Ouch

 

I have an appointment with my pain doctor this morning. After that, I have my infusion therapy. Ever since the awareness of opioid addiction swept the medical field, it has been very difficult to get pain medications for non addicts experiencing real pain. Ugh! The refrain I hear from my rheumatologist and other doctors is "I am not a pain doctor. See a pain doctor" whenever I ask for pain medication. Even for Tylenol with codeine. Even in the emergency room upon discharge. You go from dilaudid and morphine in the hospital to, if you are lucky, six tramadol upon discharge. When the condition has not been resolved!

I have severe pain in so many joints and throughout my GI tract (RA can affect organ systems too) that I have difficulty walking, holding a mug of coffee in morning, sleeping, eating and just being able to work a half day or shop for groceries. Not to even mention laundry or cleaning. Constant pain is awful and leads to depression and hopelessness. It is very isolating because you cannot participate in life with others. I cannot work now. 

My latest new pain came with a right shoulder rotator cuff tear from lifting a full carton of almond milk from my top shelf in refrigerator. YES!! I tore my rotator from lifting a carton of milk. RA is wreaking havoc on my shoulders and the whole joints are affected and predisposed to rotator cuff injury. Now, I cannot lift or use my right arm. Cannot carry any weight while lifting arm outward and do not have full range of motion. My insurance denied the necessary treatment.  So I am just left with a gimpy arm. My other shoulder had three partial rotator cuff tears and and I had to shell out-of-pocket $1200 for two PRP injections (which greatly helped) and had cortisone. It still hurts but is way better. Now my right shoulder. But no pain medication. Just heat and cold, rest and Tylenol. It throbs with stabbing pain all day. My fingers are numb. This new pain is added to my  daily pain in spine, neck, knee, hands. So I am eager to see my pain doctor today. 

Dr K, my pain guy, specializes in spines. I have gotten relief from terrible cervical nerve pain with two epidurals and we will address lower back nerve pain upon insurance authorization. Since I had to be taken off my DMARD methotrexate due to risk of intestinal perforation (I was SO sick for 6 weeks) , my RA flares have fully blossomed. I am now starting on biologic Enbrel. But the affordability of that medicine is a problem. With assistance and insurance, my co-pay is over $1800 a month for four injections! See separate posts about US laws that let pharmaceuticals patent life saving medications, resulting in diabetics and other illness patients not able to afford their life saving medication!!

When I see my pain doctor, I have to be drug tested each visit to ensure I am not overusing or doing drug no-nos. You are treated like an addict. The medical mantra is that pain management does not take away all your pain but rather the aim is to "help". They do not even aim to take it away. They will not prescribe potent painkillers ongoing. Each month I try to get  12-21 Tylenol with codeine. It is not enough at all but I dole them out with care and try to make it last for that month. It is like squeezing blood from a rock, lol. Frankly, I am at the point in my life that I do not even care if I become a functional pain med addict as long as I can resume some basic life activities. Really. But no, they won't let you. So, I am off to see Dr K and do our dance. I appreciate him and need him. 

I hate posting downers and complaining posts. But I need support and want to hear from or reach other chronic pain sufferers and our/my supporters. I know that most people are ignorant about chronic illnesses and RA in particular and we are invisible sufferers. So much change needs to happen for healthcare accessibility. Capitalist profits-over-people business model has hijacked the insurance, pharmaceutical and hospital systems. Good doctors cannot provide the care they know their patients need. 

I publicize my predicament to put a face to this political travesty. It is not a sexy issue like war and climate change, but it affects such a huge swath of people across the country and we are literally dying from greed. I urge activists to take on healthcare accessibility issues and I urge friends and loved ones to not turn a blind eye to the needs and predicament of their friends and comrades.