One thing I haven’t shared really yet with you all is that I was dealt a big blow earlier in July. I have mentioned in the past that I have severe joint pain. This pain affects every joint in my body, from my toes to my neck and everything in between. It is horrible. I saw a rheumatologist back in November of last year and he did a lot of tests only to conclude that he had no idea what was wrong. I feel he blew me off with a diagnosis of “systemic tendinitis”, something he says he has only seen once before in his time as a physician. I walked away from the whole experience with a prescription that I could only take a few times a week and a lot of unanswered questions. I was told it won’t go away and it hasn’t.
In July I went to see my primary physician and was talking about things that are going on in my life. She asked about the pain (I saw her prior to the rheumatologist for the same issue) and I told her that it has only gotten worse. Not a day goes by that I am not in severe pain, sometimes to the point of not being able to move the joints at all. Sitting, standing, laying down… all are difficult and sometimes impossible. My essential oils help at times, but not always and my pain is always lingering. She started asking some questions about my skin and I answered, all the while wondering what she was getting at. She looked at my skin, nails, and scalp and sat down. Then it came.
She felt that I had psoriatic arthritis (PsA). She decided to run some tests and see what to do from there. Those tests turned up to not show anything significant but, as it turns out, they didn’t have to. The diagnosis of psoriatic arthritis is sometimes one given through elimination. I had been excluded from a number of other illnesses (lupus, rheumatoid arthritis, and others). I fit every other criteria for PsA and she was confident that it is what has been causing me so much pain. She started me on a low dose of a chemotherapy drug that takes about 8 weeks to work. She is starting my treatment at the recommendation of my rheumatologist who can’t get me in to see him until October. They both wanted to try to take care of some of this pain until I can see him.
So, tonight I take the dose for week 6. I take 4 pills at a time and it is supposed to shut down my immune system that is fighting my body causing all this joint pain (in very lay terms). What this med does to me is awful really. Every Monday I feel like death, although it is getting better it seems. I have not had a decrease in pain at all. In fact, I am starting to think the pain is getting worse. But, I have no primary doctor now (she moved) and my rheumatologist has no immediate openings. So I continue to take the medicine and pray that it is helping. I technically have a few more weeks before I will notice a difference. It is possible that I will have a dose increase or they will change the medicine entirely but nothing will happen until October. I am trying to remain optimistic.
My friend asked me why I take the medicine when it makes me so sick. Well, here’s why. The psoriasis is not horrible right now because I have been out in the sun a lot but come winter, it will be. The medicine should help control that. My joints are already showing signs of damage. I could have disfigured joints and that is not something I want to consider at my age. I also have hope that the pain will go away. I need it to go away. At this point, I am not sure if I will ever be able to work a normal job again. I can’t be around sick people because my immune system is nonexistent. I can’t stand, sit, walk, etc. for any long periods of time. I need to have the hope that I can get my life back, that I can be the kind of mom my kids deserve. I want to not have “sick days” every Monday but I have to believe that this will get easier and I will get better.
Pain has robbed me of so much. At this moment, I have pain in my fingers, left wrist, neck, both shoulders, both hips, back, right knee, right ankle, and both knees. That is not living. That is existing. I want to LIVE! I hope you stick with me on this journey of trying to get my life back.