GROUP 2B - 9,220 / 9,220 (100%) users invited back [last: ] Discuss
I took my third shots of Enbrel and methotrexate this weekend after the two week hiatus. Before I really didn’t think these meds were doing anything for me, I still felt in pain and achey BUT… it’s funny how your brain adjusts to where you are and how quickly you forget how bad the BAD days actually are. After being in horrendous pain and swelling from not being on the meds and then starting them back I see how much of a difference they really were making. I can type without instant pain – I might get sore after awhile but I can type without it being ouchy, something I didn’t have last week or the week before. Chopping hard veggies still is a strain but not impossible, I can hold cups with confidence that they won’t fall out of my hand, I can hold my phone to my ear and talk without my hand cramping. Those “little” things make it s o much easier to pay attention to life when you are not dealing with endless, soul sucking pain and reduced agility.
I am writing this so I remember. Next time I gripe about hair falling out or sun burning me too quickly or a little sore joint – I need to remember that it can be/has been a lot worse and could be even worse than that. I am lucky right now to be able to see a doctor who is working with me, lucky to have insurance which covers the obscenely expensive medications that I would not even try had I not had the insurance. Incredibly lucky to be salaried and have a kind employer during this period of frequent absences – either to see doctors, or for medical emergencies, or being sick because the meds made me vulnerable to more illness, death of my father. All of that in a short time would cause me to lose my job at some places I have worked – plus being paid for time off that you didn’t choose or want to take off is an incredible thing, eases my mind and makes it so I CAN go to the doctor instead of worrying that we won’t have money for groceries because I’ll be missing the hours from my paycheck.
Then I think of all of the people who have this disease or other high-maintenance diseases – those without a support system, no insurance, or maybe insurance with ridiculous deductible, insurance that denies access to meds because they want you to try something cheaper for a few months (while you suffer) before they let you have a shot at a very promising treatment that will keep you physically well enough to work. Those who want to work but no longer can because they didn’t get treatment when they needed it (to prevent disability, deformity and loss of function one must be treated early and aggressively). I somehow managed to be in the right place at the right time, my coverage could be lost at any time if the laws are changed. My pre-existing conditions make any insurance under the prior way impossible to obtain. I have already seen how quickly I can go to loss of dexterity and ability, how painful I get, the only reason I limped through those days was the aid of painkillers – if I had to stay that way for months then permanent damage occurs – that scares me! All of those who have no choice but to face down this disease or others like it with no aid are brave for pushing forward.