September 12th-18th is Invisible Illness Week. We all know that awareness is so important, and part of events for that week is the 30 things that affect us living with illness, and perhaps will help to gain a wee bit of understanding.

1. The illness I live with is: Endometriosis, fibromyalgia, interstitial cystitis, vulvodynia, vaginismus, lupus (SLE), bipolar disorder
2. I was diagnosed with it in the year: 2005, 2006, 2007, 2008, 2011.
3. But I had symptoms since: For years… .some my entire life, some just a few years…. most since my teen years at the latest.
4. The biggest adjustment I’ve had to make is: Listening to my body
5. Most people assume: That because I’m so young I can’t be so ill.
6. The hardest part about mornings are: Getting out of bed, whether it’s actually am, or just when I wake up.
7. My favorite medical TV show is: None, I can’t stand them! – The closest I get is Sons of Anarchy, where one of the women is a doctor.
8. A gadget I couldn’t live without is: laptop/pc
9. The hardest part about nights are: When it starts cooling off more my pain goes up.
10. Each day I take a minimum of 8 pills & vitamins….. usually I add at least 4 or 5….. in the form of pain management.
11. Regarding alternative treatments I: Don’t usually take them, but I am willing to consider them and talk to my doctors about them. I do have an alternative treatment I use to help my liver with all the other meds I take.
12. If I had to choose between an invisible illness or visible I would choose: I really don’t have an answer for this. They both come with different challenges. I think I’d stick with what I know.
13. Regarding working and career: I am currently unable to work. I’m trying to get my health back enough to work part time again.
14. People would be surprised to know: How it is so hard some days and so easy on others….
15. The hardest thing to accept about my new reality has been: losing hopes and dreams, and struggling to get them back.
16. Something I never thought I could do with my illness that I did was: have a biological child, and deliver vaginally.
17. The commercials about my illness: are terrible. At least the PSAs about lupus, done by lupus patients are ok.
18. Something I really miss doing since I was diagnosed is: signing
19. It was really hard to have to give up: sign language
20. A new hobby I have taken up since my diagnosis is: crocheting
21. If I could have one day of feeling normal again I would: go to the beach and play in the ocean with my kids.
22. My illness has taught me: that I can and will survive through a lot of difficult times!
23. Want to know a secret? Sex hurts, and I usually pay for it afterwards, but Johnny and I still have a sex life through it all. (This is HUGE when you understand how sex is (or rather ISN’T for most people with chronic illness who I’ve spoken to)
24. But I love it when people: Try to understand and learn about what we are going through.
25. My favorite motto, scripture, quote that gets me through tough times is: “Don’t cry because it’s over. Smile because it happened.” Dr. Seuss
26. When someone is diagnosed I’d like to tell them: Research. Lots of research. Advocate for yourself off that research. If your doctor isn’t treating you how you think they should be, get another opinion (3 years into diagnosed lupus I’m going to be doing this soon, if things don’t change during my next appt, as my lupus has become more active again). Listen to your body.
27. Something that has surprised me about living with an illness is: I’m not really sure…. I guess how much of a difference just having a name for what’s wrong with me changes things.
28. The nicest thing someone did for me when I wasn’t feeling well was: make a meal for me, or clean the bathtub for me so I could take a bath.
29. I’m involved with Invisible Illness Week because: We desperately need awareness and research and understanding!
30. The fact that you read this list makes me feel: so very grateful to you and for you being in my life!

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1. The illness I live with is: Endometriosis, Fibromyalgia, Interstitial Cystitis, Vaginismus, Vulvodynia, Systemic lupus erythematosus (SLE, Lupus), allergies, depression.

2. I was diagnosed with it in the year: Allergies – mid 1990’s (officially, though we’d talked with doctors about them earlier than that); Depression – 1999 or 2000; Endometriosis – 2005; Fibro, IC, Vaginismus, Vulvodynia – 2007; SLE/Lupus – 2008

3. But I had symptoms since: A lot of them have been since I was very young, the depression was when I was a teen… not even sure on the fibro and IC, they were hidden by the others.

4. The biggest adjustment I’ve had to make is: Ummm… so many adjustments… having to plan out even trips to the store and make sure I’ve covered the what ifs, because they’ll likely happen if I’m not ready. Wearing braces on my wrists (and sometimes other joints) when I have to drive more than a couple of miles (and even then I should be wearing them for driving). Not being able to just go places, either for errands or with friends.

5. Most people assume: that because I’m young and (mostly) look healthy I couldn’t possibly have as much pain as I do.

6. The hardest part about mornings are: … this is split into two parts… getting myself out of bed when I hurt, and managing to get myself some breakfast and something to drink so I can take my medications.

7. My favorite medical TV show is: Umm… I don’t have one lol! That’s one of the genres I just can’t seem to get in to.

8. A gadget I couldn’t live without is: Our laptop. When I’m stuck in bed or on the couch I have to have it because it is my link to the outside, and my friends and family help keep me from sinking into (worse) depression. It also provides excellent distractions in the forms of websites, forums, games and so on.

9. The hardest part about nights are: Not being able to sleep in one position all night very often, even with extra pillows and padding under and around me… I end up waking up to move at least two or three times a night, a lot of times I move more often than that.

10. Each day I take __ pills & vitamins. (No comments, please) Individual pills – Up to 14 or 16. Different meds/vitamins – 7 or 8

11. Regarding alternative treatments I: do a lot of research and have probably already heard of and looked at what you may be thinking to suggest. I appreciate the suggestions (as long as they are given with the right attitude… tellign me “This WILL cure you/stop your pain/take care of your symptoms” is the fastest way to get me to ignore you and blow off your advice), but don’t be upset or offended if I tell you that either I have tried it and it didn’t help, or I won’t try it because I’ve already looked into it. I do have a supplement I take when not pregnant to help my liver, and I will be possibly adding some other things into my treatments when I can safely add things again, but Johnny and I both do research, and I discuss things with my doctors before adding them, and I take research with me if it’s likely my doctors aren’t familiar with them, so we can make the best decisions for ME and MY HEALTH ISSUES.

12. If I had to choose between an invisible illness or visible I would choose: Visible

13. Regarding working and career: At this point just being a mom takes a lot out of me… I’m hoping to work at least parttime again, but full time is not an option, and part tiime is hard. If I can start working again it will definitely have to be something flexible that can be done out of our home.

14. People would be surprised to know: just how much has to be done for me some days that I can’t do on my own, vs just how much I do on my own some days.

15. The hardest thing to accept about my new reality has been: not being able to take care of everything I need, or the mental stuff…. there are days where I can’t communicate well at all because I’m unable to come up with words….

16. Something I never thought I could do with my illness that I did was: Be as happy in my life as I am. My life is hard, and I do deal with depression, but I am blessed and I have a wonderful family and wonderful friends and so many awesome things happening in my life…. even as depression touches it all and makes it hard to deal with, I am incredibly happy at the same time… which is an entirely weird feeling.

17. The commercials about my illness: Hmmm…. I know there are commercials out there, but I don’t have tv so I never see them. I know there is a great project out there called Could I have Lupus. I think fibromyalgia may have some commercials too? I’m not really sure.

18. Something I really miss doing since I was diagnosed is: being in the sun (at all) without it causing rashes, trouble sleeping, headaches, even easier sunburning than I’ve lived with all my life. I admit I’d been in the sun less and less leading up to my lupus becoming diagnosable… but the option was always there. Now I can’t even garden in the ground, it’s all got to be in flower pots and things that can be moved into the house or in the shade where I can care for them. :/

19. It was really hard to have to give up: being able to do what I want when I want to.

20. A new hobby I have taken up since my diagnosis is: crocheting

21. If I could have one day of feeling normal again I would: want to know ahead of time so I could travel to California and spend it at the beach with my family (my kids, Johnny, my sister(s- including inlaws) and my parents and cousins and aunts and uncles and grandmothers and whoever else) and and friends.

22. My illness has taught me: to be more patient with others (generally, still learning this one lol) because I don’t know what illness or other issue could be affecting them.

23. Want to know a secret? One thing people say that gets under my skin is: but you’re too young to have all those health issues. Lupus, endo, etc. don’t know ages. Actually… I take that back… pretty much everything I have is most likely to become active during reproductive years, and most likely to do so in women…. so they do know age… young ages. My age has both nothing and everything to do with my being so ill. Nothing because it doesn’t matter how young I am I do have these, and everything because I’m am in the age range that most of these things strike in (not counting allergies or depression)….

24. But I love it when people: give me hugs, ask how I’m doing, tell me I’m strong.

25. My favorite motto, scripture, quote that gets me through tough times is: If You’re going through Hell, keep on going.

26. When someone is diagnosed I’d like to tell them: They are not alone and it is possible to live with all of this. I also wish I could give them hugs. It’s a hard road, even if it is livable.

27. Something that has surprised me about living with an illness is: I can’t think of anything, because I’ve been ill my whole life, I just didn’t have names for most of it until my 20s. I guess it would be the validation that having names for these things would bring.

28. The nicest thing someone did for me when I wasn’t feeling well was: Hmmm… are we counting all the awesome care and spoilage I get from Johnny? When he’s able to he makes special meals for me, he brings home surprises from the store for me when he can, all the care he gives me with taking care of things I can’t do. Otherwise…. cards and gifts that have been sent, especially the ones that have been complete surprises.

29. I’m involved with Invisible Illness Week because: Well I haven’t been as involved as I’d have liked since I’ve been super busy with medical appointments this week (including traveling out of state to see one doctor because the closest one in state is at least 6 hours away)… but I’m taking part because these illnesses affect so many people, yet so few people outside of those of us affected and our close friends and family members know about them. We’ve GOT to raise awareness! And we need understanding from people!

30. The fact that you read this list makes me feel: so special and so appreciative. The fact you took the time to read this means the world to me.

To learn more about Invisible Illness Week visit this site. If you’d like to do this meme, the blank form can be found here, and please leave a comment at the bottom with a link to your post about it if it’s posted somewhere that you can do so (like a blog) so that everyone can read it!

A woman is like a tea bag – you can’t tell how strong she is until you put her in hot water. – Eleanor Roosevelt

I like this quote, which one of my aunt’s posted as a facebook status last night, and which inspired me to write this. I know a lot of really strong women, and they’ve gone through a lot of really hot water that has made them show that strength. A lot of my friends say I’m a strong woman too… and although my feeling is that I”m just playing with the hand I was dealt and living the best I can, I suppose if I were watching someone else walk my life I’d call them strong, so looking at it that way I guess I can agree that I’m strong.

A few weeks ago (I think that’s the timeline) a friend and I were discussing one of the photos I still have from my wedding with my ex husband.

The above photo is the one being discussed. It’s a (now deceased) family friend and I, who I used to be a parttime caregiver for. I would go to his house between college classes a couple days a week and make sure he had enough water, if he needed food I’d prepare it for him and give it to him, we’d sit and watch tv together, etc. The friend I was discussing it with commented that I looked really happy and healthy in the photo. I then mentioned that none of my diagnoses were made (other than the allergies I had at the time) until after that period in time. At that point she said something about how hard it must be to deal with all of it coming on so quickly… which led to me making the list of all of the diagnoses in the past 5 years that I’m about to share.

I was diagnosed with endo Nov. 2005, Fibro and my vulvar and vaginal issues in Dec. 2006, the bladder condition (IC/Interstitial Cystitis) in Jan. 2007, I was told I’d end up with lupus (due to already having signs, just not enough of the diagnostic criteria was met yet) in March or April 2007, and diagnosed with lupus tentatively in Nov. 2008, and positively in Dec. 2008.

That seems like a lot of hot water. I’d also like to say that I have had allergies since I was a child, I had asthma as a teen (which is now in remission and has been for the past 7 years almost, but is still certainly there under the surface) and I have dealt with becoming ill more easily than most for a long time (stupid autoimmune issues). Also – 4 miscarriages in 2ish years. That’s just the health and health related stuff too, it doesn’t include the stuff that has happened in my personal life (some messes I got myself into as a teen, some messes with my parents, sexual harassment (or was it abuse or somewhere in between? I don’t know how to define it, although marital rape is a good word for at least some of it) and verbal abuse from my ex, leaving my ex, and so on)…. but each thing has made me stronger. That’s part of why I say I wouldn’t change any of it. Oh there has been a lot of stuff I’d never want to go through again… but it’s made me.. well.. me. And it’s made me strong. The fact it’s made me strong and I know I can survive, and have more of a fighting spirit towards adversity than I ever expected is part of why I’m …. why I wouldn’t change it. I can’t say I’m glad to have gone through all of it, but I’m glad for how it has shaped me. That water has been very hot, but it’s also made me a stronger person, and in some ways (though I realize I can be very bitter) it’s made me a sweeter person as well, in that I am more compassionate towards others than I think I ever could have been without going through this stuff.

I’m not looking forward to Nov., Dec. or Jan….

Anniversaries in those months:

Nov.
Endo
Lupus

Dec.
Fibro
Vaginismus
Vulvar Vestibulitis
Lupus (confirmed by rheumy)

Jan.
Raynaud’s Phenomenon
Interstitial Cystitis

So all in all the last 4 years have not been kind to me in those months…. and that’s not even including the other issues I had during them… that’s just the diagnoses…. :/ I’ve also had 3 different surgeries spread throughout those months since I was 18. Two of them have been in January. So those are just not good months for me. :/

I just wanted to let everyone know that I am preparing some articles/posts/writings on vaginismus and vulvodynia and the way I personally have dealt with the issues, as well as how E and I have worked through them.
This will be split into a two part (at least) series, and one of these will include very sexual information – that one will include a disclaimer for any friends and/or family not wanting to read about my sex life, as well as for any squeamish and/or sensitive readers who are not interested in reading about things of that nature.

So I thought I’d start my blog out by posting some links to explanations of each of my illnesses.  I plan to add these to the links on my sidebar as well, but wanted them accessible in my journal.

By the way, I do not know much html, and the site my sister sent me to that had all the things I would be using has been forgotten….. (new computer, so I don’t have my old bookmarks), so unfortunately until I come back and edit it, you’ll be stuck with long links on this entry.

Lupus, my newest (and one of the most dangerous) diagnosis, just diagnosed on Monday:

http://www.lupus.org/newsite/index.html is the lupus foundations main page.                      

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=71&zoneid=9s is an introduction to lupus, and to their “what is lupus” section of the site… more links are available on the left sidebar of this page, with all sorts of information about lupus.  They also have links at the end of each article to more information, some on their site, and some at other sources.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=310&zoneid=9 Types of lupus.  Some of the types listed also break down into other types of lupus, such as the discoid lupus, which, if I’m not mistaken has 3 or 4 subtypes.  I have SLE or Systemic lupus erythematosus.  I also may have one of the forms of discoid lupus.  My rash, called a butterfly rash, and some of the other issues I have seem to point towards me *possibly* having a form of discoid lupus, though I’m not sure on whether I do or not at this point.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=74&zoneid=9 A list of symptoms.  Mine are as follows:  Achy joints / arthralgia, Arthritis / swollen joints, Prolonged or extreme fatigue (also can be caused by my fibromyalgia and my endometriosis), Skin Rashes, Butterfly-shaped rash across the cheeks and nose, Sun or light sensitivity / photosensitivity (I’ve had this as long as I can remember), Raynaud’s phenomenon / fingers turning white and/or blue in the cold, Mouth or nose ulcers (my cold sores start out normally and turn into cracks or ulcer like things on the corners of my mouth, I also have sores that develop in my mouth that I was told fit into this), and an ANA blood test result of 462 when they did the test last week.  Normal on the ANA according to my doctor (I haven’t checked this myself yet) is between 0-99.  As I joked with E yesterday, I passed that test with flying colors!

Endometriosis (which I count as the other most dangerous, because of the treatments for it, and the fact it has the biggest chance of taking my dream of having children from me) is the diagnosis I’ve had the longest, as I was diagnosed in November 2005, after dealing with it since my period started, around January 1999.  Some great places to get information about it are:

http://www.endometriosisassn.org/ the EA or Endometriosis Association

http://www.endometriosisassn.org/endo.html an explanation of what endo is from the EA

http://www.endocenter.org/ the ERC or Endometriosis Research Center                                                    There are also a few books I have read that I recommend are anything by the EA, Endometriosis for Dummies, and Living Well with Endometriosis: What your doctor doesn’t tell you…  … That you need to know.  Dr. Redwine, one of the top doctors in the world from what I understand, has a new book coming out… today I believe, though I’m not sure of the name to include it here, and obviously I have never read it.

Interstitial Cystitis (IC), which was diagnosed during my second laparoscopy (surgery for my endometriosis) in January 2007.  I have non-ulcerative IC. Some places for IC information include:

http://www.ic-network.com/ the Interstitial Cystitis Network homepage.

http://www.ic-network.com/whatisinterstitialcystitis/ An introduction to what IC is

http://www.ichelp.org/ The Interstitial Cystitis Association homepage

http://www.ichelp.org/WhatisIC/AboutIC/tabid/416/Default.aspx The ICA’s explanation of IC.

Fibromyalgia, which I have a diagnosis of from 12/2006.  Some links for fibro include:

http://www.fibrocenter.com/content/home.jsp The homepage for the Fibro Center.

http://www.fibrocenter.com/content/about.jsp Information about fibromyalgia from the Fibro Center. 

http://www.fmaware.org/site/PageServer The National Fibromyalgia Association homepage.

http://www.fmaware.org/site/PageServer?pagename=fibromyalgia The NFA’s fibro info page

Vaginismus, which was diagnosed 12/2006. Some links are:

http://www.vaginismus.com/ A website dedicated to vaginismus

http://www.vaginismus.com/faqs Frequently asked questions about vaginismus, including what is vaginismus.

Vulvar Vestibulitis, which was diagnosed 12/2006  Some links:

http://www.nva.org/ The National Vulvodynia Association Homepage

http://www.nva.org/about_vulvodynia/what_is_vulvodynia.html An explanation of Vulvodynia and Vulvar Vestibulitis