Posted in Fibromyaloga, rheumatoid arthritis

I am hurting

The last couple of days have been grueling for me dealing with a suicidal toddler in addition to pain that has hit new realms. My wrists, my hand and fingers, knees, ankles and feet are very swollen and it is not the usual pain, it is new and it is more like a feeling that I am being poked with needles in addition to the pain of swelling. I also get sharp pains and prangs in my sides, my ribcage, and chest (mostly my left side – starting from my shoulder down to my lower back) so it is muscle pain.

For the longest time, I believed that with medication my pain would not get worse, but a part of me was living in denial and understood that the pain would in fact get much worse. When I was first diagnosed, that was the most important question I had. Would things get worse? Unfortunately, as far as the medical community is concerned, that question is one they beat around the bush about. I knew the answers given to me were not accurate so I asked those who lived with the condition for quite some time. I was told yes, it would get worse. Would you believe I spent a lot of time researching this question and I never found the answer until I asked sufferers? Those words gave me a better understanding of what I should prepare myself for so as much as I am feeling down about the increase of pain, I was already prepared. Not finding answers within the medical community is an area that leaves sufferers struggling to make sense of everything on their own and I think that this is very unfortunate but reminds me how important advocating for myself is.

For the last two years, I had specific kind of pain that I learned to work with, and now, it is time to do some reassessing of my condition. I have also spent a lot of time educating myself and preparing for the worst should it come to that. I have to remind myself that even though my diagnoses happened a couple years ago, I was in pain for the ten years prior so my conditions are more far along than I would like them to be. However, I always keep my expectations high and I continue to plan for the future whatever it may hold. For one, I am halfway through completing my master’s degree. I only went back to college in 2000 when I was 24 and I started small with my associates in legal studies and now, my goal is a master’s in legal studies. Do I think my conditions limit and hinder my success? Of course, they do, but living with chronic pain every day of your life is bigger challenge than working a fulltime job, going to school part-time, playing an advocacy role and being a parent. The pain is an enemy that I fight everyday but the rest is what keeps me fighting.

 Last night, I lied awake in bed staring at the ceiling and wondering how much more life could throw at me. It seems like I am always running in multiple directions and I don’t rest until my head hits the pillow. Most days, I don’t realize how bad I am hurting until I stop and rest. It makes me sad sometimes, but I understand how much my attitude reflects upon my own life and the lives of those I love. If anything, my attitude gives me strength when I feel like I am at the end of my rope.

6 thoughts on “I am hurting

  1. BIG HUGS! You are so right about the medical community pushing aside our questions about pain levels, and the worsening of our condition. I'm a no BS type of person, and would prefer them to have said, "Ok, you have RA. This is what you can expect, worse case", then listed off the effects.I know there is a lot unknown about RA, but they could at least offer us the info they have, so we get some idea of what may lay ahead!Which is why I say, again, your blog puts out some much needed information for people who have RA. I've learned things from you that my doctors didn't tell me about. Keep blogging.

  2. I hope you start to feel better soon. I know how hard it is to raise little ones with RA (and fibro). I have been awake staring at the ceiling lately too! I even speak out loud "I hurt" – sometimes the hubby hears me. He knows though. Do you feel like the tin man in Wizard of Oz softly whispering "oil can" – lol…cuz that is how I feel too..Hugs and prayers coming your way!

  3. I'm so sorry you're hurting so much, Lana. I do hope this latest flare of RA and fibro will soon ease for you; I know you're doing all you can toward that end. You've had some rough days and nights lately; it's no surprise, considering how stress can trigger and worsen symptoms, that you're in pain now. Sending calm and mental quiet through the ether in your direction …-Wren

  4. Dee, Thanks. I do think that honesty works better for patients than reading off medical lingo and medical analyses. I keep reading about RA being asymmetrical and our doctors insisting it and most RA’ers know that is not necessarily true. Experience is the only response we can go by.Raw Sierra, Thank you for well wishes and prayers. Yes, I know what you mean about the tin man. It seems like the realization comes to me when I finally lie down and try to rest the day off. Wren, as always, thank you. I am sure stress plays a major role in how we feel but it also shows progression in our conditions. In the end, that can be expected so I just keep moving…that is really all can do.

  5. Lana…I'm so sorry for your pain:( I just feel that nobody knows what we go through except fellow RAers. Years ago when I worked for physiatrist (thats physical medicine and rehab doc) not to be confused with psychiatrist hehe…we saw patients with chronic pain. I was in my 20s and while I knew I didn't have the energy other 20-somethings had…at that point I did not have RA or any of the fibro-type symptoms….I could sympathize with the patients we had but I could not emphathize. I now have empathy like I didn't before. It does take walking in someone's shoes to understand. I understand what you are going through and my heart aches for you. You have probably done this or heard of it but someone told me to use Epsom salt baths. Have you tried this? They said it helps with inflammation and pain. Take care..

  6. Ohhhhhhhh, man I'm so sorry you have to deal with this on such horrible levels! The needles and pin pricks in the joints sounds like my level of pain. I see my rheumy next Mon finally!!! I hope for some answers! Love your blog!!!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s