Living With My PsA Diagnosis
I must admit, I’ve written, rewritten, and deleted this post more times than I can count. I’ve started this first line, played with the title, and debated every single word. Uncertainty has plagued every attempt to actually put my thoughts and feelings into words. This is kind of a strange thing for me, being at a loss for words. But really, how can you know where to start when there really is no good place to start? I guess the best place is as far back as when questions began.
In my late teens/very early 20’s, well over 15 years ago (you do the math…) I suddenly began to feel very tired. Not just run of the mill, overworked tired. More like, can’t get out of bed, can’t keep my eyes open, non-functional kind of tired. I was bounced around a few doctors, wrong diagnoses, and various tests. Finally I ended up with my very first autoimmune diagnosis done by a very astute and quite elderly doctor-autoimmune thyroiditis, also known as Hashimoto’s Thyroiditis.
Fast forward about 5 years to my mid 20’s…Suddenly, I had round after round of eye infections and for about 6 months, struggled to see close up without cheater glasses. Luckily, for the most part once it was all sorted out, there was no permanent damage, the only thing left was another clue in the puzzle.
Low and behold, not quite 2 years ago now, chronic ear infections started. After multiple rounds of various antibiotics, I headed to an ENT. My first ENT performed a hearing test and noted mild/moderate hearing loss in one ear. He offhandedly told me it my hearing loss at that point would not return, and swiftly left the room with me in stunned silence. After seeking a second opinion, several additional hearing tests, and a round of prednisone to confirm later, and it was labeled autoimmune inner ear disease and the hearing loss had progressed to both ears and won’t be returning. To this day, my hearing loss still fluctuates a great deal and I have nearly constant ringing (tinnitus) in both ears. Again, I’ve had to make some adjustments but I have found that I have a deep hidden talent for lip reading. Thank God for small blessings. I try and take it with some humor especially since often what I hear is so far off of what is actually said that it always makes me chuckle.
Now we are up to about a year ago when the morning stiffness and pain started. Every morning I’d wake up and put my feet down to shooting pains on the bottoms of both my feet with every step I took. I found that if I just kept moving, walking, and stretching that after about 30 minutes I’d feel much better. As long as I kept moving throughout the day, I’d feel fine. As soon as I sat down for anything more than 15 minutes, the pain in my feet would start all over again. Because the pain went away throughout the day, it was easy to write off as simply getting “older” or aging or the effects of a very busy life (3 children in 5 years does take its toll on your body). But once the pains started lasting longer and spreading to my hands and wrists I decided it was time to get it checked out.
A visit with my doctor led to a referral to a rheumatologist. After finally finding one I was comfortable with, she took immediate X-rays of my wrists and hands, reviewed x-rays of my feet and knee, did a thorough exam, and suggested that given the joint damage she observed on the X-rays and the progression of the disease that I had Psoriatic Arthritis. She gave me a round of prednisone. If I responded to the prednisone then that would confirm the diagnosis.
Two weeks later, I returned to the doctor and left the office with an official Psoriatic Arthritis diagnosis and several prescriptions to start fighting the progression of damage the disease causes. Suddenly, all the pieces of the puzzle started to fall into place…thyroid, eyes, ears…they are all part of this disease.
- What is PsA?
I kind of find it difficult that this disease has “arthritis” in its name. Usually when people hear arthritis, they think of hunched over little old ladies. The first response I tend to get is, “Oh, you are too young for arthritis.” I know this is well meaning but is actually very misguided. The arthritis that older people usually have is called osteoarthritis which is TOTALLY different. That type of arthritis in usually due to the natural aging of joints. Psoriatic Arthritis is actually an autoimmune disease in which your own body’s immune system attacks and destroys the joints in your body. In addition, sometimes tendons, ligaments, muscles, and even your organs can be affected as well. Any joint, tendon, or ligament in your whole body is fair game. It usually starts in the small joints of the body like finger and toe joints. Once a joint is damaged, it is permanent. There is no way to reverse the damage that has been done. It is the damaged joints that hurt so bad. You never really know what odd pain or ache you might wake up with each morning. That is one of the hardest things I have found about this disease. Any odd ache or pain could signal trouble and further damage to your body. In addition to pain, there is also a great deal of fatigue. Because your body believes it is fighting a disease it is constantly in overdrive to “fight” which quickly depletes any stores of energy you might have. Between the pain and fatigue going about a “normal” day can feel nearly impossible. There is no cure for PsA.
- How is PsA treated?
Usually the first line of defense against PsA is a medicine called methotrexate. Methotrexate is a chemotherapy drug (given at a much lower dose than used to fight cancer) whose job is to fight your body’s immune system. The side effects vary in everyone, but nausea, more fatigue, and some hair loss is common. This is what I was prescribed and I’m hoping for the best. One of the complications of this medicine is that it also lowers your immune system so you have to be really careful about being around people who are sick. This medicine is taken either in pill form or injections.
Another newer line of medicine is biologics. These are the medicines that you see in the Phil Mickelson commercials. That is another thing I often get told, “Oh, Phil Mickelson has it, he looks great!” These are also injections and used when your body doesn’t respond to methotrexate. Biologics are extremely expensive, even with insurance, easily into the thousands of dollars a dose. Luckily, many of the pharmaceutical companies have patient assistance programs to offset some of these staggering costs.
- What is the prognosis?
This is what I struggle with the most. There is a great deal about this disease that is unknown. A person can live with it and manage it successfully for years. Another person can spend years trying to find the right mix of medicines to stop the progression of damage. There really is no way of knowing exactly how it is going to go. But one thing is for sure, there is no cure and it is a lifelong disease.
So what does life look like now?
I still wake up every morning feeling stiff, achy, and in quite a bit of pain. Two things make me get out of bed each day.
1. My family- My husband and kids mean everything in the world to me. The thought of being less than the best wife and mother I can be is absolutely unacceptable. I will do everything in my power, and I pray daily for the strength keep the effects of this disease from touching them. I am determined to always give my family the best I have and hope that they never know anything different than the energetic and fun-loving mom I always try to be. They deserve the best.
2. Drive- I know that if I can just get up and get moving, I will feel much better. It is this knowledge that helps me put my feet down and feel those first shooting pangs of pain. If I just keep going, get up, walk, and stretch the pain will ease to much more manageable levels.
Sometimes, because of the pain and muscle weakness, it is difficult to do simple tasks with my hands. Holding a cup of coffee, unscrewing lids, and cutting my children’s food can leave my hands feeling weak and strained. Being on my feet too much causes them to swell and makes it painful and difficult to walk. Several of my finger joints are permanetly inflamed , swollen, and twisted. Most of these things are difficult for me to talk about since I am not usually one to mention if I’m in pain. But in writing about it, I hope to raise awareness for this disease and maybe help others who may be suffering as well. PsA can be very lonely because the pain and the toll it takes daily is so hard to describe and even more difficult for others to understand. If often avoid even saying anything at all to others because what can they do? Sympathy just makes me feel awkward and pity is even worse.
For those of you living with this disease too, here are the medicines I am currently taking to attempt to stop its progression.
- Prednisone X3 a day with tapering dosages
- Methotrexate X5 once a week (Fridays)
- Rx Folic Acid X1 daily- to counter some of the side effects of the methotrexate
- Meloxicam as needed for pain and inflammation
Finally, this post would not be complete without a giant hug for my friends and family. My wonderful husband and parents never once said that I was totally nutters (at least not to my face 🙂 ) when I complained about my random aches and pains. They have been so supportive and caring in the year preceding this diagnosis as I searched for answers and in the short time I’ve had to process it so far. I am very blessed to have the support system that I have and know that not nearly enough people with this disease (or any chronic disease for that matter) have the kind of support that I have. My husband has done everything in his power to help me and understand what I am going through when he could have easily dismissed my aches and pains as all in my head. I will be eternally grateful for him and all my family.
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Thanks for stopping by and as always, don’t forget to Smile and make every day a Sunday.