marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Default)
1. I've had reflux for at least a decade, and sometimes I can make it go away by religious adherence to both allergy-diet and reflux-diet, but I am not inherently religious, and I just really have to have caffeine and albuterol, both of which relax the esophagus. So reflux is a fact of my life, and sometimes it's really really bad and gives me bad asthma to boot. (Just like Charlie, which is what helped me to guess what was happening with him) I've never switched off of Zantac onto a PPI like Prilosec despite my reflux-having brother telling me how awesome Prilosec is, because I literally can't go a day without Zantac. Thanks to the reading I've been doing about Charlie's prevacid and general approaches to GERD for toddlers, however, I've discovered that a lot of people take both a PPI and Zantac, just at opposite ends of the day.

So, during a bad bout last week I decided to steal one of Charlie's prevacids just to see. And OMG. Reflux totally went away for 24 hours. I promptly went out and got the OTC version--same strength, just in capsule form instead of meltaway form--and have been on it for about 4 days, and seriously? I didn't know I was capable of feeling this good. The only oddities so far are that I don't seem to get a chemical signal telling me I'm getting full, so the difference between "hm, still a little peckish, think I'll have some more" and "BLARGH SO FULL OOF BLARGH" is like 2 bites. The other is that I no longer seem to drink a lake's worth of beverage with every meal, because I'm not having a hard time swallowing food, apparently. So now I get to discover if I have some sort of brain signal that tells me when I'm thirsty. Also I will need to start taking a proper calcium supplement because I'm not eating 6-8 tums a day (it's usually not that bad, but the past couple of weeks were ridic.)

2. I got my very first bone density scan, and my bone density is way in the positive numbers, yay, so I am not currently headed toward osteoporosis or even osteopenia. This means I can stay on (potentially bone-eating) depo-provera, which in turn means I can keep my (jerkface) internal lady parts for the time being, since on DP they continue their slumber and don't bother me with their nonsense. This makes my heart, in the cardiac sense, happy. So hooray all around. My right hip is somewhat denser than my left hip which I blame on Charlie--I always carry him on my left and I think my bones on that side are being cowed into submission by his heaviness (43 pounds now). To think I used to play "Bonecracker" on the ipod for him when he was a wee 20-something pounds.

3. After going in the sun I got some small discolored patches on my arms, conveniently the day before going to the doctor for other stuff, so I showed them to her and she said they're caused by sun+yeast. Apparently my arms have been eating cupcakes and taking antibiotics while I wasn't looking. The treatment is to wash my arms with Selsun Blue dandruff shampoo (b/c it has selenium sulfide in it), which is weird but fine, if it works. So I got some and it's not blue nowadays; more of a blue-tinged green. In my flailing about with the stuff I splashed a bunch on the wall of the shower and my geek brain went "hey, it looks like I just murdered Spock in here!"
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (collage1)
Depo-provera is taken on a 12-week cycle.  I need to tweak my planning a bit, because my calendar reminder does not come up early enough (because of my dumbness in choosing the reminder pattern) for me to get an appointment for the next shot *inside* the 12 weeks.  The nurse said that there's a week of wiggle room--words to that effect, I don't remember what she said, because I'm TOO TIRED.   I didn't know that the endometriosis was making me fatigued until I started taking Provera and the fatigue went away (along with my periods, WOO HOO).  It creeps up again right toward the end of the cycle. I'm getting the shot on Thursday, which will be fine, but that will make it 13 weeks, including a week and a half of fatigue, bad skin, and random twinges. Next time I will wiggle that wiggle-room week over to the 11-week side of things and possibly stave off some of that.

I have a nice lovely stretch of hours to get things done in this evening, where I am not on Charlie duty for most of it (having had a full roster of him for most of the weekend), and I really want to get some things done, since next weekend I'll be working. But I suspect I'll just play Peggle instead. FEH.
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (collage1)

 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.

 


marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (ShutEye)
marydell: My hand holding a medusa head sculpture (by me) that's missing its snakes (Charlie)
I've never been crushed by the pain of being infertile...it's been more of an ache. I have a lot of nieces and nephews, so my genetic gifts are sufficiently represented in the next generation without my own contribution. And my relationship with my body is one of mutual disdain, most of the time, so I'm mostly ok with missing out on the pregnancy/childbirth thing, although I'm a little sad about it.

Being childless has been painful, but that, too, is something that hits some people harder than it hit me. I have so many happy childfree friends that I've been able to consciously move past the default raised-catholic idea of "life without children is meainingless." For myself, I had to do some serious thinking about what would give my life meaning if I never had kids. And I've spent the past couple of years seriously focusing on those ambitions, and I plan to go on that way now that I'm a mom, time allowing. He's going to grow up and move away eventually, after all, and people who live vicariously through their kids are a real pain to have as parents.

Which isn't to say I haven't yearned to be a mom. I have and have and have, and the journey to get here has sucked a lot. But all of the pain of that journey is melting away now; I really don't care about the pieces I've missed out on, because everything that matters to me is here with me now. [I almost said "in my arms," good lord, mommy hormones or something are inspiring me to write sweet, cloying prose! Thank god my brain said "no he's not, you can't type with a baby in your arms, you moron, and who do you think you are, anyway, L.M. Montgomery?"]

The pain of endometriosis, on the other hand, does NOT melt away. Normally I take flexiril for my godawful, debilitating cramps, but it makes me too sleepy to care for a baby, so today I'm just taking huge amounts of advil and thanking the gods that my new baby is snoozy and that his daddy has mostly figured out how to keep him dry during diaper changes so I don't have to do them all. Ohhh I miss my couch. With luck we can go home tomorrow.

April 2013

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