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!


Down, but not out

This week was rough. On Tuesday I strained my Achilles on my left foot, talk about painful. That same day, possibly related, maybe not, my back went out or rather, it felt like a sharp knife in my lower back. No matter the position: sitting, standing, laying down, I was in horrific pain. Back pain is what sent me to physical therapy to start with, so this sudden and more severe return of the pain caught me off guard. I had an MRI on Thursday, which showed nothing. While I’m glad that I didn’t require surgery or worse, there was an issue that could not be corrected, I hate not knowing why I’m in pain or what can be done to help. I wasn’t able to work out after Monday and with resting my back is feeling better and I am having a dry needle treatment this afternoon. Fingers crossed.

While at my doctor as a result of the pain, I was weighed. I was shocked to see the number of the scale SIX pounds MORE than when I weighed two days prior. WTH!!! I had not cheated. I had not used food to comfort me. So, before I panicked (too much), I figured it was the different scale. When I got to work, I had to check, so I hit the gym and the “official” weigh in scale and there it was, FIVE pounds more than two days prior. I won’t lie, it was a bit defeating. I stayed on track with my diet, although my water intake was a bit down for a few days. With the pain and bed rest, I didn’t get my steps in, not to mention no workouts. I feared stepping on the scale today.

Our usual weigh-in time is noon. I have my routine. Breakfast and then 24 oz of water, then no more until after weigh in. That allows my body to process and eliminate (aka pee) any excess prior to weigh in. With a 20 minute heads up, we moved weigh in to 10:00am. Ugh. I had just downed my water. Seems like a no big deal, but motivation is key to staying on track for me. I held my breath, stepped on the scale and was relieved to see the five pounds from last Wednesday was a fluke and I was down 1.6 lbs. Just shy of my weekly 2 pound goal, but still down.

But wait…there is MORE. I opted to recheck at noon, sticking to my normal routine and I was down 8 additional ounces!! So I did meet (and exceed) my 2 pound goal and over all I am down 12 pounds in 3 weeks!!!


The painful road to healing

Over the past several days I have been thinking a lot about the path to healing, both physically and emotionally. For me, I have been battling  physical pain, to the point I am seeing a physical therapist to help alleviate or manage my pain. This process very much falls into the “no pain, no gain” category, as I am in more pain now as I am working muscles and pushing myself in ways I’ve avoided for a long time.  I am confident that sticking to the program and trusting in my therapist things will get better.

On the emotional side, over the same few days, the situation with my friend Jane’s stepdaughter Mary has taken a painful turn. As I have talked about in many previous blogs, Mary is not a typical 16-year-old girl. She is very withdrawn, makes no effort to fit in socially and claims she has no need for friends or relationships with anyone who doesn’t share 100% of her interests. She is very artistic and talented, yet prefers to create and keep her work to herself, not share with others, even family. Unlike most girls her age,she has no interest in clothes, opting to wear the same clothes day after day, regardless of how dirty they may be. She will go days without showering and even when she does, usually to appease her father or Jane, it is obvious she has not used soap or washed her hair. To say the girl is a “mess” is both figuratively and literally true and an understatement. Since I have known Jane, Mary has transitioned from family therapy to one-on-one therapy, seeing both a therapist and psychiatrist who prescribed an anti-depressant/anxiety medication to help her manage day-to-day without completely shutting down emotionally. Sadly, these steps have made little to no impact, at least not when Mary is in Dick and Jane’s home.

Yesterday, when Jane went up to turn off lights and shut doors, as the girls are back in school and she wanted make sure the dogs couldn’t get into anything (neither Mary nor her sister Sue are known to keep their rooms clean). On the floor, just inside the door was Mary’s journal. Now, many may say that reading a journal is a huge invasion of privacy and I tend to agree. However, in this case, with the lengthy path to help this girl, with all methods seeming to fail and she seems more miserable than ever, a glimpse into her how she is really feeling could be very beneficial.  Let’s just say there was a lot of insight gained, all sad and tragic. And that is where the pain comes into play.

In my previous posts I’ve focused on Jane and how her relationship, or lack their of, with Mary has affected her. This is because I too am a stepmother, I see things more from Jane’s point of view because it is so similar to my own. But today it’s about Dick, the pain he has experienced trying to help his daughter. I honestly can’t imagine how this man felt seeing his daughter’s feelings in black and white. Some of what she wrote, a few with illustrations to accentuate the emotion, were hard for me to read. How can someone so young, so privileged, so loved feel this way about herself, her family and the world around her? This girl is convinced EVERYONE hates her, that is a failure as a human being and yes, she mentioned on more than one occasion that everyone might be better off if she was gone/dead. Luckily, the suicide of a former classmate in the past few weeks made her realize, sadly for the first time in a year, that dying is not what she wants, so that is good sign, but the fact that she has been harboring these feelings, keeping them a secret from her parents and therapist is disturbing. Just last week her therapist suggested that Mary reduce the frequency of her sessions, that she was improving. Nothing in this journal suggests that and its far more likely that Mary has found a way to convince her doctor that she is better off than she is to avoid therapy.

Dick made a point to talk with Mary last night. He did not tell her he knew about the journal, he was hoping to open a dialogue and touch on topics found within the pages without confessing he had read them. She had no interest in talking or addressing the obvious fact that she is clearly unhappy. This morning, Jane checked and Mary had written in her journal last night, clearly annoyed by Dick’s attempts to talk to her and feeling that it was her responsibility to make everyone feel better when they all hate her. The illustration of a “Happy” Mary saying she was tired or not feeling well along with a “Crazy” Mary who knows she is hated and how life would be better for others without her. This is CLEARLY not a girl who is well-adjusted and “fine”. I feel for Dick, he has tried everything he knows to help, followed through on all the professionals suggestions and yet, the most painful revelation of all is his child is hurting, more than even he realized, and nothing is helping.

I hope this family can gain some peace after all this pain, but my guess is there is more pain to come before it gets better.

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.