I have been enjoying less pain and stiffness and more strength since I started on Cimzia at the end of May for Rheumatoid Arthritis. I still have stiffness and pain daily but it is mostly at night and very low levels. I started to think about the improvements I have had since the change of treatments. Sometime in September I stopped having to take muscle relaxers, which has been nice. I also can stand on my feet a little longer, definitely have my energy back most days, and I can carry my own purse. I have been able to bowl on Xbox and do Wii fit again. I even started doing 30 to 40 minutes daily on an elliptical this past week. Oh and I can pluck my own eyebrows again, still not very good at it but I can do it!
I am very thankful for the chance to exercise again. It is very hard to deal with a disease that limits your ability to move and even lifting your own arm over your head. I am looking forward to greater improvement as I exercise and work off the weight gain over the last 2 years of flaring. I did see more improvement when I was able to exercise and work off the weight the first time I went into “remission” while on Enbrel in 2007.
Anyway I decided to make a timeline chart of the start of “remission” on Cimzia, see below.
I hope you have a Happy Thanksgiving! What are you thankful for? Here is a little more music therapy, which reminds me I am thankful for being able to bop my head and move my shoulders to the music again.
Struggling with the pain and frustrations of living with Rheumatoid Arthritis I decided to smoke again. I watched my mother struggle with an addiction to cigarettes all her life. For many years she smoked three packs a day, I am not sure how she was able to handle it, maybe she wasn’t.
So I made it through four packs of cigarettes before I quit again. The first day of smoking cigarettes I had bad stomach aches and headaches. The second day the stomach aches were less but I still had headaches. The third and fourth day no headaches or stomach aches, but I just could not stand the smell or having the feeling of needing to have another. I noticed numbness in my feet starting earlier than usual, B-12 shots have helped stop that but it was not time for the shot yet so I guess the smoking was not helping. I also had increasing congestion and breathing issues each day.
I guess the good part was I was able to see what it was doing to me, enjoyed some frozen snickers bars and still lost 5 lbs in a few short days. Also it was good to see the mist rise off the car in the morning as the sun was rising, the birds flying around, animals crawling in the trees and a hummingbird flying above the front yard. Maybe I just need to find another reason to step outside and enjoy the scenery. I have had less pain and stiffness again since the Cimzia shots, a good thing since the SalonPas patches do start burning me after using them so often.
A reminder Rheumatoid Patient Foundation is sponsoring a contest to help spread awareness about Rheumatoid Arthritis. Find out more about how you can win a Pentax Camera on RA Warrior and for the entry rules. Also Eric from Bringing Me Back Home is hoping to raise $1500 for Rheumatoid Patient Foundation, please consider helping him in his goal by donating through Causes.com.
Another song on my music therapy list:
Today I woke up to find a post on Facebook by RA Warrior, Invisible Illness Awareness Video which is an interview of Kelly Young by Lisa Copen, founder of Invisible Illness Awareness Week. It made me think about how even when the illness progresses to show the visible damage it is still misunderstood. I remember some of the struggles of the disease as my mother lived with it. Struggling myself to help her while I dealt with fatigue that doctors could not figure out and to keep up with two toddlers. At one point my mother-in-law at the time suggested that my mother needed to drink some gelatin mixed with water each day to help protect and rebuild her joints, so I suggested it to her. Of course I remember her throwing her hands up with her fingers fused like stairways going up and the look of “really”. Sometimes it is hard when I am in pain and remember her disappointments.
I know that was not the beginning of her disappointments, I also remember times she was upset that the drugs were not working. Her complaints to my grandmother about how the methotrexate did not work and the gold shots were not working either. Then my grandmother telling her she needed to keep taking her medicine and her complaining back that the doctor said it would be working by now before she struggled to get up and walk out of the room. She did not really complain often around me but I remember the few times she did.
There also was a time she was told she had to use a ball that she could squeeze to exercise her hands daily, she refused to do that complaining it was just making her pain in her hands worse. I can understand that now when every time I try to write on paper and I can only get so far before hands are on fire. But I still think there is a time to exercise and a time to rest, sometimes it is hard dealing with doing both.
It is hard to take the advice of others and even harder when it is someone that cannot understand because they do not have to deal with the disease physically or mentally themselves. I am struggling with how to keep my posts positive when I feel the lack of complaining could be just one of the reasons why there has not been much financial support for research to help find a cure for this disease. But I can say I am very grateful for Kelly Young and other RA Patients that have started Rheumatoid Patient Foundation to help support patients dealing with the disease and hopefully some day we will be able to find a cure.
At times the disease can be funny though. This morning our water is shut off while the water company is working on the water lines. I just went to the bathroom and forgot when I flushed the toilet. Then walked out and laughed that I forgot and went to the kitchen and put soap on my hands to wash them, duh.
To end here is some more music therapy for you.
Many things become a pain in the neck when dealing with a chronic pain disease like Rheumatoid Arthritis. But I am not going to get into dealing with insurance, doctors, pharmacies or people that do not understand at the moment. I want to talk about the physical pain, stiffness and weakness in my neck. This is not supposed to be Rheumatoid Arthritis according many of the Rheumatologist and medical websites. I just cannot understand how a person’s shoulders and hips can weaken so much that the joint cannot take the weight and the spine is not an issue? How is that logical? Really I need to understand how it would be logical to a doctor that the spine of a Rheumatoid Arthritis patient is not affected and does not need to be monitored? If the joints are weak then what part of the body takes on the weight? The spine right? Not that I believe that RA does not attack the spine. I can feel it there just as much as I feel it in my joints, muscles, ear, throat, eyes and the rest of my body.
Lately I have had less pain, stiffness and weakness in my neck, but it still hits me when it rains or if I hold my purse too long. Just like when I stand too long on my feet. The amount of time I can stand without pain in my feet or holding my purse is longer than a few months ago, but I still have limits. I have noticed that when my neck is in pain or feels very weak, I do get dizzy spells. I always thought it was the drugs but recently noticed it happens when the neck is stressed, like after sitting without any back support. Just like the inside of my nose swelling up, the choking, breathing issues, pressure headaches all seem to hit when my neck is stiff or weak. I still find it funny that one night I was able to find a position for my head/neck that made the swelling in my nose and other symptoms cease. I usually struggle to find a position to relieve the pain, just never notice until that night that it relieved other symptoms as well.
My last visit to my doctor I was informed that my neck x-rays showed issues with C-2 and C-3, one disc is thinning and the other has slipped just a little into my spine and the curve of my neck is now opposite of what it should be. I guess damage from the last 2 years of flares in my shoulders; I do have imaging that shows my neck was fine in January of 2010. So I started looking for more information on neck issues with other Rheumatoid Arthritis patients and found this Basilar Invagination on RA Warrior. The doctor had told me at my last visit not to worry my neck is still fine and it is C-1 that is when you have issues because it can cause brain stem compression. Well my younger sister has complained about pain there so I was a little upset and did not ask any questions. But after reading the article and following through on the link to Cedars-Sinai on Basilar Invagination which is where I see my doctor, I decided to give her a call. From the little I understand Basilar Invagination it can happen when there are issues with C-2. Unfortunately when I called and questioned her about it, she chuckled and said the x-rays show I am fine. I tried to mention to her the symptoms seem to match some of the things I go through, especially when my neck feels weak but could not get much out because she is sure from the X-rays that I am fine. Any patients that are dealing with stiff neck, pain in the neck and what I can describe as extreme weakness in the neck, what are you doing for it? What tools do you use to help relieve some of the symptoms? I would appreciate any suggestions you have. Continue reading
During my life, when I felt healthier, my mother was very sick with Rheumatoid Arthritis. Often she was in bed or just rocking in her rocking chair. I remember the bad times and good times. One of the bad times was being dropped off with my sister when we were in our early teens. We did what we always did when we arrived at her house and ran into the kitchen to see what was in the refrigerator. Was there bread? Cheese? Crackers? Were we lucky enough to find peanut butter? Are we extremely lucky to find jelly too? She was on disability and food stamps; contrary to what others may believe it is not a living and far from it. It was never a surprise to find her in bed, which was pretty much the norm with her struggle with Rheumatoid Arthritis. It is strange; I always thought it was her bipolar medication that kept her in bed, so yes I was in total shock to realize how hard the fatigue was from the Rheumatoid Arthritis. Anyway, this day was different, she called out from the bedroom that she needed the phone. We did what we always did and helped her when she needed it. But this time I could hear her telling someone she needed help before she hung up the phone. Sometime later the paramedics showed up to help her. I could hear them commenting that she had been there for awhile because the bedding was so soiled. I can’t say at that age I completely understood, but as an adult suffering the pain she felt I can understand.
Sometimes those flashbacks of what she went through during my own pain can lead to me crying and others may not understand. I am not really depressed, I may seem a bit crazy, but I am just shocked and fear that unless others learn of how hard Rheumatoid Arthritis is more this type of suffering will continue. The need for better care for patients that live alone needs to be addressed. Healthcare for patients living alone should include phone calls and visits by nurses so they can be sure the patient gets help when they need it.
What does all this have to do with churches and communities? There were also other times around Thanksgiving and Christmas that my mother would worry some and then light up with such excitement. The worry would start before the holidays as she would be hoping that church would show up with that special basket that had a turkey or ham and all the fixings. She would wonder what fixings would be in the basket with the turkey or ham. What would she do if they did not show up? If they did, would she have stuffing? Potatoes? Corn? After Rheumatoid Arthritis hit my mother I do not remember her making it to church often, but somehow those church members always knew how to find her. Maybe she signed up even though she couldn’t walk in the door, I don’t know. I just know I will never forget her excitement or her appreciation when they showed up to give her something to help her feed her family a traditional meal during the holidays. She never expected them to show up, but she surely hoped they would and was very appreciative when they did.
So on World Arthritis Day, to those churches and community members that are strong and able, please find those patients that cannot afford that turkey, ham or fixings, please keep searching to find them. I know they really will appreciate it, even if they cannot walk through that door for church or to be that productive member of your community. Maybe find out if they are able to cook that meal, if they able to join you for dinner, or if they need you to just bring them a plate because they do not have the strength to join you for the day. Rheumatoid Arthritis is a very draining disease, the fatigue is very hard as well as the pain and stiffness, which can hit at anytime. One minute we can be fine, the next we can be in pain or wiped out.
Please hear my call out and donate to Rheumatoid Patient Foundation so they can get the changes we need to survive this hard painful and draining disease. We need this organization for patients by patients to have the funds needed to make a difference in the treatment of this disease, treatment which is far from perfect.
Rheumatoid Arthritis patients here is another song to help lift you up during your pain. Remember we need hear your voice, even if it is just by clicking Like or Retweeting on Twitter what other patients are saying with #rheum. Even that simple thing will help your voice to be heard, search engines like Google see that and it will help your voice be heard even when others are writing it out for you.