I’ve done diets, avoided caffeine, created a sleep schedule, added salt water to my diet, used essential oils, bought a new mattress topper, etc. The only thing that ever truly helped me was meditation and yoga. Learning to quiet my mind is difficult, but the calm and peace taught me how to hold the off the pain and sick-feeling fatigue. Regardless of things I have tried or had some success with, fatigue is still my most difficult foe. It makes the symptoms of my RA and fibromyalgia that much more intense.
The best advice I can give to others like me who suffer with RA fatigue is to be kind to yourself. If you have to put your feet up on the couch instead of vacuuming. Do it. (Coincidently, I’m doing that right now!) Don’t beat yourself up over it. Be honest with your needs. Let loved ones know what you need and why you need it. Squeeze in naps. Put your feet up when needed. I used to think living with RA was the end of the world because it slowed me down so much. I might be slower, but I’m still moving.
I have a new 4 year old neighbor. He is a doll. The friendliest child I have ever met. Today he told me that he saw me leaving for work (at 7:00 am) but he didn’t recognize me. I was confused. Couldn’t figure out what he was talking about. He said, “I thought you were a girl I haven’t met yet.” When I asked why he didn’t know me, he said because I was dressed up and my hair was different. I work full-time as a speech-language pathologist and also see 1-2 clients after work every week. It’s rewarding but exhausting work. When I get home, the stylish clothes come off (especially the bra!), the jammies or comfy clothes go on, and the hair goes up. I guess jammies and a ponytail by 4:30 pm isn’t quite working for me in my neighbor’s eyes! lol
I put a lot of effort into getting ready for work. My alarm goes off 45 minutes before I have to get out of bed (morning stiffness & pain prevents me from getting up easily). I have two alarms that go off (multiple times) with the 2nd alarm being located across the room so I have to get out of bed. I can no longer shower or wash my hair in the morning because all that physical activity wears me out too much. I gave up trying to straighten my hair due hot flashes and sore wrists. Thankfully, beach/wavy hair is in style. My clothes are laid out and usually don’t have zippers or buttons to manage. My clothing, shoes, and jewelry are all well planned and easy to manipulate. My breakfast is eaten in my car because even with setting my alarm so early, it still takes me over an hour to get out of bed, and I run late. RA has forced me to organize my mornings so I’m able to get to work. But when the work day is over….my spoons are gone. My desire to look put-together is done, too. My 4 year-old buddy is going to have to get used to the baggy shirts and yoga pants. I think he’ll be just fine living near the two me’s 🙂
I’m writing this week as part of RA Blog week. I’m thrilled to be joining in with other amazing bloggers! Check them out, too!