Saturday, March 14, 2009

scars, pain and understanding

I had an interesting conversation with a friend, B, tonight. Without sharing too many of her personal details, she's in the middle of seeking a diagnosis for abdominal pain, originally related to ovarian cysts and now possibly an infection.

I've been friends with B since college, though we haven't necessarily been close. Last year, during a trip back east, I opened up to her some about my daily struggles. She had no idea I had continual head pain and live such a regimented life. At the time, I was still very sick - my head pain was never below a 4/10 and my Migraines turned severe (7+) several times a week. Add the melange of daily symptoms, and I was in very sad shape.

B remembered that conversation from last year, so she sought me out tonight to share her story and her struggles. It was very touching and heart-wrenching at the same time. It seems that much of her trouble is at least partially due to being brushed off by her doctors (a familiar story to many of us).

Probably the most amazing part of the conversation is how many of her words mirrored my very same feelings from last year. She's dealing with a lot of anger right now, reminding me of my own anger I'm finally letting go of. I remember how overwhelming the anger would be sometimes, borne out of an inescapable frustration with my debilitating pain. I was angry with everyone around me, especially those without chronic pain who couldn't possibly understand what I was going through. Mostly I was angry that there was no "fix" for my chronic pain, and I could only hope to manage it for the rest of my life.

It's only in the last few months that things have begun to turn around. My treatment regimen, coupled with a lot less stress, is finally working. Getting rid of three major stressors in my life (found a part-time job, finished moving to our new apartment and sold my car) has significantly improved my health. I'm still not where I want to be, but I'm much closer than I was last fall.

I couldn't really give B any answers, but I could offer her some hope and support. I pointed her toward a number of resources on the web. I shared some more of my story that I hadn't told her before. But, most importantly, I offered her compassion and understanding, something I've found in abundance here in the online chronic illness community.

My talk with B was a strong reminder that at any time, any one of us can cross from the world of the healthy into that of the sick. But it's also a reminder that we can manage to find our way back among the healthy, even if we bear the scars of the journey.


Side note: if any of you have suggestions for resources for female reproductive disorders and related pain, please leave them here in the comments so I can pass them along to B.


Be well,
MJ

6 comments:

Leslie said...

MJ,

This post really touched me, as I can relate to both you and your friend. I hope that B is able to get the care she needs, as I know what it's like to not be taken seriously by doctors. B is lucky to have a friend like you to support her through what is undoubtedly a difficult time in her life.

Leslie

Jeanne said...

MaxJerz,

Since I personally have numerous illnesses that would be classified as female reproductive conditions, please feel free to refer her to my blog!

Obviously I'm not a medical professional and can't diagnose her but I would not be at all surprised if I can steer her in the right direction to get the help she needs.

I don't know if she has ever had a laparoscopy but it's possible that this would help her get a proper diagnosis, depending on what's going on. (I'm totally guessing based on the basic sketch you gave).

For example, laparoscopy is THE definitive means of diagnosing endometriosis. I've had endo for 27 of my 40 years.

Clearly if she thinks she has an infection she needs medical attention ASAP.

If there is any chance she has endometriosis that is yet-to-be-diagnosed, it's crucial that she find a doctor experienced with and highly skilled at treating endo... part of that means she would need to locate a great surgeon since laparoscopic surgery is the means of diagnosing endo.

Having a lap by an inexperienced doctor can mean having extra surgeries later to remove what was missed... or even the tissue being spread during surgery.

Being brushed off by doctors can happen with many illnesses but is CLASSIC for endometriosis patients to encounter.

Again, I certainly can't diagnose her. I'm just saying that this is very, very common with endo.

Pelvic pain can be caused by interstitial cystitis (which I also have). It can be caused by pelvic conegestion syndrome (have that too). The list goes on because I have many conditions that have overlapping symptoms or are related in some way to each other.

Please send your friend my way. I may be able to help her figure out where to focus her energy, how to go about finding the right doctor, etc.

Please tell her not to worry about "labels". In other words, don't let her feel funny commenting on my blog when she doesn't have a diagnosis yet. Lots of people comment on my blog as they search for the answers to their health issues.

She should get medical attention ASAP, though, if she has reason to believe she has an infection.

Hope this helps!

Jeanne

MaxJerz said...

Leslie and Jeanne, thanks for your comments!

Jeanne, B is indeed scheduled for a laparoscopy next week. She's finally getting the medical attention she needs after an ER visit a couple of weeks ago. Her previous doctor dismissed her frequent calls about continual pain and other symptoms, saying it was "normal" for ovarian cysts; she's finding out now that there's more going on than cysts. She'll know more after next week. I will direct her to your blog - thanks so much for your comments. I'm going to forward them along to her as well.

Be well,
MJ

Jeanne said...

MJ,

I know next week will be here before you know it but there's much to learn about going into a lap. For example, I have an entire post about laparoscopies that I posted recently that could be very helpful for her. I hope she'll check out my blog. I have had 6 laparoscopies and 1 laparotomy (major surgery/large incision). I would urge her to take a peek at my blog. It might help her feel more prepared going into her surgery!

Jeanne

Alexandra Carmichael said...

Would CureTogether be a source of helpful information and resources for your friend? Please let me know if I can help.

Alexandra

Jeanne said...

MJ,

How is your friend doing post-laparoscopy?

Jeanne