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[personal profile] marydell

 Via [profile] shweta_narayan , and actually a bit too late for Invisible Illness week, but I'll go ahead and post anyway.  I actually have more than one invisible illness (food allergies, asthma, endometriosis) but I'm just filling this out for the endo, since that info may be useful and since it's had the largest effect on my life, because it is the cause of my infertility.

 30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Endometriosis. This is a condition in which endometrial tissue builds up outside of the uterus. During periods it sheds just like regular tissue, but has nowhere to go so continues to implant in the abdomen. In addition to extreme pain during menstruation, it can cause infertility (because of blocking tubes, among other issues), fatigue, hormone imbalances (because the implants create aromatase), and autoimmune problems (because of the immune system trying to break down this tissue).  I have experienced all of those problems.  It gets worse as time goes on.  Treatments include laproscopic surgery to zap the implants (works well, apparently, but doesn't stop them from coming back), having a baby as early as possible to reset the whole system, surgical menopause (i.e. hysterectomy), birth control hormones of various sorts, hormonally-induced menopause (lupron), and various pain-management protocols (which don't do anything about the underlying issue).

2. I was diagnosed with it in the year:  Diagnosed with "probable endometriosis" around...1998 I guess.  Formal diagnosis requires surgery which I didn't want to do, since I'm eligible for whatever treatment I want with just the "probable" diagnosis.

3. But I had symptoms since: my first period, age 13. 

4. The biggest adjustment I’ve had to make is:  Not having babies.

5. Most people assume:  that my cramps are no worse than their or their female friends' cramps.

6. The hardest part about mornings are: Mornings aren't bad, now that I'm on various treatments.  When I was still cycling, Mornings when I had my period were ok as long as I'd gotten up every 4 hours during the night to take pain medicine.  Otherwise there could be an hour or so of very bad pain while waiting for the drugs to kick in.

7. My favorite medical TV show is:  Mystery diagnosis

8. A gadget I couldn’t live without is:
I love many gadgets, but none of them help with cramps or endo.  I am one of those people whose cramps are made worse by heat, alas, so no heating pad for me.

9. The hardest part about nights are:
Nights aren't bad either, now that I'm on treatment. And when I was still cycling, they were ok because sleeping & lying down helped with the pain.

10. Each day I take __ pills & vitamins. (No comments, please) Let's see - zantac, singulair, benadryl or zyrtec depending on circumstances, usually also 2 small vitamin c pills and an acidophilus tablet.  All of that is because of my allergies, but I'm including them here because the treatment I'm on for endo makes my allergies worse.  Every 3 months I get a depo-provera shot for the endo, which has helped tremendously.  Because of this shot's tendency to nibble on one's bones I need to be taking calcium and vitamin d daily, but I haven't started--I can't swallow multivitamins or any very large pills reliably because esophageal problems (food-allergy-related), so I need to get some small ones of these soon, before I start losing bone density.   Before the depo-provera I would take 12-14 advil in a day during my period, as well as a flexiril or half a flexiril.  I've also tried vicodin which didn't help the pain much but made me not mind it particularly.  Depo-provera is better, for me anyway, even with the increase in allergic problems.
11. Regarding alternative treatments I:  Nah. I think a lot of alternative treatments for menstrual cramps may work--I thought for a bit about trying accupuncture--but they seem geared to more normal-type cramps, and they don't stop the build-up of endometrial tissue.  Endometriosis is a progressive disease, so just addressing the pain isn't enough, IMHO.

12. If I had to choose between an invisible illness or visible I would choose:  I wouldn't choose either, but if I had a choice to make, visibility wouldn't enter into it.  Not-very-relevant note:  like a lot of illnesses, it's not 100% invisible.  The fatigue contributes to my high body weight; the treatment I'm on gives me zits, and so forth.  Nobody could diagnose me by looking at me, but I can see the effects.
 

13. Regarding working and career:  I have an excellent career, but in the past couple of years I've had to make use of FMLA to make sure my job was protected when I missed work above and beyond my alloted time off. Companies of a certain size have to give you unpaid time for chronic recurring illness, if you document everything properly and get approval.  Part of why I decided to go on depo-provera is that there is a large project going on at work, and in this economy I'd rather not be the person who keeps missing work because of female trouble. But also parenting a toddler is work, and the endo was interfering.

14. People would be surprised to know: That despite being crazily in love with my son, I am still filled with grief about the other children I tried to have, and filled with rage and angst about being unable to just add to my family when I feel like it.

15. The hardest thing to accept about my new reality has been:  Living my whole teen and adult life with the deeply ingrained notion that being female is a source of ever-increasing pain, and that my body hates itself. 

16. Something I never thought I could do with my illness that I did was:  succeed in a demanding career

17. The commercials about my illness: There are no commercials for endo, except vague references to cramps in the YAZ commercials.  

18. Something I really miss doing since I was diagnosed is:  Nothing.  Getting diagnosed has, for all of my illnesses, been a godsend because it's the doorway to treatment.  The diagnosis doesn't take anything away from me that wasn't already gone.

19. It was really hard to have to give up:  Trying to get pregnant. In order to treat the endo, I have to be on a contraceptive. After 4 years of trying it was clear it wasn't going to work, but it was hard to totally let go of that. 

20. A new hobby I have taken up since my diagnosis is:  Adopting babies :)

21. If I could have one day of feeling normal again I would:  I have never felt normal.  If anything, the way I feel now, having  no periods at all, is abnormal, and I would totally hate to go back to what was normal for me.

22. My illness has taught me:  That illness sucks?  That natural living is not good living, for me, and that accepting a certail level of medical maintenance is what allows me to feel good and live relatively care-free. Sadly, also, that preserving fertility and improving quality of life are sometimes at odds.

23. Want to know a secret? One thing people say that gets under my skin is: Oh, yeah, I had a really hard time getting pregnant, too, it took, like, months. [My sympathies are totally with anyone who isn't pregnant YET, but when someone already has a baby, they do not get to commisserate with my total lifelong infertility, goddamnit]

24. But I love it when people:  Tell me about the cool drugs they take for their conditions.

25. My favorite motto, scripture, quote that gets me through tough times is:  " http://www.youtube.com/watch?v=ch-RcZ3bLh0" - That's Life, the Sinatra version.

26. When someone is diagnosed I’d like to tell them:  Get on some kind of treatment right away - don't let it keep progressing, because the longer you ignore it, the more it will take away your choices.  Of course, typically people have this for years and don't get diagnosed until it's well advanced; really what I'd say to someone who just thought they might have it is to discuss it with your doc and see what they say.

27. Something that has surprised me about living with an illness is: That ignoring it really doesn't make it go away.  The cyclical nature of Endo and the brain's way of forgetting pain makes it easy to think it's ok for 3 weeks, and then it hits you again.

28. The nicest thing someone did for me when I wasn’t feeling well was:  I can't count the number of nice things my husband has done in 13 years of living with me. He is a nurturing soul.

29. I’m involved with Invisible Illness Week because:  my friends are being brave and telling their secrets, so I think I should do the same, in case it helps someone.

30. The fact that you read this list makes me feel:  embarrassed. One of the hardest things about living with & talking about my illness is that it involves menstruation, which I have deeply ingrained shame about, as with all things female and physical.

 Thank you for reading this. Feel free to ask about anything I haven't covered.

 


Date: 2009-09-20 05:38 pm (UTC)
From: [identity profile] slrose.livejournal.com
They make a chewable calcium supplement -- my mother was using that before she started having problems with her teeth.

Date: 2009-09-20 05:57 pm (UTC)
From: [identity profile] etumukutenyak.livejournal.com
Endometriosis also occurs in female primates, and I've just diagnosed it in one of my patients (pain associated with menses, confirmed by surgery). Right now, she does well with the injectable form of an ibuprofen relative, but real treatment for her means an ovariectomy or else Depo-Provera.

Re: 7 -- I love "Mystery Diagnosis". It's like a pop quiz/ continuing education seminar. :-)

Date: 2009-09-20 08:16 pm (UTC)
From: [identity profile] marydell.livejournal.com
Ooo, interesting. Poor gal. Does ovariectomy correct it in every case? It apparently doesn't always, in humans, because the damn implants make their own hormones so sometimes the processes continue to run in the background, as it were. That and my fondness for my heart and its health are why I opted to keep my lady parts and take depo-provera instead. For now, anyway.

Date: 2009-09-20 09:03 pm (UTC)
From: [identity profile] etumukutenyak.livejournal.com
Good question -- in my experience, it does a better job in our cousins than for us. Her cardiovascular health is also less affected by menopause, so it's less of a risk in her case ( and a tough decision for us primates). In her case, the ex-utero implants are fairly small, and she's only recently started having problems, so if we can do the surgery, I think she'll do well.

Date: 2009-09-20 07:31 pm (UTC)
From: [identity profile] fledgist.livejournal.com
In a word: yikes! It sounds like one hell of a lot of no fun (not just the pain and discomfort, but the incomprehension from other women).

Ginger: don't you mean other female primates?

Date: 2009-09-20 10:29 pm (UTC)
From: [identity profile] pnkrokhockeymom.livejournal.com
Thank you for posting this.

I was diagnosed with endo after a laproscopy in 199....um...6. I did the first of 2 lupron shots. It nearly killed me--lupron and asthma, in me, do not get along. So we skipped the second shot. Puppy was 2 when I was diagnosed. But the first shot seemed to do the trick, as my symptoms improved and I haven't had a lot of trouble since.

Edited to correct funny typos.
Edited Date: 2009-09-20 10:30 pm (UTC)

Date: 2009-09-21 05:47 pm (UTC)
From: [identity profile] redrose3125.livejournal.com
The thing that annoys me the most about endometriosis is that the common line is that it does not affect women under 30. I have 2 other friends who had it, both under 30!

Date: 2009-09-21 06:10 pm (UTC)
From: [identity profile] marydell.livejournal.com
Yeah, that's total BS, I suspect. Women under 30 don't tend to be as worried about fertility, I suppose, so may not seek help for it in their 20s. Also it's hard to know what amount of pain is abnormal until you've collected a fair amount of comparative anecdata.

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