Living with Pain

I got called back from Mass Health and they say that I am still covered. It was torment waiting for them to call me back. I have been going crazy trying to get everything gathered together for the twins to go off to college. First one we move in on Saturday and then less than a week later I move the second one in. With all the shopping I have been in extreme pain and my left knee and leg are worse than ever. I feel like every step is going to snap my fibula and get burning pain no matter what.  Upside, if there is one, I have gotten my FMLA paperwork done again. Long backstory on that. I faxed it in and now wait for them to approve my appointments for my viscous injections in my knees to hopefully ease some of the pain and delay the need for total knees or just flat out needing a wheel chair.  I can barely manage the pain anymore, and I am on 2 different pain killers. I don't have the energy to go to work or deal with my life anymore because I am just wiped out. But I stil...

So I had to go through a disability evaluation for my MassHealth and they have determined I am not disabled enough to continue getting MassHealth. I am now without any health insurance. I have placed a request to get a call back so I can see what options are now open to me since I can't enroll in the health insurance at work right now, nor do I want to to be honest, it is the WORST insurance plan and unbelievably expensive. Due to this stress I have had nightmares all night, and woke up with an upset stomach. Got out of bed to find my "good" knee is swollen a bit and giving out a bit as I walk. Yeah. The day is going to be a long one if this continues. I hope to all the gods that I can afford to get insurance through the Health Connector quickly if need be since I need to get my gel injections in my knees and do my follow ups at Dana Farber for my tumor.  I want to cry because the stress is so much today. I don't want to go to work but I know I need to power throu...

Just finally had time to post after an extremely long day, I am having more moments where my knees will just suddenly give out randomly while I walk. I had to have a meeting with my daughter and her mental health support group after work, then go to the store to pick up easy to do quick dinners since we wouldn't be home until after 8. Do that, ran into a colleague, chit chat a few minutes, then home, eat and then end up with hiccups. Let me tell you hiccups with a tumor in the region of your diaphragm is a special kind of pain, one I hope most people never experience. I broke down last night and took a vicodin to help cut through the pain and it did work most of the night, hate taking it because I build tolerances to pain meds very quickly and I want it to still work when I need something stronger. I was pretty foggy still this morning but it is what it is. There are storm fronts rolling through which always makes my knees hurt that much more, so I am going to crawl into bed, tak...

Home after a long day, too tired to cook so we got fast food. The pain of eating has hit. I was hungry and ate too fast, so now I am experiencing pain. Ribs are starting to feel like they are being broken again. I am exhausted and look around and want to clean up and have no energy to do so. I know I need to get laundry done but if I go downstairs to do it, I can't make it back up the basement stairs. I feel horrible for having fast food instead of a real meal, it eats away at me when I do this. I am hoping I can do more since it will only be my oldest and I in a few weeks. Smaller meals and we eat pretty much the same thing. Just hoping he will be more willing to help with the other things that will need to be done around the house when the twins move to their respective colleges. I think one of the meds I am on is causing headaches, noticed that I am having them more frequently. Nearly fell on my arse today when the knee gave out while working the short distance from the fro...

  Well I had to break down and take a Vicodin last night. Thankfully the rib cage no longer feels like some one is trying to snap a couple of my ribs off. The nerve pain is still of course giving me issues, not sure if the Gabapentin is working or not. Doesn't seem like I am getting any more or less nerve pain than I have been dealing with since April.  The left knee seems a little more clicky today. I know real technical term right? The joint is popping more as I use it. Makes me wonder how my day will be trying to walk, when the morning starts like this usually means that the day will be one of instability with the knee.  I do think the new medications I am taking is both helping but also making me more tired and lethargic. This is what people with constant pain deal with, the meds that help manage the pain tend to make functioning more difficult because of the side effects, biggest one usually being mild to moderate sedation. So your choice, no side effects but mor...

Doing even the most basic thing is difficult. Showering, trying to lift and bend my knee, especially my left one, to get out of the shower is a slow process. I am basically popping it in and out of alignment with every step. The mere act of bending it grinds a little more bone. I have bone spurs, technical term is osteophytes, in both knees, medium to large in size. I have no cartilage left so any time walking is basically doing more permanent damage. Once in the shower raising my right arm to wash my hair, or shave my armpits hurts, trying to bend to shave my legs I feel like I am crushing my lung. Once I am done and have to get out of the shower there are days I am huffing and puffing because the muscle where the tumor is decides to spasm and either I am so much pain I can't breathe or it is literally making it difficult for my diaphragm to function properly. Once I get out of the shower, have popped my knee into place and dry off I need to sit down, let all the muscles relax, ca...

Welcome to my blog on living with pain. This is going to be a journal of sorts of daily life when you are in constant pain. Most people think living with pain is living in constant excruciating pain I think. It isn't always excruciating. But constant pain will drain you. Trying to work full time and function after that is nearly impossible. I work at a desk all day, I have a tumor in my upper abdominal muscle, it is called a Desmoid tumor, or Aggressive Fibromatosis. You really need to be treated by a cancer specialists to manage these but it is not considered cancer anymore because it can not spread to other parts of the body. But because these things are made out of Fibroblasts, the body's own basic building block, if you try to remove it surgically they tend to recur and come back worse than the first one. So this is the background of some of my pain. The other source is I have severe osteoarthritis in both knees and have been told they are so bad I should have total knee re...