Last week I had a bad flare, one that made it at times hard to sit and hard to hold my arm up to the keyboard and mouse. We had 4 or 5 days of rainy weather, I lost track. Friday through Sunday was my worst days; I am not sure why cold or rain aggravates my Rheumatoid Disease (previously known as Rheumatoid Arthritis) but it always has. It was pretty frustrating because I had work I wanted to get done and the rug was pretty much pulled from out under my feet with the “flare”. Rheumatoid Disease is not something I can control; even medication does not make me “flare” free, even during a “remission” period.
During the flare the pain was so high I started to experience anxiety which was high during that weekend and took over a week more before it was completely gone. Even more frustrating was today when I realized I had Flexeril muscle relaxers that would have probably reduced the amount of pain I was in but I did not even think about them. To try to explain how bad the anxiety from the pain is, I started watching just the food network. How can that cause additional anxiety? Well the cook was making some chips and some were from sweet potatoes, but they were white. I had never seen white sweet potatoes so I was feeling upset that she was smiling and cutting up these sweet potatoes that did not look like sweet potatoes to me. Also Lloyd mentioned to me that he picked up a TENS unit for me to help reduce pain and I was upset that he was getting me something that would electrocute me. I really wish I would have thought of the Flexeril hidden in a drawer but the pain went up so quickly and I was too exhausted to think about them.
Rheumatoid Patient Foundation (RPF) announces the establishment of Rheumatoid Awareness Day to be held each year on February 2. The first one will be held in 2013 on the same day as Groundhog day. “Compare disease onset to the moment the groundhog comes out of his hole to look for his shadow,” says Kelly Young, founder of the RPF. “It’s impossible to predict how aggressive the disease will be or whether treatments will be effective. The six weeks that the groundhog forecasts correspond to the short window of opportunity for people with rheumatoid disease to get early diagnosis and treatment, which has been shown to be a crucial component of positive outcome.”
Rheumatoid Awareness Day will help give people with the chronic illness known as rheumatoid arthritis, or rheumatoid disease, a day of recognition. Because the disease is commonly presumed to be a type of arthritis, awareness is lacking, causing problems with disability accommodations, clinical care, healthcare reimbursement and research funding.
For information on how to support Rheumatoid Awareness Day, visit http://rheum4us.org/rheumatoid-arthritis-awareness-day/. You can also find more information in the announcement on RA Warrior here: http://rawarrior.com/1st-rheumatoid-disease-awareness-day-groundhog-day-2013/.
2012 Improvements and Discoveries
2012 was an interesting year with a lot of changes. The addition of taking the sleeping pill called Ambien increased my quality of sleep and the switch to Cimzia reduced my pain and fatigue. So 2012 was a good year but many strange things go with it, like with the use of Ambien. First I find it strange to take a drug that has labels stuck to the bottle like do not drink alcohol, take on an empty stomach and to use caution when driving a vehicle or operating dangerous machinery. Then you pull the insert out of the bag and it lists sleep walking, sleep driving, binge eating and performing other daily tasks while sleeping as side effects. Just a little crazy tell me what to do and what not to do then tell me I may do it anyway! So far we have only lost some honey mustard pretzels and peanut butter cookies with milk which caused me to have a stomach ache and Lloyd to miss out on some cookies. I wonder why I do not sleep eat fruits and vegetables? And why can’t I do some dishes and laundry while doing other tasks while sleeping? I also have strange dreams which can be a little humorous and sometimes a little creepy but I am not fighting off spiders or anything like that. Still I may need to switch sleeping pills, not sleeping as great lately but still better then I was before I started taking it.
I began the year with extreme pain in the shoulders and neck which led to me writing bad week with hard lessons and learning to sleep against the wall because laying down caused extreme pressure in my head. I still have not been able to take laying down on a bed; instead I use a neck pillow and sleep on the couch so I am propped up some. Using the neck pillow was a great discovery for me and has relieved stress in my neck. I later learned that my neck is now curved opposite of what it is supposed to be, one disc is thinning and another has slid into my spine just a little. The doc says I am fine though. I will say anytime my shoulders/neck are even a little stiff and I look up when looking down or if moving my head from one side to another I get dizzy. I also deal with pressure headaches, brain fog, breathing problems and optical migraines that increase with stiffness so it does not feel fine to me but the tests show it is no big deal.
I learned to remember to use my Bluetooth when making phone calls but even if I do that does not mean I will be great in a conversation; fatigue still happens. Now if I can remember to look at the postit notes or read reminders that pop up! I also learned bar stools are evil as they not only increase pain but pressure headaches, breathing problems, choking, light sensitivity, brain fog and fatigue. It seems to go with how stiff or weak my shoulders and neck feel because of the way the disease is attacking more than my joints. The choking and breathing problems started around the same time the stronger attack on my neck and shoulders started happening. I remembered my mother choking often when eating and drinking, I thought it was normal for a Rheumatoid Arthritis patient to deal with it. The breathing problems started happening when the choking problems started, I thought it was my allergies or asthma but have found it is related to the amount of stiffness or weakness I am dealing with and chances are greater for both the longer or more I have done during the day.
The switch from the low dose chemotherapy (Methotrexate) and the biological drug (Enbrel) to the biological drug Cimzia has been good improvement for me also. I have gone from pain 24 hours a day to periods during the day with no pain at all. I can kiss my boyfriend without a sharply increasing pain in my neck so he no longer feels like such a pain in the neck. I can walk on driveway slopes without increasing foot pain. Instead of my weekly outing being Lloyd driving me to the store for groceries, I can make it out for Business & Beer with new friends and out many other times during the week. I can get groceries on my own and drive myself around most of the time.
I forget I have my shoes on most of the time now. I can move my shoulders to the music and carry my purse. My dog is no longer losing hair; he can lie next to me and usually not cause me pain. I have even been able to pick him up more often and have him sit on my lap; he is only 11 pounds. I noticed he had learned to stay away and is now coming up to me more. I also learned both dogs will stick near me when I am in the worse pain especially if Lloyd is not around. But Hershey is not getting so lucky when I juice now, not as much falling to the floor.
Not only can I lay my arm above my head again without losing feeling in it but I was also able to workout many times during the week before the end of the year when the rain and weather change here. Cold and rain have always been something that increases pain, fatigue and stiffness for me. So I am hoping that working out will happen again as it warms up. Overall improvements over 2012 have been great even though I now have damage in my neck.
Here is another song for your music therapy list:
RA Warrior is doing another blog carnival, this one with other patients about tools that help reduce pain of Rheumatoid Autoimmune Disease aka Rheumatoid Arthritis. I am looking forward to her post as well as other patients post on what tools they use to help reduce the physical pain in their life. I have been able to compare and exchange information on items with my sisters on what works and does not work for them. We do not always agree on what is useful, each person’s RA is different so what is useful to me may not be for someone else. (Update: RA Warrior post patients ideas for Rheumatoid Arthritis pain relief.)
I think this will be my first post on this blog that links to shopping websites which will pay me on sales. I am sure I will not get rich on the money they offer for sales, in fact I will feel lucky if I reach whatever amount they require before they issue a check or payment, if your browser and antivirus software allows the tracking and if you decide to purchase within so many days while they continue to track you clicking through the link on my page. So many “ifs” in life. It is like if I can stand, if I can walk, if I can think, if I have a driver, if the test proves it, if the insurance company covers it, if if if if if. Okay, back to tools for pain.
Below is a small list of items I use to help reduce pain. I have started an Amazon Rheumatoid Arthritis relief store with items I use or think would be useful for patients that deal with long term pain as well as fatigue and all the other symptoms that go along with this disabling disease. I see they allow me to give custom text on products so this will be a new project for me, I will make sure you know if it is something that looks interesting to try or something I have tried and used with success.
Lewis N. Clark Reakt Neck Pillow – Reakt Blue - I live with this every night to sleep and use the vibrating function to sit to watch television and relieve some tension. I am very thankful for my sister suggesting it. I could only find this specific neck pillow through eBags. I purchased mine at an airport in Lisbon, it was not our favorite international trip as we went through many issues on this trip but I do enjoy the neck pillow.
Music – When in pain and to wiped out to follow along in a conversation or to watch a television show I listen to music.
Homedics Total Coverage Shiatsu Massage – At times this is too heavy for me to lift; you may have to have a chair it is always on or someone that can lift it for you. It does help relieve tension and pain in my shoulders and back.
Ben Gay, SalonPas and ThermaCare HeatWraps - The Ben Gay and SalonPas give off a smell but do help reduce pain. I have to chuckle sometimes when with Lloyd because I am sure since he is older people assume he is the user and not me. The ThermaCare HeatWraps have glue that burns my skin, I have issues with glue but have attached them to clothing, when ends turn up I still get burn marks. I was afraid the SalonPas would burn my skin but I can use them easier. I do get burn like patches when using them consecutively long term, many times the burnt and dried out skin is a lot less painful so I keep applying anyhow. I did learn you can overdose on Ben Gay style products see Death By Ben Gay.
Lloyd aka Got Baddog – For driving, picking up things, doing the dishes, taking out the trash and many other tasks. Okay not a tool but very helpful.
Carex Bed Buddy, Body Wrap - I also have an aromatherapy version of this for hands, feet and full back but the weight of them may be an issue and they do dry out and get burnt after some time. It does free you up from a plug of a heating pad. My sister recommended it to me and I have given it out as a gift and it was really appreciated by a friend that also struggles with pain in the shoulders. It is worth the price for some freedom from the heating pad.
High CBD Coconut Oil – This is a homemade coconut oil infused with high CBD marijuana. It works fast and pain levels drop instantly and I mean instantly. But very expensive to make and only last about an hour before pain levels start increasing again. Really if I could infuse it in a bathtub of oil, I would try to live in it.
Body Pillows – Notice it is plural, I have found it useful for laying on my side but they are heavy so as pain increases on the side I am laying on I will flip to the other side and moving the pillow with me is extremely hard and painful so having one on each side of me has been extremely helpful.
Wall Furnace – I can lean up against it and it is like a full body heating pad.
Table, counter and wall – I may look strange or lazy but it does reduce pain to lean on things or being up against the wall at times. A new friend suggested they would take strange over pain any day, I would have to agree!
Some other items that are helpful include:
Computer Stand to raise monitor
Mouse Pads with wrist support
Pillows, soft pillows – this may be a repeat but you can’t lose with pillows.
It is hard to deal with the pain, stiffness, optical migraines, extreme headaches, issues breathing, joints feeling like they freeze instantly in the cold air, dizziness, fluttering of nerves and so much more that comes with this disease. Music and watching others be able to clap for long periods, hop around, stand around on their feet and full of energy do amaze me and at times helps relieve the pain. With RA I have learned that just when you think you got it figured out or you can handle it, the rug gets pulled out from under you again. It is pretty exhausting. Here is another music video for those that have a music therapy list:
In November I signed up at the local gym so I could start working out again on the elliptical, it has been awhile and something I have really missed. November 15th was my first day back on an elliptical. I felt like it may cause issues with my shoulders or neck later on since my shoulders and neck has been where the strongest pain and stiffness are and the damage in my neck. I was surprised to find that my right hip was giving me the greatest pain but I was able to keep going. I did feel some pain all evening and thought I might have over done it. The second day the hip pain was gone but returned during the first 10 minutes of my workout then it went away after it warmed up and did not come back after the workout. It seems the days I am working out consecutive I do have less pain and stiffness and the days I skip I have a greater chance of feeling some stiffness. Usually more on my right side, shoulder, hip, knee, ankle and foot lately.
I have also learned not to place my hands on the heart monitor grips right in front of me; it caused a strong fluttering in my back of my neck. But I can use the handles that move to workout my shoulders or put them on the outside curves of the monitor grips. During my first remission I would go to the gym with my sister. She could go forward and backwards on the elliptical and I found I could only go forward, going backwards made my knees hurt so I just kept going forward. Rheumatoid Arthritis can make it hard, you never know when something is going to cause you pain later and sometimes all you can do is keep trying. Sometimes it is hard to know when to give it up; it is something I have issues with. I found this great motivational video being posted on Facebook the last few weeks, “They Were Wrong” and it is how I feel, when I am bitching and screaming on this blog that is because I have a hard time accepting that living with this disease is okay, it is not. I accept that I have it, I have had it for a long time, I just do not accept that it is okay and I am thankful for everyone who donates, promotes and works for Rheum4us.org to keep patients attending conferences, getting information about the disease to the media as well as supporting patients.
So I have tried to track working out by posting on Facebook how much time and miles I do on the days I go workout. I do not know that I remember every time but I try to track it that way. It has been 25 days since I joined the gym and I have went to the gym 14 days so far. I started out doing 2 miles in 30 minutes and I am up to doing 4 miles in 60 minutes. I have gone 39 miles and spent 10 hours and 30 minutes on the elliptical. I am hoping to strengthen muscles and lose some weight. I feel like my spine, shoulders and upper back are getting stronger, not perfect but I like the direction I am going. Continue reading