I am not good company these days
I am still feeling pain after the procedure. It is mostly a dull ache in my lower back while the injection was done. I also have stopped taking OTC pain relievers because my blood pressure has been pretty high up there. In fact, it was 159/99 on Saturday which is Stage 1 hypertension. A year ago, it was in the normal range. However, after the auto accident I found myself dealing with the stress of the pain and taking up to eight NSAIDs (Usually Aleve or Advil) a day. Hopefully now, with the pain management injections and not taking any NSAIDs, it will go close to normal range again. I am sure that I can take Tylenol but I am just trying cold turkey.
Going cold turkey, however, has been pretty hard. First, there is the withdrawal. I actually thought that since I wasn’t taking prescription pain relievers, there wasn’t a problem. How wrong I was. At least, if I was prescribed something, I would have taken it in moderation (i.e. one a day). Second, I am in pain because I am not taking anything. I feel like Dr. House when he is off his pain medications. Of course, I have more willpower than Dr. House because well I have done other things cold turkey. However, the pain makes things a bit harder.
It hurts to be touched even. My 11 year old hugged me yesterday and it felt like my spine was being pushed in. I had to explain to him that until the injections do what they are supposed to do he is going to have to be gentle. I don’t think he was happy to hear that. Kids don’t really like it when they can’t show their affection. It was like when I said I was in too much pain to carry my three old year. He got sad about it and told me he wasn’t heavy.
I know that the fact I am in pain, that I am not taking anything for the pain, and that I am dealing with a stressful situation, I am not good company. On Sunday, I went to see a place and it was a place I absolutely loved. I was going to fill out the paperwork and I was told that they had to verify my rental situation with my current landlord. I used my toddler being tired as an excuse to fill out the paperwork on my own and return later in the day. I figured it made very little sense to pay the application fee when my landlord would not say anything good especially considering his property manager was constantly accusing my kids of things that they didn’t do. People are unreasonable and explaining this to them doesn’t help you, it only hurts you. Just like living with RA, explaining it to your coworkers and your employers will only hurt you.
For the most part, I am not in the best of moods. I miss my mom but she is away doing her Hajj (religious pilgrimage) and I am happy for that she is there. I just hate that life has been so hard lately. It is like I attract bad luck and maybe it hasn’t all been bad but the bad stuff seem to outweigh the good stuff. Every day is a reminder that my brother is gone and I miss him terribly. I am not sure that I will ever really come to terms with this loss. I guess I am only human for feeling like this. I used to think death was a scary thing but it we are the only ones who feel the fear and pain after a loved one is gone. My blood pressure issues and pain issues are two things I aim to resolve because the one thing I fear is my kids feeling what I feel right now. I have to take care of myself and my health for their sake. That is why I forced myself off of taking anything for the pain. I cannot allow the high blood pressure to turn into something for worse.
Anyway, if you were planning a visit, I am not good company. 
I had a good cry about that on Saturday. It was something I needed to do and once I got that over with, I felt a whole lot better. Life is stressful and often like a rollercoaster. All we can do is hold on until we are able to get off the rollercoaster. I am still holding on but this ride has been a long one.
The Health Activist Challenge
Tomorrow is the first day of National Health Blog Posting Month and you can still join. This is a great way to show your health activist skills. The topics that WEGO Health offers allow you a break from your normal routine and allow you to take your advocacy into a new direction.
It is so simple. Blog every day but you will have to get out post free days. At the end of your post, add: “This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J.” Share your links at the WEGO Health Blog and/or post on twitter using the hashtag: #NHBPM.
Go ahead and register at the National Health Blog Posting Month page and have fun.
Also, have a happy and safe Halloween!
Yesterday’s Events and a Current Situation
I went in early yesterday morning for the first of a series of three epidural steroid injections. I was sedated for the procedure so yesterday is pretty much of a blur. I spent most of the remainder of the day sleepy and not accomplishing much. Since I had the day off from work, I figured that I might as well enjoy it. I enjoyed it recuperating from the procedure and well, from life. By the time three o’clock rolled around, my energy was back even though I was still a bit sleepy. Needless to say, I am up 12 hours later and not feeling sleepy. I don’t remember much about the procedure except going into the procedure room and then being awoken to head back to the recovery area. I am not sure that I can do two more of these because they are time consuming and exhausting. But if I want relief from the injuries from the auto accident, I have to do this.
So far, I have a dull ache in my back that travels into the back of my leg. It is like I am dragging something on my lower back area. Twenty-four hours ago, that same area was much more painful. The pain is no longer sharp and shooting but needless to say, I am still not comfortable. I got used to being in much more pain and dealing with a different kind of pain that I feel like I am out of my comfort zone. It takes up to five days to get pain relief and some people start to feel that right away. There is still one or two more procedures. I am dreading the one in my neck but I am ready to be rid of the pain in the neck, the headaches and the facial spasms. Not only were the spasms painful, they were embarrassing because they happened at the worst times. I always felt like a ticking time bomb.
Anyway, I am also looking for a new place to live and the move would take place at the beginning of the year. I am not really happy where I am at currently and this is something I have thought about long and hard because I don’t want to put my kids through another move. Plus, we have all been through a lot this past year. However, the problem is one out of my control. There is this property manager at my new place that blames my children for everything even though we are never home. We are home two hours in the evening before they go to bed and a few hours on the weekend. They are never outside or even out in the entering hallway. However, everyday she tells me they made this mess or did this. The majority of the time she is blaming them for incidents that happen when we are not even home. I have an 11 year old and a 3 year old. A 3 year old cannot get into that kind of the trouble and as for my 11 year old, he is always with me and as you know, kids don’t cause trouble unless there is another kid with them and there are very few children living here – none of which are even close to his age. Plus, I know my kids and I know what they are capable of and what they are not capable of. Here is an example of the incidences, I was out all day Saturday and I did not get home until dark and she insisted that my kids were outside eating candy and throwing the wrappers outside the front door. My kids are not the kind of kids who intentionally cause trouble plus they are constantly stuck to my side. They go where I go so if they made messes that would mean that I was with them.
I had already complained to my landlord on several occasions about her and he merely gives her a warning and then it starts all over again. I hate to say it but it is a clear case of housing discrimination and the only reason I have kept my mouth shut is because the landlord has done nothing to warrant this behavior. Also, a complaint to the city’s housing division would put him in a bad place especially since this is his representative creating the discrimination. The point is moot because even if I filed a complaint, she lives in the same section of the building that I do, I would still have to see her every day after filing that. Hence, there are some things that are not worth the headache. However, I am giving my landlord notice that I am not renewing the lease. In that notice, I am going to explain why. The words discrimination will not be used but I plan on using language that hints that. The only I will stay will be if he allows me to move to another section of the building that is far away from the manager and if she is warned to leave me alone. I ended up in a screaming match with her on Saturday about her constant invalidated accusations. The winner was the one who screamed the loudest which wasn’t me because that is not my style. I also realized that her accusations were intentional. She had to have known we weren’t home all day because I was not parked out into the parking lot but she wanted to pick a fight. I stopped her by walking away. What else should I have done? The other option was to stay there and take it and I was not about to give her that satisfaction.
Here is the other thing. I am not the kind of person who causes problems so what made her center her attention towards us, I really don’t know. Well expect that nice guys finish last – that has to be it. Blame it on the nice guy but here is the other side of the spectrum. I don’t fight with words, I fight with the law and I think while she was constantly taking this approach, she forgot for a second that I worked in the legal field which means that I can spot discrimination quicker than she could spot the truth. She made a choice from day one to blame everything she could think of on my kids and I (including messes that involved smoking even though I am not a smoker, my kids are too young to smoke, and I have never had visitors who smoke) without a thought that maybe I was smart enough to figure it out.
The question is why and that I am not sure of because despite her accusations from day one, I have kept my conversations with her very short and simple. The only time I responded was when the landlord called me about a muddy stain on the carpet in front of my door which that did not exist. However, someone had trailed mud into a neighboring unit. I took pictures and sent them to him at which time I brought up all the instances where the property manager accused my kids of things they could not have possibly done. She left me alone for a month after that. Last Saturday when she accused my kids even though we were not home, she brought up my issue of going to the landlord and that is why I let her have it. According to her, my remarks to the landlord were lies and that she has done nothing wrong. That is when I realized that I had to get out of her way. I was raised to turn the other cheek and I knew if I didn’t, it wouldn’t be pretty.
Anyway, it is 4 am and after all that sleep yesterday, I am wide awake. I did take a look at two places yesterday afternoon before I picked up my kids before daycare. Of course, I am concerned about the financial situation that put my credit in a bad place and I am not sure if I will be able to rent a new place because of it. However, I will do what I can. If I need to borrow money for additional monies such as first and last month rent, I will do it. Sometimes, you have to do what is best for your kids and in this case, you get them away from a problem. Right now, my decision is that if the problem escalates, I will take action because, guess what, she messed with my kids and no one does that.
National Health Blog Posting Month
November is National Health Blog Posting Month. Many of you are health bloggers and health activists. As a result, you are always looking for new topics to blog about and to reach out to your readers. Throughout the month of November, you can provide daily posts to cover and the people at WEGO Health can help.
If you are up for the challenge, visit the WEGO blog for more information. Thirty posts in thirty days and even if you can’t do thirty posts, you can still be a part of all the fun. The topics include ideas such as being a patient, bloggers, or even just pondering your own existence. So sign up if you’re interested and the WEGO healthy people will send you details, prompts and the ways you can make the most of the month. Happy blogging!!!
Join starting November 1, 2011 in posting each and every day – about health – to share what makes you a patient advocate, dedicated leader, and all-around awesome empowered person.
Pain is an individual thing
Pain is one of the most common personal experiences that all humans face at some time in their lives. It is a subjective thing that you cannot quantify or compare because each individual sees his or her pain in their own way. An affected individual can describe their pain in terms of its source, its intensity, and how debilitating it is. The effect of pain on the person or their loved ones forces a person to find ways to resolve their pain whether it is through medicinal or non-medicinal approach. Even religion or spirituality can serve as interpretation and resolution towards pain, the response, and even acceptance.
I deal with three separate pain issues: rheumatoid arthritis, fibromyalgia, and herniated discs in my neck and back. I have non-stop pain and while so far I have not let it stop me, I have gotten to a point where I have had enough of it. RA and fibro pain don’t exist for me anymore and not because I am remission either – I am not. The back and neck pain from that auto accident back in May surpass any pain that RA and fibro have brought to my life. I have tried medicinal approaches, such as anti-inflammatory medications (Mobic, Arthrotec) and corticosteroid injections and non-medicinal, such as physical therapy and massage, to no avail. My doctor has recommended Epidural Steroid Injections in the neck and back in hopes to avoid surgery. While the pain hasn’t stopped me, it is getting worse. I have horrible headaches and spasms in my face from the herniated discs in my neck and pain in my tailbone area from a whiplash injury that is yet to heal, and sharp pain that radiates into my right leg, my ankle and foot as a result of the herniated disc in my back. I expected the pain to at least get better but instead it got worse.
I met with the pain management doctor earlier in the week. After a lengthy explanation about how epidural steroid injections, I was as white as ghost. I never really expected to be in this much pain six months after the accident and I never expected things to get this far. The procedure involves anesthesia and while it is not surgery, I have the same feelings I would if I were going into surgery. A part of me understands that it is a safe procedure but another part of me has an issue with anesthesia and epidural injections.
I am tired of being in pain. I am tired of relief that only lasts a few hours or days. I need to be me again so that I can go back to my life. My responsibilities haven’t changed but my pain has. Tomorrow is the first epidural injection and there will be one or two after that. The first is for my lower back where there is one herniated disk, the second for my neck where there are two herniated discs, and the third, if the first doesn’t give me relief, will be in the tailbone area because I still have a whiplash injury there. After these three, they will wait three months and repeat the injections if I don’t get relief. They will wait another three months after that and repeat again if necessary. If I am still in pain in nine months, I will need surgery. I want this to work because I don’t plan on having surgery because I fear disability.
Pain is not an easy thing and it is definitely an individual thing. People in my life think just because I keep going (to work, taking care of my kids, other responsibilities, etc.) that I am doing just fine. The fact is, I do what I have to do. I am not really sure what other choice I have. Well, the other choice will be to wallow in my pain and stay in bed, and that’s not my style. People don’t realize that pain is an individual thing. You cannot compare your pain to someone else’s and I think that is where the misunderstanding lies. No one’s pain can possibly be the same.
Guest Blogger: Melanie Bowen – Caring For Caregivers: Inspiration For Healing
When someone you love has a terminal illness or receives an otherwise daunting prognosis, it’s natural to focus your energies on helping them to fight his or her disease. Your social life, family life, and even professional life may suddenly take a backseat to the needs of your ailing loved one. Consequently, when people assume the caregiver’s role for months, or even years, it’s not uncommon for them to see their own health suffer. Yet, you will be in a much better position to help your family member or friend when you are feeling your best. Attaining a state of wellness that makes caregiving sustainable is easy with a few proven tips.
Remember, You’re A Caregiver And So Much More
For those of us whose dear friends or family are sick, time can be filled with doctor’s appointments, pharmacy visits, and simply making them comfortable. In the midst of all this activity, many of us lose sight of who we were before illness came into our lives. Staying connected to the activities and interests that make you who you are is an important factor in maintaining your health. Such activities recharge the heart and the body with healthy neurochemicals like serotonin. What’s more, the feelings of peace and curiosity that they elicit act as counterbalances to challenging emotions like grief, fatigue, or frustration.
Nourish Yourself, That You May Nurture Others.
No matter how noble our intentions may be the fact remains that none of us has access to an endless source of energy. Proper nourishment plays a crucial role in your ability to take good care of those who need you, so be mindful of your food choices. It’s all too easy to rely on vending machines and late night food deliveries when your days seem like a whirlwind. However, investing just a few hours each week to prepare your own healthy meals will yield exceptional benefits. Cutting out the processed sugars and carbohydrates of vending machine snacks will prevent your energy from taking a nosedive in the middle of the day. Choosing fruits and vegetables that are loaded with vitamins and antioxidants will help your body to stave off illness. Keep snacks handy that travel easily, like baby carrots, individual packets of almond butter, fresh fruit, and trail mix. Setting aside one or two evenings to prepare several freezer-friendly meals at once will greatly reduce your consumption of processed, expensive restaurant food, and may even provide an opportunity to spend meaningful time with your family.
Clarity Heals.
To seek support as a caregiver might seem like an obvious step to take. Yet many caregivers are reluctant to do so. What’s more, so many of us feel so overwhelmed by responsibilities that emotions are placed on the back burner. That’s why it’s so important to keep a journal to record thoughts, feelings, memories, and dreams for the future. For those whose loved ones have received a diagnosis of a terminal illness like mesothelioma, connecting with one’s internal experience can facilitate healthier, more rapid processing of difficult emotions, even grief. Journaling will help you to sort these feelings out and gain insight. Often, it is this healing brand of new understanding that is the most helpful of all.
“Melanie Bowen is an awareness advocate for natural health and holistic therapies for cancer patients. You will often find her highlighting the great benefits of different nutritional, emotional, and physical treatments on those with illness in her efforts to increase attentiveness and responsiveness on like topics”
Feeling Grateful and Blessed
When I lost my dad sixteen years ago, I would have this reoccurring dream that he really wasn’t dead and that it was all a mistake. In my dreams, it was as if he was never sick. Generally, I had those dreams when I was struggling with something or a decision I had to make. Lately, I have had a similar dream where my brother is still alive. The difference is he is still sick. I know I am plagued with anxiety about decisions I am currently making. These are decisions have to be made and that is out of my control. It is how I work about these decisions that are adding stress to my already stressful life. Again, in my dreams, my brother is not dead due to some mistake but the decisions I am about to make have to do with bad choices rather than mistakes so I am not really sure how the two are even related.
The dream spelled out into detail the mistake (as to why my brother wasn’t actually dead – like some soap opera) and even provided evidence that the situation was corrected. It was evidence that my brother wasn’t dead and that there was documentation to correct the documentation that he was dead (i.e. his death certificate). The evidence suggesting that he wasn’t dead was absurd as was the documentation but I was willing to believe it. Believing it meant my brother was still alive. He still had cancer through and I was working on ways to get him treated while he was just going along with what I said. He didn’t even say a word and it seemed like he was outside of his body and he was there only physically. Actually, I felt like I was outside of my body too. I thought about this dream as I drove into work today and I started to cry because it was just another reminder that my brother was gone. As I get closer to the days where he got sick and was hospitalized, I am inundated with sadness again.
Maybe the dream is a reminder he is gone or it is his way of telling me I am not alone as I make these decisions because he is watching over me. I have this bad habit of taking on more than I can handle and not asking for help. Maybe, my brother is reaching out telling me I am not alone and I am grateful for that everything. Losing my brother and living with RA all these years have taught me, above all, to count my blessings. Before I go to bed at night, I take a moment to be grateful for everything that I should be grateful for. I am fortunate in so many ways. Despite RA and Fibro, I have my health. I suffer from a chronic illness, not a terminal one and my symptoms are managed. I have my kids who are healthy (thank God), and we have a roof over our heads and food on our table. I am employed and I can provide for my family. Compared to others who are less fortunate, I am so very blessed.
After my brother died, I also learned the importance of forgiveness. That was something that hasn’t always been easy for me. Sure, when it came to those I loved, forgiveness came immediately but for those outside that ever so important circle, I often held grudges. I had to learn that forgiving is not the same as forgetting. I had to teach myself that forgiving meant accepting that that nothing in life is ever perfect and that we can get past the things that aren’t so perfect if we are willing to make the choice. Further, forgiveness was about me and not the person that I made a choice to forgive. Forgiveness meant that I was free of the grudge and the ill that was done to me. It didn’t mean that I had to let my guard down or forget the harm that was done.
One of the best lessons I have gotten out all this is not to sweat the small stuff. That is why as I make these decisions, I have to raise my hands up in the air because some things are out of my control. I can’t dwell when accomplishing daily tasks and continuing to full time is still possible despite my limitations. I accomplish so much every day despite RA and Fibro. I am not saying that it is not challenging but I found ways to balance home and family. I have had to learn to accept help and to be grateful for it even if it doesn’t meet my standards. Sometimes, that is just what you have to do so that you don’t overwhelm yourself.
My mom is leaving for Hajj on Saturday. Hajj is the Arabic term for a religious pilgrimage and Hajj is one of the five pillars of Islam. This is my mom’s second Hajj. My late brother had promised her that he would go with her for the second one. He was not able to fulfill his promise so she is taking this Hajj on his behalf. Islam allows persons to offer Hajj on behalf of a deceased person especially a loved one. They have to make their intention clear before they embark on their journey. This is important to my mom because I think that she sometimes feels like she failed my brother. I know that she understands that she could not control what happened but as a parent, I can relate. She feels guilty that she outlived him and she feels like she has to make up for this. My mom needs this and my siblings and I understand and support her. I know that this journey will bring her back forever changed and it will be a good thing because the mother that my siblings and I have known for the last ten months feels very empty inside and lost without purpose. I don’t know if this will make her whole again but it will at least give her a sense of purpose that she desperately needs. I have learned to make the choice to be grateful and feel blessed from my mother and I am grateful and blessed just for having her in my life.
A Day Late: How Rheumatoid Arthritis Affects My Life – In Honor of World Arthritis Day
Many of you have wondered why I have remained quiet over the past ten days even with World Arthritis Day yesterday. I usually wouldn’t miss an opportunity to discuss awareness but the past few weeks have been hard for me pain wise. If it is not one thing, it is another. Between RA, Fibro, lingering injuries form an auto accident, and headaches from those injuries, not sure how I am still functioning. I am still working, still doing the mom thing, and still being the person I am expected to me whether it is easy or not. You do what you have to do despite the pain because you are the only one in pain – I am sure that many of you can relate to this. Life doesn’t stop because we are in pain and because of we suffer from a debilitating form of arthritis.
I have also been dealing with other things in particular – life and the aftermath of the events of the past year. Since my brother died, it seems like even though good things have happened for me, the bad ones trump over the good ones. Someone once told me that life is like that – it keeps us on our feet so we don’t get to comfortable. I think that when my chronic pain issues get worse, I have this tendency to feel sorry for myself – pity parties. I am not a fan of pity parties but I am not actually innocent either. I have them more often than I would like. With winter time around the corner, it is no wonder we are all flaring and feeling down.
The fact is we are affected by RA and chronic pain differently. I think that while RA doesn’t change who we are, it changes our lives. My diagnosis came three years after many years of dealing with symptoms. I was 32 when I was diagnosed and since then, I have had my good days and my bad days. There are days where I drag myself out of bed and where I can barely walk but I get up and just keep moving despite the pain. I fear that if I don’t keep moving I might become disabled. The good days I can do a lot and I am not plagued with extreme fatigue. The bad days feel like there is a war waging inside of me and I have no control of the pain and other symptoms.
When I was first diagnosed, I was given two prescriptions and here I am taking a handful daily in addition to twice monthly injections. You would think I would be in remission by now but I am not. The pain has become something I deal with because I still have to live my life. I have two kids to raise and a career to focus on. If I let RA win just once, it might become a pattern and I can’t afford that. I try daily to not let RA, fibro and chronic pain get to me either. I try not to let these things hold me back or to keep me from seeing the beauty that life offers despite arthritis pain but the ability to be strong differs depending on how much I am dealing with.
Sometimes, I have to remind to be aware of all the blessings I have rather than focusing on the negatives that RA, fibro and chronic pain bring to my life. Despite all that, I am thankful for my life and I am very aware of being thankful because of what I have lost. Life is so beautiful and God, with all his kindness, put us all here for a reason. He put my brother here to teach how precious life is and how one person can touch so many lives. None of us really know why we are afflicted with illness, tragedy or loss but there is always reason. We don’t know what the reasons are but our struggles only bring us closer to God – at least that is what it has done for me and I don’t regret a moment of my life.
Arthritis pain and illness affects my life but it doesn’t necessarily dominate it. I am lucky despite RA, fibromyalgia and chronic pain. Because we are all affected by arthritis conditions differently, awareness is so very important. The Arthritis Foundation went door to door yesterday to each congressional office on Capitol Hill to send a message that arthritis isn’t acceptable and to urge our congressional leaders to join the Congressional Arthritis Caucus so that all Americans who suffer from arthritis conditions have access to treatment and prevention. All of us have a say in this and we can do this by contacting our congressional representatives to be a part of the Arthritis Caucus. We need to tell our representatives that arthritis is NOT acceptable.
Chronic pain interferes with kind of parent I want to be
The rainy weather hasn’t been pleasant to my joints, muscles, neck and pain. If you have sun where you live, can you please send some my way? The RA is flaring, the fibromyalgia is flaring and so are the herniated discs. For the past two weeks, that has been norm for me. I have been dragging my right leg around. The pain is not all RA, however. The herniated disc in my lower back is flaring and the pain is radiating into my right leg, starting at the hip and going down. It gets worse if I pick up anything heavy and that includes my three year old. He was upset that I said I couldn’t carry him and told me, “Mom, I am not heavy.” Before anyone starts, “Yes, three year olds walk but they also get tired.” It has been quite some time since I have really carried him but there are times where I have to like to put him in the shopping cart seat.
I wish I could just blame everything on RA but I can’t. The neck and back is from that auto accident back in May. The muscle pain is from the fibromyalgia and the joint pain from the RA. In addition to the joint pain, I am stiff and every joint in my body is stiff and I am extremely tired no matter how much rest I have gotten. I am dealing with multiple flare ups and it is not fun or pretty. It is a fact of life for me and sadly, my kids as well. I am not the only one that lives with the effects of my chronic pain they do too. Sometimes, I ask myself if my kids are missing out on anything. Are they?
I know one thing for sure. If I was diagnosed with RA before I got pregnant with my now three year old, he wouldn’t be here. I am sometimes sad that my diagnosis took so long but I am also grateful at the same time. While I want more kids, my RA treatment stands in my way as does the flare-up that would follow after giving birth. I went through that three years ago and while I am grateful to have my wonderful son, I don’t want to go through that again. It was a sad and dark period in my life. I was trying to be a mother and RA was stopping me. I thank God everyday that my sister was there because I am not sure how I would have gotten through those first few months.
I read once that parenting involves a lot of juggling but parenting with chronic pain is like juggling with one hand. You try to juggle with the one hand but you can’t and you feel guilty that you can’t especially when comes to the physical activities. There is so much that I think I “should” do and I can’t but at the same time I know that I am doing the best that can. One of the things I hate the most is my kids watching me struggle but sometimes it is out of my control like, for example, asking my 11 year to put his brother in the shopping cart because I just can’t do it. Sometimes, I feel ashamed that I am not as strong as other mothers and other times, I am glad that my children know empathy, kindness and support. Even my three year old knows this. He often asks how he can help and when he sees me struggling, he asks if I am okay.
Chronic pain interferes with kind of parent I want to be. I think that is the hard part. While I am a parent to my children to the best of my ability, I am not the parent I want to be. In that sense, chronic pain limits me. My kids don’t notice it because while I am not able to be as physically active as I used to be, I still manage to make time for them. So, if anyone feels this guilt, it is me alone.
The Bone and Joint Health Center at HealthyWomen
A few days ago, I reviewed the website, Reach Beyond RA, that offers resources for real life living with rheumatoid arthritis. As I noted in that prior post, HealthyWomen (HW) is a website dedicated to providing independent health information resources to women and is a national leader. HW is a nonprofit project and has long reputable history recognized by many in the media marketplace and in the health industry.
At the Bone and Joint Health Center, HW has teamed up the creators of Reach Beyond RA, to bring you a joint collaborative to help empower women with information about rheumatoid arthritis. There you will find some insightful information on managing RA, motivational tips on staying active, and information about exercises that are the best fit for RA patients.
A favorite article I came across at the Bone and Joint Health Center is titled Tips for Managing Rheumatoid Arthritis offers some great tip on juggling a busy life while living with RA. Things such as family, career, household, friends and other commitments can be especially challenging for women but when you live with a chronic condition like RA, it can also be uncomfortable, painful and interfere with your daily routine. This article offers some great information for taking an active role in managing RA symptoms while juggling all the responsibilities that life throws at you.
I also came across a Q & A section that stressed the importance of exercise towards the management of RA symptoms. The article response was medically reviewed by an expert in the field as the majority of the information on the site is. The response informs that it is important to find balance between exercise and rest. By understanding the roles that both rest and exercise present, you empower yourself to work towards control the disease. When it comes down to it, when your RA is active, rest your joints. When RA pain is manageable, exercise because being active is essential to keeping your muscles healthy and to keeping joints mobile and flexible. If you are in the pain the following day after exercising, you have overdone it. Understanding the median between exercise and rest means that you understand that overuse and under-use both cause problems so it is important to use discretion and this means you listen to your body.
Towards the end of the response to the question about exercise, a link is provided to RA exercises. This link sends you to several videos that show you RA friendly exercises. The first video, Getting off the Couch, the doctor in the video discusses exercises that offer an all body approach to dealing with exercising with RA. We are also introduced to Chaunté Smith, a RA patient, who has incorporated exercise into her management of RA. The doctor notes that it is important to find ways to adjust your routine to your RA so you can stay motivated. Here is the video below. Be sure to check out all the videos in this series. You can also go to Reach Beyond RA at to the My RA Fit Kit to customize your own exercise plan.
Another favorite section of the site for me is titled Realities of Rheumatoid Arthritis Video Series. Here you will hear from Elizabeth Battaglino Cahill, RN, the executive director of HealthyWomen, as she discusses “Managing RA: The Strong Women’s Approach,” which is an educational and inspirational program and video series. In the first video, she discusses the goal of the series and information about what the series is about. The remaining videos are available for viewing at the series page. The first of those videos is titled “RA 101.” It goes into the basics of RA introduced by several experts offering an overview of RA to include how it occurs, symptoms, and living beyond the boundaries of RA.
Being a woman in my 30s living with rheumatoid arthritis, I know all too well the limitations it poses. It has been three years since my diagnosis and I can honestly tell you that first year for me was pure torture. I had to teach myself a new way of living and I didn’t even know where to start. I felt like I had lost control of my life and I had no control of my future. As I advocate, I see this often for those in first year or so of diagnosis. After a trial and error process, experimenting with a variety of treatments, and finding what things were out of my control such as pain and weight gain, I finally found a medium in my life where I can live side by side with RA. I know the physical realities and limitations but every day I am learning that I can live beyond them. Ironically, it took me three years to get there. What I came across along my journey of trying to find normalcy is that much of the information presented to me wasn’t enough for me to live with RA. It wasn’t until I saw real people living successfully with RA that I knew that I could live successfully despite RA.
I think that it is important for all of you, women and men alike, who live with RA to learn to decipher fact from fiction. Find the right resources so that you can stay motivated. I wish that I had found a resource like HealthyWomen and Reach Beyond RA when I was first diagnosed. I had to learn about management of my disease and listening to my body all on my own and that is why I recommend sites like these. They offer a great resource for people like you and me who didn’t necessarily care about the medical information about the disease but who care about living beyond the disease.
Both these sites offer a vast amount of information about living with RA. They don’t spend a lot educating about the disease itself because most of us know more about RA than most medical doctors. Further, the creators and administrators of both these sites understand the limitations that the disease has on us. They understand the financial setbacks, the affect that RA has on your jobs, your home lives, your relationships and the fact that you need normalcy in our life. For me, it has allowed to be motivated again with being active. I had a setback earlier in the year as a result of an auto accident but I found my way back to being active despite RA. Please take an opportunity to visit the two sites and if you would like, please offer some feedback on your blogs.
