Advocating for three support sites, people ask me all the time whether I went through emotional tribulations that come with living with chronic illness and pain. They see someone who appears confident and sees the glass half full rather than half empty. On one side of the spectrum and for the most part, I have always been a person who sees the glass half full but I also have seen the glass half empty. Have I ever felt sorry for myself? Sure I have. Have I ever felt like I wanted to give up and that I couldn’t win the fight? Of course, I did and I still do sometimes. I have just learned that making the choice to see the glass half full makes my life a whole lot easier.
Chronic illnesses such as rheumatoid arthritis and fibromyalgia really have devastating effect on your self-esteem and overall well-being. Regardless of the levels of pain you’re in (big or small), the mental and emotional aspects of chronic illness are much more difficult. Chronic illness takes a lot away from you and it forces you to doubt yourself, makes you helpless and powerless and it brings with it fears and anxieties.
I do remember feeling sorry for myself and looking back, I am not sure I recognize that person. When my diagnosis came after a major flare-up (that lasted over six months), I was in no position to feel confident. I was in so much pain and that I didn’t think I could handle life. My ability to be confident was compromised and self-doubt became my best friend. Before I was diagnosed, I thought that finally getting a diagnosis would bring a conclusion to what was happening in me but I found that once I had a diagnosis, there were more questions than there were answers. I wanted peace and what I got was chaos.
That is not a part of my life I like to talk about but I share it because it is part of my road to acceptance. Newly diagnosed patients (and even those with some experience) need justification that their feelings are normal and they want to know that something – anything – will get better. Even someone like me who appears to have it all together when it comes to living with chronic illness doesn’t have it all together. Just like everyone else, I dealt with bouts of sadness and depression. I hate what RA and Fibro took from me. I hate that when I take the stairs I sometimes feel out of breath because I don’t take the steps often due to pain and also because I am not as active as I used to be. I hate all the odd symptoms that appear out of the blue and make me wonder what’s going on. I hate that I forget to mention them at a doctor visit and end up putting them off until next time. I don’t want anyone to see me as a chronic complainer. Like the next person, I do have moments of self-doubt. So, yes, I do feel sorry for myself sometimes.
When a person is first diagnosed, they struggle with the idea of acceptance. They see acceptance as somehow giving in to the disease or giving up. They also wonder if they should just give up. I remember telling myself that there is no use in fighting. Or the idea that no one believes you so you should give in and let them see how sick you are. I even remember wishing that I could just die than feel the way I did. No one ever told me I would get better – especially not my doctors. In fact, my first rheumatologist told me that things would basically get worse for me and I should push aside any long term plans. That would be the rheumatologist I fired.
I learned a long time ago that self-pity was ugly on me. It may be attractive on other people but for me, it makes me look pretty ugly. I think that when we are dealing with self-pity we don’t see how unattractive it is on us. We are too busy self-loathing to even notice but others notice. When someone is showing self-pity, what things do you notice about them? How about complaining, crabbiness and demand for attention and help? Sounds about right. In addition to having an ugly side, self-pity leads to loneliness and sadness.
As I was dealing with two new diagnoses and pain and symptoms that were also new, my family did not enjoy my self-pity stage. In fact, what I thought was lack of support turned out to be a wakeup call. Now granted, not every member of my family was expressively and openly disapproving of my self-pity stage. My younger sister came to visit after my son was born and after that major flare up and took care of me and everything else I couldn’t take care of. She never once told me to get over what I was going through but before she left to go home after my symptoms started to dissipate, she told me that she didn’t recognize me. I continued to think about those words in the days that followed.
The fact is I didn’t recognize myself. I had been through far worse than being chronically ill so what was different? The difference is that I not only felt mentally weak but also physically. I thought back to a time where I felt both and when I felt like I didn’t have anything left in me to keep going. I thought about my kids and if I was too busy feeling sorry for myself, who was feeling sorry for them? This was kind of like my epiphany or eureka moment. Additionally, my family did support me – they just didn’t support the person I had become. They knew that what I had become was self-destructive and they refused to support that. You want to talk about wake-up call! I had alienated my family at my own doing – I had a lot of bridges to rebuild and I did with time. Additionally, I finally thought about what role chronic illness played in my life. After all, I was chronically ill, not terminally ill. I wasn’t handed a death sentence; I was handed a second chance.
I know that feeling completely disillusioned after a chronic illness is part of the emotional process to acceptance and it is something that comes and goes throughout our journeys. However, when we stop just trying to cope to fully understand our illness (as I did), we can make a choice to either to deal with it bravely or we can let it crush our spirits. I know that chronic illness is devastating and the pain associated with it is pure torture. (Trust me, I know.) However, asking and seeking support is different than expecting it, complaining about it and demanding it. That is what self-pity is if you take a moment to think about yourself in your moments of weakness.
So how does one keep up the fight? You take it one day at a time. You get up every morning hoping that today is better. You don’t stay in bed and think hopeless thoughts. You live for today, you do what you can and you don’t allow yourself to worry about things getting worse. Be thankful for all the things you have rather than what you don’t have. Strive for the strength and courage to accept chronic illness with self-respect and humility. Take care of yourself and those who love you and support you. Enjoy the beauty of today and don’t spend your days worrying about tomorrow. This is all you can do and this is all any of us can do.
As I wrote the title of this post, I tried not to laugh. My rheumatologist teases about how close I am to remission but I have been close for a while now and generally my symptoms get worse, not better. The research I continue to read on remission reports that at least 30% of RA patients do go into remission and generally these are the people with the mild to moderate form of the disease. That is the category I am in right now with a moderate form of RA. My rheumatologist brought the remission idea up at my last appointment. She said that if you have 15 minutes of morning stiffness and no tender or swollen joints for at least three months, you would be in remission. However, those short periods of no more than 15 minutes of stiffness and no tender and swollen joints have lasted no more than a week. I always end up going backwards.
According to Désirée van der Heijde, MD, a professor of rheumatology at the University Hospital Maastricht in the Netherlands, today’s newer treatments along with more aggressive use of older treatments such as methotrexate, nearly half of the people with RA can – and should – achieve remission. For most of us with RA, it seems that the chance of remission is unlikely. When I think of the idea, I think of something that lasts more than a few months and I don’t see that happening for me.
Here is the other side of the coin. So, if someone achieves remission from rheumatoid arthritis, how is it remission if they continue to take medication for the rest of their life to stay to keep disease activity from returning? I read somewhere that if a person stays in remission up to one year, drug free remission is possible. For those of us who have been taking medication to treat rheumatoid arthritis for quite some time, (years, in fact) we don’t see this being a possibility. If the chance is remission is similar to the chance of being struck by lightning, then drug-free remission is like finding the Holy Grail.
I know that this may sound a bit silly but for me, RA is part of who I am. I have had it for so long that I don’t know how to be without it. It has changed my life so drastically that I can’t imagine being the person I was before RA came into my life. I am not saying that I wouldn’t mind going back to living without pain but there are other things that have happened since my diagnosis that I don’t want to change. It is also part of my identity and while I know that I would evolve with the change should I be as lucky as remission, it is hard to see myself any different than I am now. I wouldn’t mind my life being easier but I am not sure what that would be like. Feeling the pain of RA reminds me that I am human and that being human means I feel pain.
In the beginning, I just wanted things back to the way they were before RA. So, here are I am almost four years after receiving a diagnosis, and this is how things are now. There is no back before RA because that is long in past. I have found my comfort zone and I am okay where I am not. A life without RA symptoms and pain is a small possibility but the reality is that either I stay where I am at or get worse. I have not really considered remission because it is probably like my law school dream. It will probably never happen. And you know what – I am really okay with that – no remission and not going to law school. RA took so much from me but it also allowed me to become someone that I would be proud to know. The person I was before RA took so much for granted.
Speaking of taking things for granted, my younger sister that had the fire called Monday and told me that they found a new place to live. She told me up until that fire, she had taken so much for granted. She didn’t realize that her possessions were merely things that were replaceable. What is most important isn’t replaceable and for one moment, she had completely lost sight of that. Rebuilding your life is a process that often times comes from a life changing event you never imagined. Whether it is a fire or an illness; it is all the same cycle and process. Once you get past the initial shock, you can work towards rebuilding your life.
I am set to move to my new place on January 31. I am ready to move forward and past the reasons why I never felt at home where I am currently at. Many years ago, I was laid off from a job I loved very much. I was a single mother trying to make ends meet so I took the first job offer presented to me. That job never felt like a place I belonged. I never found it in me to put up pictures of my kids or to bring in items to add to my workspace to make it feel like my own. Needless to say, I only stayed there four months before I took another position. Moving to my current place kind of felt like that. That annoying property manager didn’t help either but here I am moving to a new place that I am certain I can call home. I really feel good about this. I made arrangements for the movers and contacted the utility providers. Boxes are packed and more will be packed by Monday evening. I feel like this is yet another chapter in my life I am ready to put behind me. I am moving on. With or without you, Remission.
It has been nearly four years since my diagnoses and I have often been asked how it is I manage my role as a parent while I suffer with chronic pain. This is a question that I ask myself almost daily but I know I am not alone here. There are millions of young mothers trying to make sense of motherhood with chronic pain and while the chronic pain and parenting shouldn’t go together, they often do. I used to believe that we were a minority group but it turns out that there are millions of parents out there who live with the reality of chronic pain while they struggle to raise families and to maintain a balance between pain and parenting.
Parenting is hard but parenting when you live with chronic pain is especially difficult. Parenting means you draw attention away from yourself and give it to your children because they need you. That can be difficult when you deal with daily pain and fatigue. Nonetheless, it is important to note that you are not the only one suffering from the effects of your chronic pain condition. Children whose parents suffer from chronic pain have many questions and are often insecure about the future. The best thing a parent can do is be open with children about the effects of chronic pain and while this is difficult, it is a necessity to make your child feel at ease.
I am a mother to a three year old and a preteen. My three year old understands that mommy hurts and I find that on the days that I am most stressed with pain, he responds by acting out. For example, the other night, I had an ice pack under my neck because I was having excruciating pain in my neck and shoulders. My three year old was misbehaving and when he realized he was not getting a response from me, he looked at me with the saddest eyes, laid down next to me and wanted to be held. He wanted my attention when I couldn’t give it to him. I did not know how to respond but I knew he understood and one of the things I have learned is that I can’t hide my pain from my kids. I hugged my three year old, told him that mommy’s ouchie would go away soon and that I would play with him when the ouchie was gone.
My preteen has questions about the future and whether things will get worse for me. I tell him that I am doing everything I can so that I do not get worse. He worries about schedules and routines and often asks what he can do to help. He wants to know who will take care of his brother and him and wants to know that someone will. What I have learned from this experience is that my honesty holds more clout than my telling him that “I don’t know” or that “I will be better tomorrow” when he knows that may not be true.
I don’t know what my response will be when they get older and if my condition worsens. I just know that life for them isn’t easy or normal because I am not healthy. I also know that they understand empathy and a lot of their peers don’t and probably never will. I know that they know honesty and openness and they know how to be caring and sensitive. As they get older, they will learn to deal with life’s obstacles with lessons that we have learned as a family dealing with the effects of chronic pain on our lives. For now, however, all I can do offer them normalcy as often and as best as I can.
The best any chronically ill parent can do for their children is to share their good days and good moments with their children and to prepare them for when bad pain days arise. It is also important that parents stay on top of their children’s moods and behaviors because children are just as affected by the emotional effects of chronic pain as parents are. However, children show their emotional responses differently than adults do.
I have dealt with chronic pain for a number of years now and I know how challenging it makes parenting. I have learned the importance of being honest with my children and not making promises that I cannot keep. Additionally, I know that hiding my pain is not good for any of us. First, it gives my children the notion that everything is all right when it isn’t and second, hiding it makes me irritable and short-tempered. My kids need me to be a parent despite chronic pain and I do that to the best of my ability – with and in spite of chronic pain.
As parents, we need to be the responsible for our own health and for our children’s security at the same time. That means we have to continue to be parents despite chronic pain and we pay particular attention to how our children are affected. Sometimes, that means parenting through the pain to offer them a sense of normalcy and other times, it means leaving the channels of communication open between you and your children.
This post originally appeared in the Jan. 2, 2012 Creaky Joints Newsletter.
If you have not entered the Stopain giveaway, you can do so by clicking HERE.
I was recently contacted to review Stopain Cold a topical analgesic for pain relief. Stopain is available in four formulas: Stopain Spray, Stopain Extra Strength Spray, Stopain Extra Strength Roll-on and Stopain Gel. All the formulas provide fast, temporary relief of pain and stiffness associated with arthritis, muscle aches and back pain. What it does is stop the pain and allows you to get moving again. Sounds simple, right?
The best thing about Stopain is that it goes on cold. If you have arthritis, your joints are constantly inflamed so using a cold product makes a sense. (If you have arthritis inflamed joints, you know what I am talking about.) Further, it is not sticky so it doesn’t stick to your clothes. It is also non-drip so you don’t have to worry about it dripping as you apply. Last, it has a menthol scent that you only smell when you find apply it and I don’t know about you but that is long enough.
I received the received the convenient hands free application roll-on. I loved that I didn’t have to get my hands messy. No dripping, no stinky smell, and it did not stick to my clothes. It definitely helped me with my back, neck, and should pain and muscle aches. I saw relief within a few minutes.
You can buy Stopain at most pharmacies and drug stores including Wal-Mart, Rite-Aid, CVS and Walgreens. Further, a portion of the proceeds from the sale of Stopain are donated to the Arthritis Foundation with a minimum contribution of $25,000.00
The folks at Stopain have generously offered to give one reader of this blog a Stopain formula of their choice. All you have to do is like their Facebook page and come back here and leave a comment that you did so. Leave your email address so I have a way to contact you.
The giveaway to open to US residents only and the winner will be picked by Random.org. You have until Jan. 28 at 9 p.m. EST to get your entry in. The winner will be announced the following day. If I don’t hear from the winner within 48 hours, I will pick a new winner. Good luck!
Disclaimer: I was not paid for this review. Robin Leedy Associates sent me Stopain Cold Roll-on to try out. The opinions expressed belong entirely to me.
I hope you noticed that the title of this post has an exclamation mark at the end of it. In 2008, before RA and Fibro I was wearing a size 9. For the next three years, I was buying shoes that were size 10 and 11 because my feet were too swollen to fit into my old pairs. I stopped buying size 9s when I was diagnosed and I didn’t think I would ever go back to a size 9. For the past few days, even with the cold weather, my feet not staying in my shoes – that is because my shoes are too big! Knock on wood here – but this is awesome news!
There is more awesome news! I have been having good mornings. I have woken up many mornings without stiffness and without pain. Overall, my pain has been minimal. My biggest struggle right now is the herniated disc in my lower back pushing against the sciatic nerve causing me problems with my right leg. That pain in radiating nerve pain. Oddly enough, it is tolerable. The last few years have taught me that I am capable of anything and everything. I am at a point in my life where I am I feel like I am going to be okay and so are my kids.
Last night, I spoke with my sister that lives in NYC. If you recall my last post, she lost her home and all her possessions to a fire earlier in the week. She is struggling to grasp what has happened to her. She is in shock – simple as that. I told her that she needs to stand up, dust herself off, and figure it out. That shock is keeping her from figuring this out. She lost her home – the place that she has called home for four years. She lost all her possessions and she doesn’t know how to rebuild her life. They didn’t have renter’s coverage which was a mistake but it is too late now to talk about mistakes. It is hard to rebuild with nothing but the clothes on your back but it is not impossible. I told her that she has to be willing to stand up and say “I need help” and “I won’t stop until I get it.” Right now, she is feeling like a burden to everyone around her and she wants an immediate solution. She hasn’t taken an opportunity to take hold of the situation and say, “this is what needs to be done.” I gave her a stern talk and told her that she needs to decide that she is ready to rebuild before anything can happen. I figure it this, if she wanted someone to coddle her and just listen to her say, “I can’t,” she would have called our older sister. But she called me knowing to I would tell her to “snap out of it,” and make things happen.
For every fall I have ever had in my life, I have made a choice to forget the initial shock by telling myself to “get over it,” stand up, dust myself off, and stand tall knowing that I have to go forward. I credit that attitude to everything I have ever accomplished in my life. If someone tells me that I cannot do something, I tell them “watch me.” I have stood up against some big adversaries and I won. I told my sister that I don’t know what she needs to do because I am not in her shoes, but I told her that she comes from a family of strong women and that speaks volume. Even when RA and fibro came into my life, I never once saw myself willing to let my health win. I just kept going and I know that my sister has the same in her. She needs a nudge and I am going to keep nudging until she moves forward.
I am not in remission and if even I am, it won’t last. I know that but it doesn’t mean that I won’t keep trying. When I was first diagnosed, I was told that I would be disabled by this time and I was told that I would have to give up my career at some point. So, I fired the rheumatologist that told me that. It is nearly four years later and not only I am working towards good health, I am pushing others to do as well. What happened to the woman who woke one day to the inability to walk and use her hands? She had her family by her side telling her that she shouldn’t give up. In fact, it was my younger sister (who had the fire to her home) who came and took care of me during the hardest time in my life. That is why I am having a hard time sitting here doing nothing. I feel like someone has tied my hands behind my back and hold me to do my job. Can you imagine trying to draft a document like that?
Enough about my feelings and anxieties – as many of you know, I am not the touchy feely type. I hate talking about feelings. When my twelve year old is being stubborn and talking back, I threaten to send him to a therapist so he can talk about his feelings. He is not a feelings type either so that usually gets my point across. So, despite the fact that there is no pain, my feet are still there. Just had to make sure.
Life is what you make of it, of course. Last year, when my marriage was on the rocks – so many people just expected me to walk away and file for divorce. In fact, those same people keep asking if why I am not yet divorced even though I made a decision to walk way. People have to walk in your shoes to understand what it is you are going through. At the same token, why ask such a stupid question? Are marriages easily disposable? Life has taught me so many valuable lessons and one of those is that if you are unsure of something, you probably should wait until you are sure.
One of my closest friends said to me the other day that she didn’t know or understand my situation and she was in no position to decide what I should or shouldn’t do. As a friend, her job was to support me no matter what decision I made – wrong or right, whether she approved or disapproved (that’s why I love Rhonda). I don’t know that answer or resolution is or should be but, at least for the time being, the answer isn’t that easy but it doesn’t mean that I don’t continue trying to figure it out. I don’t want things to be final if issues still need to be resolved. Simple as that and if it does make sense to some people, who cares what those people think? I am just grateful to be alive, to feel somewhat healthy, to have healthy children and to have a roof over our heads and food on our table. The rest is just small stuff and I don’t sweat the small stuff anymore.
I have an appointment with my rheumatologist on Monday. I am actually excited to share my progress with her. Even the epidural steroid injection did me some good. Don’t forget that I am a whole bunch of medications and that is probably why I have seen the relief in addition to the diet and lifestyle changes I have made. I take Humira, Methotrexate, Sulsafazine, Gabapentin and a muscle relaxer in addition to supplements. I see the chiropractor once a week and I watch what I eat. I left a stressful and demanding job for one that is less demanding. I am still, however, a work in progress. Reduction in pain means I keep the promise I made to myself to exercise and lose weight. Last, I worked really hard to better myself as a person and I am seeing results. I am firm believer that life is truly what is what you make of it.
Yesterday, I was feeling unusually depressed. Living with chronic pain, depressed moods are a part of life. In addition, I was dealing with the stress of whether my landlord would provide a good reference so that I could get the place I wanted. Lo and behold, I was approved and I am not asking how or why. I signed the lease last night and it is time for me to start packing. I also picked up some boxes and started planning.
Yesterday, I also got a phone call from my younger sister who lives in NYC. Her apartment building burned down on Monday afternoon. Her husband was home with the kids when an electrical fire started just out of the blue. She wasn’t home and fortunately, everyone made it out unharmed. Now living with various friends and family, she is trying to make sense of everything that has happened. She is trying to find a bright side and while that bright side is that her family is safe, it is hard to say that to someone who has lost their home and all their possessions. I reminded her that God only will only impose a burden we can bear and told her that my home is open if she wants to get into her car and start driving. Aside from offering her place and helping her with other basic necessities, I want to do more and I am not sure what more I can do. That feeling of displacement is the hardest thing anyone can go through. Trust me, I have been there – more than once.
Please keep my sister and her family in your thoughts and prayers. Please ask God to give her the strength to bear this trial as right now this is her biggest adversary. What she is yet to realize is that she has been through worse and this is a bump in the road that she will get past soon enough. Right now, it is hard for her to see past the loss she has faced but what she doesn’t realize that everything else is material and can be rebuilt. What she didn’t lose in that fire is more valuable than anything she lost. Her loved ones are safe and a month from now she will wonder how she got through this.
So I woke up yesterday feeling really depressed and her news made me even more depressed. I am relieved that her family is safe but I wish I was close by so that I can offer something – anything. My family is made up tough women so I know that she will get through this. We have been through worse and we have endured and persevered. When someone goes through something like this, all of a sudden your problems seem so small.
For my family, every day is a gift. Things like this are reminders that we are alive and well. I am not sure how to get my sister to see that while she is dealing with this. However, I can see her months from now looking back and knowing that she had the courage all along. The women in my family are strength and resourceful. I am the biggest example of that. I have been through a lot more than most people and I have endured. My mother has a lifetime of endurance and perseverance. My cousin is a three time cancer survivor and she just keeps going. My other sister is a Hodgkin’s survivor who had a child after she was told it was impossible. The women in my family are stronger than the men and that is how I know my sister will get through this.
My last epidural steroid injection went well. I healed from it quickly and saw pain relief right away. I still have to do one for my lower back but I need to put that off for a while as there are things are pretty hectic now. I remember when I was struggling with the first few months after the accident and how I didn’t know how long I can handle the pain but I endured and I am in a lot better place than I was six months ago. I have been through a lot in the past year and now my sister is struggling with something, and I am offering her the same advice she offered me. Just keep going – everything will work out.
Thank you for taking the time to read this and for offering your prayers. If you know anyone in the Brooklyn/Coney Island area that can help them get back on their feet, the reference would be greatly appreciated. I cannot imagine that they willl be going back to their apartment as that needs time to get fixed. They are going to start looking for new place and they will have to start all over again.
It is Monday now and I am past the epidural steroid injection and the snowstorm and it is back to work today. Despite the fact that I was recuperating from Thursday’s procedure, I still feel rested from taking a four day weekend. It was long overdue and I ended up in bed by 9 pm on all four nights. I need to work three days a week more often.
I heard from the fair housing court advocate on Friday who told me that my landlord has no intention of giving me a bad reference. I am still worried about it though. I dropped off my application to the place I wanted – the one with the washer & dryer and I should hear back sometime today. I need prayers because I am not sure I can take the landlord’s word. I had to call him on Saturday to get his son’s phone number because my toilet was leaking. He didn’t sound like he was happy to hear from me but he could just be a grumpy old man for all I know. That property manager hasn’t said a word to me since the complaint was filed but she and the landlord insist that she doesn’t work for him and that she is just a tenant like everyone else. I guess that means he pays her under the table and that they truly believe that agency relationship cannot be established. For me, it doesn’t matter – I just want to move. For the next person, it just might and their day will come.
As for the steroid injection procedure, it went well. I needed more sedation this time. They had to give it to me in the middle of the procedure. I am not sure how people opt to do without sedation. I felt the needle going into me and scraping against my spine and I responded to that so I heard the doctor tell the nurse “more sedation.” After that, I don’t remember anything. I will have to remind them about this when I go back into my lower back again. Probably next month after the move – because I will need after that. I did better than last time. I was more alert after the procedure and I spent more of Thursday with the area iced and Friday, I used heat.
I dropped my son off to school Friday morning during the snowstorm and decided I wasn’t sending my three year old to daycare. It was a really bad weather day so I am not sure why the schools were open. I spent most of the day home but after I heard from the advocate, I got a call from the leasing agent at the apartment complex reminding that Friday was the last day of the special I was interested in. So I told her I would be there around four and pulled out the application and completed it. The only problem was that my driver’s license was nowhere in sight. I looked everywhere including my car to no avail so I decided I better get a new one since I needed this for my apartment search. I also had to print out my paystubs to include in the application and there was no ink in my printer. I ended up emailing my paystubs to myself and I planned to go to the library and print them– this with a three year old in tow.
Well with the snowstorm still brewing, I went to the Bureau of Motor Vehicles and because it was during the middle of the day and during the week, I was out of there pretty quick. My new photo is worse than a mug shot. The BMV employee told me to put my chin down. How was I to do that when my neck hurt and my three old wasn’t sitting still? Yes, never take your kids to the BMV and never go when your neck hurts. I picked up my son from school and then headed to the library to get the paystubs printed out. I had to drag my kids out of the library because they wouldn’t leave. After that, I went to the apartment complex to drop of the application and information that they needed. My kids were fighting in the back seat and being in pain, I had about had it. I finally calmed them and myself down and went in to drop off the paper work, application fee check and security deposit check and went on my merry way. Let’s just say Friday was a long day. Saturday involved a leaky toilet and lugging laundry and praying I get the place with the washer & dryer. Sunday, I refused to leave the house and it was pretty cold out anyway so we stayed home and had hot cocoa. We did play in the snow briefly but we got cold pretty fast.
So, we meet again Monday. Another long work week. Today will be a long day considering the response I am waiting for and the pain I am still dealing with. I think positive thinking quote is due: “The positive thinker sees the invisible, feels the intangible, and achieves the impossible.” Winston Churchill
If you have not already, please check out my review of “How Can You Not Laugh at a Time Like This.” It is a book I am sure you will enjoy because Carla is relatable and she says the things you wished you said.
I am a firm believer in having a positive attitude despite the chaos that rheumatoid arthritis and fibromyalgia have brought into my life. As much as they have made my life difficult, I have to say I have been lucky and I definitely have no room to complain. In my journey learning to live with and accept life with RA and fibro, I have learned that I have a choice how I feel. I know that even with chronic illness and pain, laughter is there and it has to be or else we would be depressed all the time.
Carla Ulbrich is one woman who knows when to decide that feeling sorry for yourself won’t heal you. In her book How Can You Not Laugh at a Time Like This, she writes about navigating the healthcare system and coping with long term health challenges. She knows that a sense of humor can make all the difference in the world. In addition to her book, she wrote a collection of funny songs she wrote while dealing with lupus, fibromyalgia, kidney issues, strokes and bankruptcy as a result of her illnesses.
How Can You Not Laugh at a Time Like This isn’t a memoir. Instead it is more of a book of essays of all the things that helped Carla keep sane as she navigated through the health system and dealt with challenges – some from her health and some from trying to find the help that she needed.
In her essays, which she has written in a way that all of us can understand and relate to, she touches on nutrition, alternative medicine and diet. She is a strong believer in being your own advocate in a complex system where even through you are sick, you don’t necessarily know how to get better. Getting better and not getting worse means you do your research and you speak up even if that means reminding your doctors why you are there and what your ailments and allergies are. As she does this, she pokes at the medical system while acknowledging those who helped her in her recovery. She also talks about the things that are important such as phone call from a friend. The conversation was a funny one about maxi pads but the fact that her friend took the time to call her and just talk about nonsense made all the difference in the world. She found that even though she had lost everything in bankruptcy and was living with friends, she wasn’t alone. With that lesson and her sense of humor, she came back from a dark period in her life. We all have challenges. Like Carla, it is those who rise above challenges that are exceptional and Carla, you are exceptional.
Carla is also known as the Singing Patient. In addition to Carla’s book, I received her CD titled “Sick Humor” and my favorite song from this CD is titled “Prednisone.” Here are the lyrics to this song.
Prednisone will make you get real fat
Prednisone will give you cataracts
Prednisone it will destroy your bones
So get some prednisone destroy your bones today
Prednisone your moods are up and down
Prednisone your face is big and round
Prednisone will mess with your hormones
So take some Prednisone spend your life alone today
Give it to your cat Give it to your dog
Give it to your guinea pig
See em acting weird See em eat a lot
See em getting really big
Take it for your gout or if you’ve got a bout
Of poison oak or poison ivy
Take it in a drop Take it in a pill
Take it intravenously
Prednisone you start with one complaint
Prednisone now you’ve got 7 or 8
Prednisone you could be dead you know
So take your Prednisone or pick your tombstone today
Seriously, Carla says what needs to be said and she is relatable. The difference is that she actually puts it in words and takes the humorous route. In her song titled “Sittin’ in the Waiting Room,” she jokes about the variety of useless doctor visits. As I listened to this song, I couldn’t believe how much I was relating. I am so tired of the doctor visits, having to explain why I am there each and every time, telling the doctor my complaints and downgrading them because I don’t want to appear drug seeking or a hypochondriac, and just the time all these appointments take. I sometimes feel like a professional patient or as if being a patient is my part-time job in addition to my fulltime job. For example, I go to the chiropractor once a week. This week I had my epidural steroid injection. Next week, I am seeing the ophthalmologist and the following week, I am seeing my primary related the car accident and I have an appointment with the rheumatologist. How can I not laugh about being a professional patient or having a part time job as a patient? How can I not laugh at a time like this? At least I am not “On the Commode Again.” You will have to listen that one that – I am not giving any clues.
This past Thursday when I got my epidural steroid injection, the nurse had a hard time finding a vein my right arm. I laughed and asked for a pediatric nurse. Seriously, who else can find those invisible veins? I took this idea from How Can You NOT Laugh at a Time Like This’s subchapter titled “A Good Vein is Hard to Find.” After a resident is unable to insert an IV needle in one of Carla arms, she tells the resident it is time to give up.
However, I hit my limit when the resident that was overseeing my case in the hospital tried – and failed –to insert an IV needle into my arms four times. I finally put both arms behind my back where she couldn’t get to them and said, “You need to give up.” She said – with great melodrama – “Oh Carla, I’ll never give up on you.”
Once I stopped laughing, I said, “No, not on me. You need to give up on you ever getting a vein in my arm. Send me a pediatric nurse!” Kids have small veins, so pediatric nurses are good with folks whose veins are hard to find, and they use “baby needles,” which are smaller, easier to use, and hurt less.
Carla’s book, at least for me, was a reminder that a sense of humor and a sense of awareness help us to conquer our biggest adversaries. For you, me, and Carla, our biggest adversary is chronic illness and if someone can bounce back after everything that they have been through, as Carla did, why can’t you or me? We will have setbacks and challenges but ours are not different from any other setback or challenge faced by someone else. Just remember that when you are sitting in the waiting room for the seventh time this month or when you are at the toilet again because of medicinal side effects, you are alive, you are loved by someone, and you are not alone.
Some Carla Links
Lupus, Wellness & Humor blog
www.singingpatientwellness.com – health coaching
www.youtube.com/user/carlaulbrich- funny medical songs
Being a busy working mother, I sometimes wonder what is missing in my life. When I take the opportunity to reflect, I realize that nothing is missing. I have two wonderful and healthy children and I thank God every day for that. I have a good paying job and we have a roof over our heads. I don’t have perfect health but I am living just fine despite that. I have a chronic illness and things could be worse but they are not.
Many years ago, I experienced a near death experience. It is not something I like to talk about it but the fact is, it happened and at that time in my life, I was going through so much that its effect on me was forgotten. I would be lying if I said that I don’t let the craziness of life get in the way of my seeing the big picture. I have to look for these moments when I feel sorry for myself. If anything, they are teaching moments.
Like most people these days, I have more bills than I do money. I want to give my children so much of what I didn’t have. We were seven kids and my parents did the best that they could but we were poor. I know that I have it a lot better than my parents do but sometimes, living paycheck to paycheck doesn’t really cut it. More than anything in the world, I want to take my kids on a vacation but at the same token, my kids are probably not ready for that. My youngest is 3 and my oldest would probably enjoy it but chasing after a three year old wouldn’t make it a vacation. In a few years, things might be better off financially and I can start worrying about it then. Besides a vacation means I spend time with my kids, I can still do that without a vacation. What I want, I already have so I have so much to be grateful for.
Recent events in my life have shown me that we shouldn’t take anything for granted. Losing my brother and having RA and fibro – it is hard to believe that others have it worse than I do. But it is true, they do. My issues are just obstacles and I have no place to complain when others have lost their jobs and homes. Who I am to say that I have it hard? Some people have nothing left but their faith in God to guide them and to give them courage and strength to keep going. I have so much more and I so very grateful for what I have.
In the first few months as I grieved my brother, I questioned my faith in God. For a long time, I wondered what lesson there was from a young man suffering from the most painful kind of cancer and then to have his family’s hopes crushed with little hope of remission. What did he do to deserve that fate? What did we, as his family, do to lose him at such a young age, before he had time to even get married and have a family? He didn’t get the chances that I had – why him and why not me or someone who had already had those opportunities? Adversity was staring in me the face and all I could do was complain. Who had I become? While I did rise to the occasion, I didn’t accept what I was handed to be. Instead, I choose to fight the inevitable. All that strength I had conjured up when I made a decision to be strong was my enemy in the end because I feel apart after we lost him. I didn’t realize it right away but I started to feel it when his battle with cancer was nearly over and within a week after his death, its effects really started to show on me. I remember falling to the floor when the doctors told us that his battle was ending – there was nothing left in me to fight. I had fought the battle and lost. I was yet to realize what my fight was all about.
If anything, it occurred to me that this test wasn’t my brother’s – after all he embraced God and we were still here. The test was ours and whether our faith would crumble as a result. As I grieved my brother, I thought of those less fortunate than us. My brother had his family around him when he was in the hospital and when he took his last breathes. How many people die alone without this gift? We got to forgive and say goodbye. How many people don’t get that opportunity? I mourned my brother with so many people by my side and even when everyone went home, I still had my family. How many get to mourn loved all alone? I felt ashamed of myself for doubting my creator’s gift.
My brother may be gone but never once did God let me down and above all, he reminded me I wasn’t alone. He gave the opportunity to spend with my brother and that was something I had for so long taken for granted. I would go weeks without talking to him knowing that he was nearby and I had nothing to worry about. When he got sick, I was there every evening by his side. I showed how much I loved him and he was able to show me the same. He saw me stand up for him like a big sister should. I gave him a gift and he gave me the gift by allowing me to be by his side. I was given a gift that would guide me as I mourned that loss. I remember looking around in the surgical ICU and seeing patients who had no visitors. One man even passed away without any loved ones nearby. Sometimes, it takes seeing a different view to see how blessed you are. I always hated that I had such a big family but that annoying big family saw us through the hardest time of our lives. The mere fact that I have that and others do not is a tremendous blessing.
So sometimes, I have to stop and ask why myself “what do I have to worry about?” If each of us takes a moment to look at our situation closely, we realize that compared to what others are going through, we have it easy. And if I am still worried, is there a solution should such a horrible thing happen? Of course there is, there always is. Taking a look at my current situation and what I have dealt with in the past year, we are okay and we will continue to be. I have weathered many tough storms and while something seems difficult as I am dealing with it, there is always a bigger plan in the end. I remembered rushing to the hospital after work to be with my brother and getting home when my kids were asleep. I was living on few hours of sleep, barely seeing my kids, and going into work every day. I didn’t have to do all these things but I did because I wanted to be by my brother’s side. It was God that gave me the strength to deal with all those days and maybe my RA and fibro were hiding or was God working behind the scenes, but I don’t recall being in pain despite the lack of sleep and huge amounts of stress.
Don’t wait until something bad happens to show your appreciation for others and for God. Try to make the effort every day to think good thoughts, continue to pray for this, and show those you love them how important they are to you. After all, our life here on earth is short. Remind yourself every morning how grateful you are for being alive, for the aches and pains you feel because it means you still feel something, for the annoying teenager who spends all day in his or her her room because at least they are where you know they are okay, and for that annoying husband who doesn’t always take the trash out because at least he is alive and breathing to remind you how annoying he can be. Be grateful, you are not missing anything and neither am I.
Tomorrow, I am going for a second steroid injection in my neck. I really hate the anesthesia they give you. They say you are awake for the procedure but I usually come out of the procedure room with no memory of it. The first injection in my neck (and my second time getting an injection), I slept for three hours in the recovery room. I slept like a baby and it was the most peaceful sleep I had gotten in a long. Go figure. Anyway, I am still debating whether I should ask them to do the injection in my lower back rather than my neck. The past week it has been my lower back bothering me with that herniated disc putting pressure on my right hip all the way down to my feet. Needless to say, it is not a pleasant experience. The chiropractor recommended a nerve study. I really hope he was joking. Anyway, the injection means I will be off work tomorrow and Friday giving me a four day weekend, enough time to recuperate before the next injection. I cannot believe I wrote “before the next injection,” but sadly, it is true. There will be other injections and all I want is my life back but for now, I will count my blessings.
I haven’t had a moment to myself and this is what it has been like these days for the most part. I am starting to look for a new place because my lease expires at the end of February. I am not a last minute person so I have already started looking. I like to plan and I hate when my plans fail. I like to have time to regroup myself if things don’t work out as I planned. If you have forgotten, I had filed a fair housing complaint (due some singling out issues with the property manager) and the only thing I am asking for is a good reference. The negotiations between the landlord and the fair housing advocate have started and I need answer this week so I can put my application in for the place I want to move into. As a result, I am a nervous wreck. I have to wait for a response from the advocate and then once I get that I have to submit my application and then I have to wait for their approval. It is nerve wrecking to say the least. So, I am crossing my fingers and I need your prayers.
The place is about $100 more than I am paying but it has a washer and dryer and because I have RA and fibro, I am pretty tired of lugging my laundry to the Laundromat and having to wait until the weekend to do it because I am busy during the week. Even if I didn’t have RA and fibro, it would still be overwhelming because I am a working mom. (You know the term “working mom” is so redundant. Think about it: aren’t all moms “working moms?”)
My right leg is bothering me again. This is from the herniated disc in my back. It goes out on me sometimes. I cannot do is use it alone or even stand for too long. If I have to put my left leg up for some reason, my right leg cannot take the wait. Plus, this upcoming Thursday I have an epidural injection for my neck. The past few days my neck has been behaving and it is my lower back that has been a problem. However, if I ask for the injection in my back, you know my neck pain will come back in full force. I have had problems with my right arm as well as a result of the herniated disc in my neck and sometimes, it is so hard to lift it when the pain my neck worsens. It is have been over nine months since the accident and I am still in pain. I don’t think I will ever recover from these injuries.
Also, this past weekend I was dealing with a flare up. It lasted from Friday through Sunday. I am still dealing with the remnants of the fatigue from it. My RA always comes back in full force during the winter months. My fibro too but I don’t always notice it because my RA and neck and back pain are always worse. I spent most of my weekend looking at apartments, doing laundry, cleaning house and resting as much as I could. I have RA – I know that but the world and my life don’t stop because I have RA. Sounds like an RA medication commercial, doesn’t it? Think about it. People like me in their 30s and 40s are the face of RA. I am not saying that older people and young people are not. I am just saying that we are the majority group and because we are raising families and trying to focus on careers, we are often tremendously effected. Being stricken by RA at a time in my life that I don’t have time for it is unfair. I am not saying that I have not learned many valuable lessons here or that I haven’t accepted RA. I have but I still think it is unfair.
Tomorrow my older son turns twelve. It is hard to believe that he was only a baby yesterday. Since my youngest came into our lives, he has grown up and matured so much. Sometimes, I cannot believe my eyes. He is growing up into a wonderful young man. He is kind and considerate, he is compassionate and honest, and he is just plain amazing. In a year, he will officially be a teenager and I have always worried about the teen years but you know what? I think we will be fine. I raised great kid and I did it without his father – a father who has never asked about him since I walked away from my marriage when my son was only three months. I always say it is his loss and in the past I wondered if I did the right thing by walking away from my ex-husband and pursuing full custodial rights. I don’t any more. I don’t have regrets. My son turned out to be this great kid because I raised him and I don’t think that would have happened if his father was in his life. Happy Birthday kid! You are the best thing in my life.
Here is the Monday morning horoscope:
Remember that it is OK to change your opinion, Lana. You may pride yourself on being the solid one who always has an answer, or knows exactly where she is going. You may look upon others as flaky, indecisive, or fickle. It is important that you don’t shut down your thinking process after having made a decision about something. Keep your mind open to the changes that occur around you – and maybe you yourself will have a change of heart.
As you many of you know, I am stubborn so as usual, my horoscope is right. Definitely, a great piece of advice to the remainder of the horoscope. Capricorns are stubborn by nature and as a result, it makes them decisive people. I am not good at changing my mind. Before I make a decision, I do my research – simple as that. The only time I change my mind is when I pursue additional research and my perception of the situation changes. That is the legal person in me. I was trained to focus on the facts and leave the emotions out. It is easy to do that outside of my own life. When it comes to my personal life, my emotions are always in full swing. For God’s sake, I cry when I watch “Grey’s Anatomy.” I mean who wouldn’t when Meredith and Derek got their baby back?
I have also been busy with other things. Some of you many already know, Alliance Health launched Rheumatoid Connect before Thanksgiving and asked me to advocate there as well. About a week ago, the Facebook page for it was set up. I set it up with some help – contrary to popular belief, I am not that tech savvy. I also launched a new blog called Adventures in Chronic Illness. It will be just an informative place for information about chronic illness, fibromyalgia and rheumatoid arthritis. This blog has become true to its name. I am living life as I see fit and there is more to me than just RA and fibro. I made that decision last year and I kept my promise there.
If you notice I am not around, don’t worry. I am busy trying to get moved and dealing with a whole bunch of other things. 2012 is my year to grow professionally and while there will be setbacks, I will continue the course as always do. I am no longer in college but I am still working fulltime, still advocating and still playing Mom. In 2012, my plan is focus on my career and it may mean less hours at the office and more time advocating and being Mom but we will see what happens. I have slowly been moving away from workaholic mood to me mode for quite some time. Soon, I will be bragging about all the moments I have to myself.
Living with two chronic diseases, I know about sacrificing. Since chronic illness came into my life, I have had to make sacrifices. I wanted to go to law school and I had to give that dream up. In addition, I had to give up a high paying job. I used to love to spend time outdoors but I can’t participate in a lot of activities that involving being outdoors. I also don’t have a lot of energy and I live with pain. I have stopped participating in family functions and school activities that I would have otherwise participated in before chronic illness. I had to change jobs because my old job was stressful and I have had to make changes my lifestyle and diet. These types of sacrifices I can accept. There are other sacrifices I am not willing to make.
First and foremost, I won’t sacrifice who I am. I know that people rely on me to be there for them. If that means giving up time for the outside world, that is fine with mine. I have stopped caring what other mothers think of me because I am unable to participate in school functions or what relatives think of because I am unable to attend family events and in the past, I used to care what people thought, that is no longer a worry of mine. I refuse to put other people’s needs (and opinions) ahead of my family and mine’s unless it is absolutely necessary. I know who I am and chronic illness won’t change that. If I can help, I will but I am not going to go out of my way to please others when I cannot. However, I am not willing to sacrifice myself or my health to do that. Not being able to do that doesn’t change who I am.
Second, I won’t sacrifice my children. I have two very active boys who need me to be their mother, with or without chronic illness. I have to work to keep a roof over their heads but I work 8 to 5. The minute I leave the office, it is about them and me. When they are tucked away in beds, I will log on to my advocacy sites and other social media sites but outside of this, I am their mother, first and foremost. I continually try to pace myself so I am able to spend time with them and I take time to rest so I don’t become stressed.
Third, I won’t sacrifice my family – that includes my mother and my siblings. They come next after my children and my integrity. That is a lesson I had to learn the hard way. My mother and my sisters are my closest friends and before I make a commitment to anyone else, after my kids, they come next. If mom needs my help with something, I do my best to accommodate her or a sibling should they ask for help and I am available.
Last, I won’t sacrifice my faith in God. I won’t let chronic illness keeping me from believing in God even when my prayers aren’t always answered. I used to wonder why someone like me who constantly goes out of their way for people would have my life put on hold because of chronic illness. I have struggled with my faith for a long time and had many tumbles and near misses along the way but I am finally at point where I know that God is my friend. I am grateful to have that. I remember seeing a bumper sticker a while back that said: “Those who plan to seek God in the 11th hour die at 10:30.” I don’t want to die at 10:30 without having had a good relationship with God.
In the first year following my diagnoses, I didn’t realize where I would be three years later and the positive outcome of what I gave up. Yes, I gave up law school but I became a patient advocate and I am actually helping people who deserve it. Who was I helping by working in law firms that represented corporate entities? I didn’t go into the legal field to make money, but I quickly lost sight of my goals. Yes, I became less busy and chronic illness put a halt on my career but I have more time to spend my kids. I will take that over pushy attorneys and business suits any day. I was always complaining I didn’t have enough time for my kids, and while, my prayers weren’t answered in the way I wanted, they were still answered nonetheless. After I was diagnosed, I wanted to God to somehow fix me – without realizing that if he fixed me, I would go back to being busy and having less time for my kids. God doesn’t always grant prayers because he often knows what is best for us better than we ever do. Further, chronic illness has taught me, instead of asking why; to ask what does God wants to me to learn from an experience. If anything, my relationship with God has grown since RA and fibromyalgia came into my life and my family and I have gained so much benefit from that.
I am not here today. I am guest blogging at Creaky Joints. My article is titled “Parenting with Chronic Pain.”
It has been nearly four years since my diagnoses and I have often been asked how it is I manage my role as a parent while I suffer with chronic pain. This is a question that I ask myself almost daily but I know I am not alone here. There are millions of young mothers trying to make sense of motherhood with chronic pain and while the chronic pain and parenting shouldn’t go together, they often do. I used to believe that we were a minority group but it turns out that there are millions of parents out there who live with the reality of chronic pain while they struggle to raise families and to maintain a balance between pain and parenting. READ MORE.