Pain has shaped Pam’s life for decades, both physical and mental. Others’ pain, too. She has served as a caregiver for multiple family members and in more recent years, after being diagnosed with rheumatoid arthritis and other conditions, shifted focus to her own well-being. And from that, developed an approach to chronic pain that’s worked for her.
Here Pam shares some of the experiences, everyday agonies, frustrations and little epiphanies that make her who she is today.
Roles as Both Caregiver and Patient
I’m a wife, mother, and grandmother to four quickly growing boys. I spent my early adult years working as a nurse’s aide in nursing homes and the local hospital. After I stopped working as an aide, I took care of my dad, my mother in law, grandmother in law, and a few other relatives, then went on to do home health care. Working with patients in their homes, one on one, was my favorite thing to do!
I’ve been a caregiver almost my entire adult life. So I’m actually [sharing] a patient experience through the eyes of a caregiver! I’ve not been trained to a level beyond nurse’s aide, [but] there is a lot that I understand medically. I just don’t have the degrees.
Finding a Soulmate Through It ALL
I lived a life in fear of my ex for 25 years. I was mentally, emotionally and sexually abused and manipulated. Hence, PTSD now. Then, when I wasn’t looking, there was my Prince Charming right in front of me. He endured 20 years of the same kind of torture from his ex. He truly is my soul mate, no doubt about it! Coming up on 20 years of blissful marriage! There’s a tremendous respect we share toward each other. We know that God has given us both the gift of each other, and that’s the most precious earthly gift I could receive.
My Life Changed on June 18, 2017
My rheumatoid arthritis journey started in June 2017: June 18th I woke up with a headache, and it stayed at a pain level of no less than a 5 for 3 full months! Often shooting to 8 or 10. Then the neck pain….OH the neck pain!
I guess it just worked its way through my body, making me cry out, day and night, with sudden shocking pain somewhere in my body. It [ chronic pain ] comes and goes, sometimes stays for a very long time, sometimes it leaves after an hour or a day.
I have to carry all of my splints, canes, medical gear, and pillows and cushions wherever I go because this thing just loves the element of surprise! And I may or may not need the equipment that I bring along, but the things I left at home! Grrrrrrrrrrrrrr!
Treatment Trial and Error and Living with Chronic Pain
Injections of methotrexate helped for a couple of weeks and then dropped off, even at the highest dose that I could receive. But I thought I was going to hurt someone, I was shaky inside and out! I couldn’t wait to get off of it!
I’ve had Prednisone [and] Celebrex. Celebrex helped the first few days, but then provided no relief. This stuff is expensive, too!
I have had multiple joint surgeries, including both total knees, both rotator cuffs, broken wrist, L4/5 fusion, TMJ and mid-foot fusion. When the pain started, I had X-rays of both my shoulders and left wrist/hand [that found] I need a re-repair of the left rotator cuff, surgeries on the left wrist/thumb/hand and a reverse replacement of the right shoulder. So much of my arthritis pain was in the upper half of my body.
Headaches come and last for weeks or months, neck pain is horrifically impossible to tolerate and keep my sanity from both at the same time. Add the shoulder pains, wrist/hand pains and it’s all unreal.
Then there’s the total frustration I’ve dealt with between the doctor who’s supposed to do the replacement (who claims the neck/shoulder/arm pain is not going to be helped by the replacement), and the sports medicine doctor who says, “Why are you here? You clearly need replacement surgery!” I have totally lost it with both of them, [had] crying fits in their offices, yelled that SOMEONE has GOT to do SOMETHING before I need to be committed to the crazy house! Oh Calgon! Where are you?
We had a number of trial and errors on medications, as well as a few severe reactions, but very few that helped with the pain. I feel like I’ve been in a flare more than not, making this journey very frustrating. And I cry… from the pain and from the frustration. I have felt at the beginning like I wasn’t being heard at my appointments, but when I voiced this concern to my general practitioner (GP), suddenly the doctors began to listen and address my concerns.
It’s a bit like making homemade bread. You mix it (feel pain), knead it (see the doctor), let it rise (try this med or that med), punch it down once (let the doctor know you need something more powerful), let it rise again (try yet another Rx), then shape into loaves and bake. (You don’t know until it’s finished baking if it’s a proper loaf of bread or not.)
Learning, Managing & Loving
It’s been a trying several years, with few positive results, but I’ve learned a great deal about being kind to myself, allowing the tears of disappointment and frustration to fall but not wallowing in it. I allow a little bit of time to grieve the fact that it’s going to take more time to get it right, but [then] I’m back at the fight and looking to a better outcome once we have found the meds that work.
I’m fiercely independent and will try to self-manage, but I also recognize that I’m no longer able to do as before with my hands. I need to rely on my husband. Through observation he has learned how I navigate day to day through multi-symptom times. I don’t need to say anything, and he appears with the ice pack, or offers massage, and he prays over me. We just know what each other needs.
My pain is in many areas, but the hands have been the most painful to deal with. I’ve found different kitchen gadget help for fingers that don’t want to cooperate. I’ve reached the point of not even trying to open jars anymore. You need to humble yourself and ask for help as soon as you need it, before wearing yourself out trying to do it alone. Let someone walk with you through it.
Reading/listening to/watching (usually Christian) movies and books always encourages me. I also do lots of cooking and baking (one of my top passions). Most days I need an afternoon nap in order to get to the end of the night.
Physical therapy helps. If you feel you need it, speak up to your doctor. Many times in even these last few years, I’ve felt like I needed PT, so I mention it to my GP or rheumatologist and they’ll usually get me set up for it.
[After learning I was living with RA], I felt off-kilter, as if stepping on free-floating patches of ice atop the deep sea. I was confused by it, and it robbed me initially of any confidence I had in my overall abilities. I began to believe that this was just going to be my life… My mantra was “Poor me, I’m a victim of pain.”
When I realized that my attitude had to change, I took control of my thoughts. Then I began to observe the pain and understand a little about my afflictions. As strange as it sounds, I found that embracing the pain, putting it under a scope and really evaluating and acknowledging it, made it disappear seemingly quicker than before. So, I’d like to inspire more confidence in people and give hope for days that are actually painLESS by embracing it.
It never gets boring, that’s for sure! I have to monitor how I’m doing on a minute to minute basis, because this pain loves to surprise you!
Pam D.
Trempealeau, WI
Lives with rheumatoid arthritis, psoriatic arthritis, Behcet’s disease, post-traumatic stress disorder, osteoporosis, mild dementia
Has pain shaped your life? If so, we invite you to share your experience with the community.
