Pain that never really goes away

I have psoriatic arthritis. I was diagnosed 24 years ago, so at this point it has been my constant, unwelcome companion for half my life. Over the years I have been on over fifty medications to relieve the joint pain, swelling and extreme fatigue that are hallmarks of PsA. I have periods of drug induced remission, where I had no symptoms at all and lived a nice, normal, pain-free life. But having a chronic condition is all about give and take, for those pain-free times, you have the times you can barely stand the pain and want to give up. Sadly…I am in a painful phase.

I am lucky that my family, close friends and co-workers (including my boss) understand my condition and the limitations it comes with at times. What may be the hardest part is when people who don’t really know or who are fortunate enough to not have experience with something like this think that I am weak or giving in to “a little pain”, as I work so hard not to allow my condition to overtake my life. I don’t wear a sign that says “Psoriatic Arthritis On Board”, I quietly go through my days, smile through the pain, walk as normally as I can and breakdown behind closed doors when it becomes too much.

Part of my commitment to my weight loss journey was to help with my condition. I am at the point that my knees are completely shot and I am needing to get both replaced this year. I wanted to be in the best shape I could be in prior, so my recovery was as easy as possible. I have lost right at 30 pounds in the past 5 months and have increased my activity level with daily walks and weekly yoga classes. My current treatment plan had been working very well and until a few weeks ago I was feeling great, knee pain aside. But the familiar downhill slide started and within the past week to ten days the pain has increased, in joints I’ve never had issues with before, and the extreme fatigue makes doing anything torture. I have no been able to do my daily walks this week and had to skip yoga. I can’t help but fear how this arthritis setback will derail my weight loss. My last flare was nearly four years ago and it took almost two years to get under control. I don’t have two years and I will not  back slide,  I will continue to do all I can to stay on track. I told my doctor it was NOT fair, I did what she suggested, but I’m still struggling. She understood my frustration, as nothing about a chronic disease is fair.

I have added a new medication to my treatment plan, but refused to add steroids, even short-term. I’m hoping, like I do anytime we try something new, that this will help and I will in less pain soon. If not, we move on to the next thing, and in the meantime, I keep smiling and doing what I can to not given in and give up!


Suck it up and smile

When you suffer with a chronic medical condition, you have two options: sucks it up, smile and face your day or give into the pain and give up. I was diagnosed over 20 years ago with psoriatic arthritis. In that time I have had periods of great pain in which each day it is a true struggle to get out of bed and face my day. On those days, there are no awards for covering the fact that my pain is winning. There have also been other periods that medications have erased all signs of the disease. I go about my day with no pain and no one around me had a clue that at any moment things can take a sudden turn.

Today is a painful day. Actually, the past several weeks have been getting progressively worse. The thing about advances in medicine are the diseases seems to advance right along with them. I have gone years with medications working miracles, to wake up one day as if I have taken nothing to manage my pain. I realize with age comes the normal wear and tear on the body, so I have two forces working against me at this point in my life. I also know that my disease is progressive, it will not “get better”, my best case is to maintain and find a treatment plan that manages my pain consistently. I am not one that likes to make it know that I have a chronic medical issue or that I’m in pain. I am not looking sympathy and asking for help has always been difficult for me. I in no way think this makes me stronger than others, in many ways its stupid to hide the truth and power through in pain when there are many wonderful people in my life who would be happy to help when I need it.

Pain does change you and those around you. I can see a change in myself from day-to-day depending on what my pain level is. I have far less patience than I used. I see my usual bubbly outgoing personality more quiet and subdued, as if I don’t want to expel any extra energy that may be needed later. I also see how my pain changes those around me. My family tends to plan around how I am feeling. I have lost track of how many outings and events I’ve missed due to my condition. I have to work, giving up on that is not an option, so my personal life tends to suffer more because of it. I’m grateful for my wonderful and loving husband who never makes me feel bad for missing things or simply needing to rest. “The Girl”, at 13, is understanding and more concerned for my well-being than she is disappointed that I’ve missed one of her sports or school events. That actually makes me sad, that my family is so affected by “my disease”, that it’s the first consideration that is taken.

Don’t get me wrong, I know how lucky I am. Not only do I have a loving and understanding family, but I am able to work and have benefits that make it possible to get the medical care and medications I need. While the pain is chronic, it’s not life threatening, so I am in a much better place than friends and loved once who are battling much worse.  Today I’m having a bad day, a day in which I want to wallow in my pain just a little, to lash out at it with words, as that is really all I can do.

Rant over. Slapping on a smile, sucking it up and powering on.