Invisible Illness awareness week Meme - 30 Things About My Invisible Illness You May Not Know

The following is a meme I've filled out for Invisible Illness awareness week. Which is Sept. 14th - 20th. To find out more about this meme, or to fill it out for yourself click here.

30 Things About My Invisible Illness You May Not Know

1. The illness(es) I live with is: Rheumatoid arthritis, Fibromyalgia, & Poly Cystic Ovarian syndrome.

2. I was diagnosed with it in the year: PCOS - 1999, RA - 2005, FM - 2009

3. But I had symptoms since: 1994?

4. The biggest adjustment I’ve had to make is: How I pace myself, and what actually does get my attention and energy.

5. Most people assume: That I'm lazy, an over eater, and unorganized. None of these are true.

6. The hardest part about mornings are: Moving. I'm so stiff and sore and tired in the mornings. I rarely make plans until afternoon, and I miss many church services due to morning troubles.

7. My favorite medical TV show is: Scrubs. I'm not really into the drama based ones. Too much gore. But Scrubs is funny, and actually still teaches the viewer a thing or two about health too.

8. A gadget I couldn’t live without is: Bathroom handrails. And I'm angered by how many public places don't adequately clean the handrails in their handicapped stalls.

9. The hardest part about nights are: pain induced insomnia.

10. Each day I take 4-20 pills & vitamins. Depends on the level of pain and vitamin deficiency. (No comments, please) I also have a couple creams I use as needed, and an injection I take every other week.

11. Regarding alternative treatments I: Know a very small handful that are actually helpful. Like ginger & MSM cream for arthritis, and cinnamon for insulin resistance (as part of PCOS). But the vast majority of it all is snake oil and of no help.

12. If I had to choose between an invisible illness or visible I would choose: Well, this is a tough one. PCOS is partly visible as it's caused me to gain a considerable amount of weight in my lifetime. And people are wicked and judgmental when they see an overweight person. On the other hand, I often think, if people could see the pain I'm in maybe I'd be believed more. So I really don't think I have an answer for this one. I think both are hard struggles to live with.

13. Regarding working and career: I don't think I'll be re-entering the work force. I'm struggling enough to keep home and need more support.

14. People would be surprised to know: That on my best of days I still feel the need to limit myself, because when I don't, I pay for it the next day.

15. The hardest thing to accept about my new reality has been: The cost of medications and the lack of income. I struggle with the idea of contesting a case to apply for SSI. I didn't work long enough before becoming ill to qualify for disability benefits. So all this is a very real strain on our income.

16. Something I never thought I could do with my illness that I did was: Participate in the Arthritis Foundation fundraiser walk! I didn't do the 3 mile plan I had hoped. But I still raised around $200 AND made it around the 1 mile course!

17. The commercials about my illness: Are really out of touch. The medications for RA help, but I've yet to be on one that fully gives me my life back as they seem to display. PCOS doesn't really have any commercials for meds anymore. For a while there was Vaniqua... I tried that - it did nothing for my facial hair growth & caused my skin to break out horribly.

18. Something I really miss doing since I was diagnosed is: LONG hikes. I still love to go on nature walks, but can't do anywhere near what I once could.

19. It was really hard to have to give up: The idea of carrying a child. It still breaks my heart. But my PCOS symptoms make this a very small possibility, even with the best of treatments. Plus. My husband and I agree, when it comes to growing our family, funds will be better spent for adoption than for infertility treatments that will most likely fail.

20. A new hobby I have taken up since my diagnosis is: Social networking. I'm here on FB and Blogger to meet and connect with others who have the same issues as me. It's been hard to find friends who have these same problems. So connecting on line has become a major support for me. I also really want to get into digital scrapbooking since working with my hands is hard. I've given up on a lot of physical crafts, but still enjoy being artistic.

21. If I could have one day of feeling normal again I would: Shop the mall, walk on the beach and hike the full trail to Wallace falls.

22. My illness has taught me: To ask others for help (still teaching me that and kicking my butt doing it.) To rely on God for EVERYTHING! And to draw closer to Him!

23. Want to know a secret? One thing people say that gets under my skin is: "Try this!" or
"Have you tried this?" To be honest, I'm working every day to find ways to better my quality of life. Often things others have suggested have already been tried, and with failed results. It just brings up the whole frustration of hoping and failing all over again.

24. But I love it when people: Help me with my physical needs. A kind young man holding open the grocery store door means the world to me!

25. My favorite motto, scripture, quote that gets me through tough times is: 2 Cor. 4:7-18

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. For we who live are always being given over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh. So death is at work in us, but life in you.

Since we have the same spirit of faith according to what has been written, "I believed, and so I spoke," we also believe, and so we also speak, knowing that he who raised the Lord Jesus will raise us also with Jesus and bring us with you into his presence. For it is all for your sake, so that as grace extends to more and more people it may increase thanksgiving, to the glory of God.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

26. When someone is diagnosed I’d like to tell them: Get connected. Don't let yourself feel like you are alone in this. Find others on-line or in your community through support groups, who have what you are dealing with. You'll learn loads for how to cope, what to expect, and you'll have support of others who know what you are going through when those around you don't.

27. Something that has surprised me about living with an illness is: How bad and apathetic some doctors can be. When you need to make appointments all the time, you start to really scrutinize the quality of your care.

28. The nicest thing someone did for me when I wasn’t feeling well was: Make meals & bring them to me, or buy food and bring it over. On my worst of days I miss meals because it's too hard to cook.

29. I’m involved with Invisible Illness Week because: Rest ministries has become a valuable ministry to me. I've been able to connect with so many others and share prayer requests and stories with others. There is HOPE; both in faith in Christ, and with fellowship with others. Even if that fellowship is over the computer.

30. The fact that you read this list makes me feel: Valued. You took the time to read what this all means to me and my life. Thank you! Thank you for caring for me as a human, and the needs, both physically and emotionally that I have as a result of the illnesses I have.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

RA and PCOS

Doing a search for the two terms together I often find many message-board sites where women are trying to reach out with others to see just how previlent this combination is, and it is if you look at all the posts, but what I notice in all my searching is that there isn't much in the way of medical info about this.

* Both conditions are considered genetic.
* Both conditions have deep impacts on young women, in life changing ways.
* Both conditions are improved (BUT NOT CURED) by a low carb, high "good-fat" diet.
* Both conditions feed of of their own symptoms and often make treatment hard.
* Both have depression or dysthymia as a possible symptom.
* Both have increased fatigue as a frequent symptom.
* Symptoms of both diseases often leave the patient with feelings of loss, loneliness, and isolation. A strong sense of not being physically whole or well.

Because of these cross-overs, it's hard to think of one as completely separate from the other.

When I got my diagnosis of PCOS several years ago so much started to make sense. Almost all of my medical issues fell under one umbrella now, and the diagnosis gave way for treatment plans and medical understanding. I wasn't causing these things to myself, but my body was causing them to me. As a few forms of arthritis have crept up on me before I'm even in my 30's, I've had to wonder well, does this fit all together too? I mean I have various forms of arthritis on both sides of my family tree, so I've always been well aware that I'd develop some form of arthritis in my life, but never did I really think it'd turn out like this. So I search the net...

The following is probably the best article I've found to date trying to piece together things for those of us with both issues. It seems to me like this article just confirms what my symptoms and pain levels already tell me, that one issue feeds off of the other and presents itself sooner for those who are unfortunate enough to have both diseases in their family tree.

Faces of PCOS

I haven't posted much about PCOS lately and I was thinking about how my recent treatments and such have kind of caused me to ignore that I also live with PCOS. I've talked about my infertility, but not really why I have infertility lately.

I've noticed that my depression, female issues, and arthritis pain have been pretty heavily linked lately. I need to restructure my treatment plans for PCOS, and because I haven't yet I'm feeling many of these issues growing again. Fortunately I'm not gaining weight, but I think that's because of how active I've been for the physical therapy I just completed. I'm hoping to soon buy a recumbent stationary bicycle to keep up on those benefits. I have an Ab lounge, which is fun, but it always aggravates my vertigo tendencies and I just don't want to live dizzy all the time, so I'll probably sell it soon.

My cycles have been completely messed up for about half a year now. A little over a year ago I switched from Lowestrin birth control, to Yasmin birth control. The result has been less control of my cycles, depression, insomnia, and fatigue. Now some of those issues could be PCOS itself, or depression itself, or arthritis... I just get to be a big puzzle. In any case, the cycle disruption was the reason I stopped that medication. Since I am no longer on any medication treating my hormones (I'm not taking metphormine either, until I can afford the meds.) I've started having 2-3 migraine headaches a week. More inflammation with my arthritis, tons of hair growth and I already wrote about my completely absent cycles.

I'm starting to search various sites to see that there are a fair amount of PCOS women who also have arthritis and how their two diseases link. I find it both depressing and affirming to see that there are other women dealing with both, and who see the treatment of both as being linked. As I find out more I'll try to post some links in regards to this, but if I don't and you're curious just do a web search for PCOS and RA or arthritis.

Since I'm poking around the soulcyster site again I came across some videos from fellow women with PCOS. I thought this following one was gutsy and worth a view. Her language is not for everyone, but her message is a very true issue; That hollywood and popular society give nothing but negative feedback and disgust to a woman with many of the physical symptoms of PCOS.

When I was in high school the only play I was able to be in, I was an old lady, a church lady set in her ways and picked on, and it just was depressing. I did the roll, and I was proud of my performance, but I was self conscious of the fact that my size was more of the character than my own acting ability. Fortunately I had loving friends and family in the audience and I just focused on having fun with the roll and pretending there was no one else in the audience.

I truly appreciate what Dove does with their campaign for real beauty. I wish more companies would be so caring and honest. It causes more harm than good to tell someone who is different how they are different. Why not bring people up and tell them how they are valued and exceptional. I never thought about myself as having great hair, or pretty coloring, or a face that naturally doesn't need make-up, but these simple beauties are true of me. I'm actually really perplexed when someone stops me to tell me my hair is healthy and beautiful because I don't focus on that, my whole life tells me I'm a failure for being plus size and that society looks down on this, in all honesty I have done nothing to myself to live like this. The poor people who eat high fat and sugar to cause their obesity have a much different issue going on, for those of us who are not the normal size tend to get lumped together with that group and it's very humiliating. I honestly do not like eating out because I don't want people around me to think it's what I eat, or overeating that has caused this. The truth of the matter is that 'over-eaters' has become, I think, too much of an issue in recent decades and now society is lead to believe that it's the only way one becomes over-weight. WHICH IS SUCH A LIE!

I'm not looking to write much more, I just wanted to write enough to set this video up. I think this gal is gutsy for willingly growing out her beard and trying to video it. The video doesn't show it that well, but as someone who has to deal with it too I could see it more than I'm sure others could. Well, here is the video. She puts it all on the line. Open and honest, if more people were this strong then maybe some of these ridiculous stereotypes could be smashed!



Here is one more I just saw and feel needs to be shared.

Yup infertility sucks

So the start of summer I had female issues making life unpleasant every other week or so (so I stopped taking the pill, I was fed up!), and then the last 2 and a half months I've had nothing! I did a pregnancy test again today. As always, not pregnant. Infertility and annovulation really messes with the mind.

Now I get the joys of going to another doctors visit and trying different drugs, and all while our funds for prescriptions for the year has run out. I'm seriously frustrated, we didn't put enough away. I'm down to taking only my arthritis meds and the rest of my body is going bonkers!
At least the pill is cheap, but I really don't want to be on the pill anymore... I guess I'll just have to talk about that at the next visit.

How many days left 'till 1/1/09?

Anne's kindest words!

The following is what my friend Anne wrote to me in the comments section of the post "Infertility my land of captivity!" I feel compelled to bring this post forward because I see so much truth in it!

Anne and her husband had many years of infertility. She also has PCOS. Lost her first baby, and eventually, through much effort has been blessed with a beautiful daughter! Kevin and I have known Sean and Anne since before either of us got married. Through the years it's been interesting seeing the journey's God is carrying us along, and how through our sorrows we are able to be helpers to each other.

Please take a moment to take to heart Anne's words. These are things I believe myself and I appreciate that she wrote them. Anne is someone who, while she isn't a childless mother, is blessed with a genuine sensitivity for her friends still longing for children, she hasn't pushed aside the struggle it took for her to get where she is now.

Crystal, you have eloquently stated the heart cry of so many women! Thanks so much for sharing. Even being on the 'other side' of IF, I still can't answer those the 'Why?'... it still haunts me. I have no answers, but I wish I could give you a big hug right now and encourage you.
Please don't worry about bringing others down!! If you can't be honest with your friends, without feeling judged or worrying they'll feel awkward, are they truly friends?? We live in a society that has a false sense of happiness - that is not the only valid emotion. And I personally think that it's the uncomfortable, awkward things that can help us grow. Society and The Church (!!!!) need to be aware of what goes on in the heart of an infertile young woman. A young married couple having kids is the accepted norm, and there are so many unbiblical and (I think) evil assumptions about IF in the church. The only way we will find the support we need and be able to reach out to others experiencing the same heartbreak is to share our story, share the depths and truth of the grief we encounter. It's a dangerous place to travel, because you will suffer rejection and misunderstanding and judgment. But there is a level of healing in sharing what's on your heart! And you will find the reward of friendship in places you didn't expect!!
With regards to the dream... I pray that it is fulfilled soon. And don't rule out adoption because of it! The friends I have that have adopted see those children as the children of their own flesh and heart. There is no difference to them. Despite my own doubts and unbelief, I DO believe that God can do miracles (Lord, I believe! Help me in my unbelief! Mark 9:24). Keep seeking His heart. Take steps of faith. It is the Lord who directs your path. (Prov 3:5,6; 16:9)
Love you!

Here is what I wrote back to Anne for her dear love and friendship.

"YOU ARE AN AMAZING FRIEND! THANK YOU for the kind and heartfelt comment on my blog post regarding my dreams and infertility. You're loving support is a God given gift to me! You're words of support brought tears to my eyes. Your story gives me hope for my own journey. I truly appreciate that you know the depth of the pain and darkness of such a struggle and you still love and support those you know suffering.
Thank you for your love!
Love,
Crystal"

infertility - my land of captivity

I've been battling in my head if I should post all of this or not, as I've been trying to post less personal things, but on the other hand this is something I feel needs to be shared. Something that is burdening my heart, and something I need others to understand.

There are two things in my life that seem to greatly alienate me from other women my age, and that's infertility and depression, and depression often feeds off of my infertility.

I feel this strong need to let others know just how badly this hurts, but on the other hand I don't want to bring people down, and I don't want to be told not to dwell on such things. If only I could life would be so much simpler.

Recently I found some old friends on-line, and when I do I usually like to dig out old photos to scan and share with them on-line. I was doing this again and these particular friends where from a time in my life when I was helping out with my mom's at home daycare quite a bit. Most all of the photos of me were with kids. Holding babies and pushing strollers, I was just a young teen, but I remember then thinking about how my hopes were to marry young and be a young mom, I did the marry young part, but my body had other plans. When those photos were taken they seemed natural and it looked like I'd enjoy life with kids from that moment on, but very sadly that hasn't been the case.

Lately I've been having dreams about holding our child in my arms. Usually she's about 2 or 3, chubby and with my dark features. She's a beautiful blend of the two of us. I never want to wake up from these dreams because I know during them that they're just dreams. I know when I wake up there will still be a messy quiet house with an empty nursery. I know that I'll wake up sad, feeling the sensations still seeming real, but fading as I wake. Depression and sadness filling that emptiness before I can even try to rationalize things as I become more awake.

The thing I keep hoping I can get across is the immense sense of loss this makes. Every time I wake up from these dreams it's as if I did have that baby and they have now passed away and are gone from me. It feels like a death, a death of someone I've never yet had to begin with. This sadness only grows the depression. And it starts afresh each time these dreams return. The process of grief keeps playing out only to start over all over again just when I feel like I have a handle on my emotions again.

I don't know why my life has always felt so certain to always include kids. I truly imagined that I'd be home-schooling children by now - not still waiting and hoping to open my arms to a child. I feel so horribly behind from what my dreams have been. I can't see how to make things happen when they just wont. I see my nephew and nieces get older and older, and wonder if they'll even care about my kids when and if we ever have them, or if by then they'll be too old to connect with our kids. These worries break my heart. I think about this with all our friends too, I see them all growing wonderful families and I wonder, by the time we have kids, will everyone be done? Will I be forced to meet new people and have more circles of friends just to insure that my kids will have someone to play with? I just can't understand why Kevin and I are left so far behind.

I'm tired of grieving, I want to wake up and know that the baby in my arms in my dreams is the same one in my house, but he or she still isn't here. It hurts like when my cat passed away, it hurts like when my grandpa passed away, it hurts like any other great loss... And yet only I have ever bonded with this child of my dream. Only I have seen the way they smile, the way they'd smell after a bath, the sound of their voice, only I've gotten to know them, so no one else feels this sense of loss. People may sympathize, but I grieve alone.

I really don't want to bring the moms I know down, but imagine your child, imagine the love and joy you have of the little things about them, and then imagine they just don't exist, I'd imagine you too would start to see how I can grieve a death of a person who's yet to live.

I know my life has too many issues right now. I know I can't even keep up with making all my appointments let alone someone else's life right now. I know my arthritis still limits me too much, that my inability to keep house makes the environment too dangerous for a wee one, and that God knows the best timing. But when I look back I just hurt more and wonder why this arthritis had to pop up now anyway!? We finally have a home, and I'm able to stay at home and not work, those things seem like perfect timing for starting a family... so why not now? All I can do is hope, I read Jeremiah 29:11-14 and ponder if this is a truth for me too, that this exile of mine will someday be replaced? I have to keep on believing that God has more for me. Why did He grow in my heart the desire all those years, only to keep me home alone, and in pain?

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you," declares the LORD, "and will bring you back from captivity."

So please Lord, bring me back, heal me enough to follow out these dreams. Take this burden of emotional pain. Show me this child that lives only in my dreams, let me love her, nurture her, raise her. Let me bring her up to honor You! Let this future family be an honor to You, that we may see others come to see Your love, salvation, and hope.

I can't understand this grief that fills my heart, and I want a way to heal and change. I've seen myself heal and grow from my other losses, I don't want this to forever burden me.

Give me hope Lord, give me understanding in how this is to happen, heal my broken lonely heart. Help others to be more sensitive of the words they share, and guide their hearts to know just how emotional and delicate this heart is because of infertility. If I've had it wrong all these years, if children is not what You've ever had in mind for us then I deeply need healing. I need to know why all these years We've been preparing for something that has never happened. I need to know why it was important to both Kevin and I when were were courting that we agreed on the fact that we did both want children someday. I need to know and understand why I have to live with all of this.

I do know that I've been brought close to women I would never have meet otherwise because of our common issue, I've seen friendships grow as we pray for each-other, and I know that we as humans need other humans and this is something God has His hand in. But the path is one I can't understand, I just have to look at the things I can grasp and wonder what else God is teaching me that I need to open my eyes and heart to see.

The other issues these dreams make for me is that of which path to take. In my dreams I have no doubt that the child is my blood. That she is made from Kevin and I, that she is our biological child. We've talked for years about adoption and foster to adopt and I have not closed my heart to such things, but these dreams make me feel this sense of considering anything other than natural childbirth as wrong. It's a new grief that I've never dealt with. I never thought I was this attached to having my own child. I suppose so much comes from watching the amazing journeys of all my friends who have given birth or are pregnant, and I know I wonder what it would be like for me if we were given that miraculous and blessed chance.

I don't know what else to write about, or if there is something I shouldn't have. This is immensely personal, and yet here I am feeling I need to share this with the world. But I know their are others who hurt like I do and yet still believe as I do. I know I need for those who care about me to know the grief I'm trying to deal with. I just want to heal, and it does me no good to keep this hurt inside and to myself. All it does is fuel depression and keep the cycle going. I hope this post is one that teaches and helps. It is not my intention to bring others down simply because I deeply hurt. I pray for understanding for myself, and for those who read this.

Three titles could go here.

I couldn't decide if I should focus on finding out about PCOS issues from my rheumatologist, or if I should focus on knowing that as far as my RA meds go, I've had them out of me enough to TTC, now I need to get my inflammation levels DOWN, something I've been struggling for ever since I started being treated for arthritis. BUT! WONDERFUL NEWS! I don't have to scrimp and save and only use Voltaren when I'm beyond desperate anymore. See, I was introduced to it several years ago when I was in Czech and found it to work for me amazingly well. My dear grandma has kindly provided me with tubes which I try to conserve, but wish I could have it as a regular prescription here. Well, after years of waiting the FDA finally released the cream form for use here in the states! YAY! My NP and MD said I'm the first to get it from them, they gave me a trial tube, so now I'm keeping one in my purse, and they gave me a generous prescription for this wonder cream! I went to get it filled and the pharmacist told me I was the first person he's filled it for and that the pharmacy only had one tube, so I'd have to come back in a day or so for the second tube I was supposed to get. But all this made me feel cool! FINALLY! I know this stuff works for me, so hopefully between that, and having a more rigid schedule with my oral anti-inflammatory meds I can get my sed rate down enough to get the go ahead from my RA MD to call the GYN MD and make the plans to TTC. It's feeling better! There is some hope here! At least from the RA end.



Now, as far as my arthritis goes, the Osteoarthritis in my hips is so minimal it shouldn't interfere with a pregnancy, my hips should still be able to handle it all. As far as the results that the SI joints looked fine on the MRI scans, the doctor, nurse and I all agree that it doesn't rule out spondylorathropy because of the symptoms I have, and that it's very common for nothing to show for the first couple years. And that also makes sense because when we first checked my hips we saw nothing, and then recently the OA was visible. I've read this to be common for many others on various blogs and message boards too.

The MRI results were even more of a mixed bag than I thought by reading the letter I received initially. So we still suspect Rheumatoid Spondylitis, found out additionally about OA, AND with talking with the nurse they found cysts on my ovaries. So I'm sure the gynecologist will want those to clear up first, or they may prevent my cycles from happening properly enough to TTC. I was slightly crushed to know the MRI inadvertently showed cysts, but not surprised, I mean it is a part of poly cystic ovary syndrome, and I've known I've had that for years. I guess now I need to pray that my hormones will improve. I know it's keeping my depression active, as well as making my blood sugar fluctuate a lot. I haven't been tolerating my full dose of metphormine so I haven't been taking as much as I'm prescribed, but it looks now that I need to suck up the unpleasantness and go back to the full dose so I can get my PCOS better under control. It all seemed interesting to be talking about that at the RA office. But I felt like my nurse and doctor were knowledgeable enough to treat me well then.

The visit there was over an hour! The nurse is a new one, the gal I was working with isn't there anymore it seems, and the new nurse seems to be just as good in my opinion. She took time to get all the details I could give her, and she gave me a wealth of information! I ended up visiting with the doctor as well in regards to the whole TTC while on certain meds issue. We're hoping that if I can get my inflammation down again that I can also get off the bio-logic injections, they can cause birth defect. So if the time comes that the Gyn gives the go ahead to TTC but my sed. rate is still too high I'll have to go back on prednisone. We're all hoping that I wouldn't need to, I gained 20 pounds the last time. I was able to loose it all after I was off it, but to gain weight while pregnant wouldn't be healthy either. Basically the issue is that if my total body inflammation continues to be an issue, my body stress would effect the growing babies body stress too, and that wouldn't be good. So, in the mean time I have my new cream, new plan on how to take my current meds, and referrals for both an orthopedic doc and physical therapist. I was bummed to find out the physical therapist in town doesn't take my insurance anymore, so hopefully there is someone in the next town that can or I'll be stuck driving to the city (Everett) for treatments.

OK, to recap...

* I still probably have diagnosis of Rheumatoid Spondylitis.
* I also have rheumatoid arthritis.
* I also have osteoarthritis.
* I also have cysts actively on my ovaries.

What a mixed bag. I pray the cysts pass on their own without issue. The one time I had one rupture it was so painful I finished the bottle of Vicoden from when I had oral work done. If any of these cysts decide to rupture, I'll be headed to the ER in the next town at the general hospital, I don't like that, they didn't take care of my father in law in a timely manner when we took him there a few years ago. He was/is fine, but we were put off by how slow it was. I guess it's the trade off of living out in the country. I do wonder if I'd really need the ER if the same as last time were to happen. I'd probably be OK to wait for daytime and go to the urgent care near Kevin's work, our doctor is there, but they don't have all the same resources. Well, I don't need to plan a course of action here, it's not always true that they rupture, the body can amazingly absorb them pretty well too, so I'm hoping that'll just be the more pleasant case. None of the cysts are so big as to require surgery (at least for now), for that I am grateful.

I was sent to get my hands x-rayed to make sure my RA isn't causing any damage there still. And with the visit taking over an hour it ended up being lunchtime when I was done there. Where all the medical places are in Bellevue there is only a Burger King and Whole Foods. I didn't want junk for lunch so I went to Whole Foods. OH MY GOODNESS! It is so expensive! I mean I've shopped at Whole Foods before, but it's been a while since that is the closest one and it's about an hour away. Anyway, 30 some dollars later and I had lunch, a couple reusable shopping bags and a reusable feminine pad, something I've been thinking of trying. I LOVE the shopping bags! We've been buying the reusable ones when we can because we're sick of always having to get rid of plastic bags, but we've found that the reusable ones that most stores sell end up starting to bust the seams after a few uses. I have several sitting by the sewing machine waiting for me to mend them. Anyway, the large ones I got from Whole Foods seem VERY sturdy, they're made with two layers of material so I think that will help too! I bought two bags, maybe in a few weeks at my next visit I'll pick up a few more.

I ended up being out so long that after I got my x-rays done it was almost time for Kevin to get off work. I called him, he called his car-pool buddy and I ended up being the one to give him a ride home. I sat in the parking lot at his work for about half an hour, which I totally loved. The day turned out so nice. It was cooling off as high clouds were rolling in, with the faintest amount of rain, and the birds were flying around and singing, I just sat and took it all in while I waited. It felt like such a blessed time of peace, a real gift from God, just for me!

After I picked Kevin up we went grocery shopping and home and dinner and bed, so I didn't get to work on my crafty things yet, but Tuesday is looking pretty calm so I think I'll work on things in the morning. I'll also check the veg starts and see if they revived from the rain after the heat, I know I did. If so I'll tend to them.

Well, I've had very little sleep lately, so I'll end here for now. I know I wrote a lot of abbreviations. But I think I covered them all in context, drop me a comment if something was confusing. Writing at 3 in the morning doesn't make me the most coherent.

So to recap, please pray about my cysts, right now those are going to be my biggest hurdle with trying to conceive. Please pray that I'll get my inflammation down enough, gain more mobility again, and that physical therapy will prove to be of help. It'll still be about 4 months according to the doctor before I'd expect to be able to move as freely again. It'll take time for physio to work. We hope that the OA won't continue to worsen and stay relatively about the same as it is now.

Well, I think I got out everything I needed to write about from the day. I'll head back to bed. I was sleeping well until the cat started to climb the screen so I had to wake up to kick him out of the bedroom. That woke me up enough to want water, and then the day started rattling in my brain so I thought I'd just get up and share, but now I'm ready to go back to bed.

Good night friends, and please pray with me. Thanks!

I censored myself.

The following is more of the post I made a few posts back, about my latest R.A. clinic visit.

I censored myself because of some hurtful words I was told recently, that 'you'll regret it when you finally do have kids.' To save from drama I'm not saying who said it, just that those words continue to sting, and it's been extremely hard talking to said person since.

Here is what I posted on my private blog that I didn't post here. I hope all who read can be mature and refrain from posting 'pat answers' that don't really help. I'm sharing a two-fold vulnerability of mine here. I hope my dear readers can respect that.

'I went to the Rheumatology clinic on Friday. Told my nurse about how Kevin and I are hoping to TTC in the next couple years. She wanted to know how soon, well, of course the sooner the better, right? Well, we start going over my meds, I now have things all different, new meds, lots of vitamins and lots that I've been taking that I need to stop taking. The crappy part is waiting a minimum of 6 months for these meds to change! Add to that however many months/years PCOS-caused infertility adds, plus 9 months if things go right... It just doesn't seem fair that the time adds up so much so quick, maybe we should just keep waiting for a baby to fall from the sky for us. I mean, we're too poor to afford to adopt, I probably have too many health issues to qualify for foster care as I'm almost disabled with my arthritis. I don't want to give up, but I feel like everything is against me.

But to grow our family has always been a dream, when Kevin and I were courting we talked openly and with great joy about how we'd parent our children. We spoil our cats, and know that when we finally do have kids they'll be treated much the same, because our love for them has been growing in out hearts and will continue to, for years.

I know this is all I ever write about. I'm sorry for that. It's also my biggest burden, the thing I pray about daily, the constantly fresh wound that keeps my depression active.'

So there it is, be nice. I'm in a poopy mood this week.

I'm wearing pants I couldn't wear since I was 24!

That's a loss of 26 pounds since June! I wish all this weight-loss would make my RA get better, but I guess the constantly changing weather won't let that happen! At least I'm grateful that between Byetta, and Metphormine that my body is doing what it's supposed to with food! It's amazing how a disease like PCOS can make so much happen one way, and how by taking the right medication to treat it I can have my body do the things it's supposed to! I hope things continue to keep going this good. Maybe soon I can wear the clothes I bought when Kevin and I first got married, those are just a size or two away!

Woman to Woman - Infertility - Life as a childless mother.

The topic this week for Woman to Woman is infertility and recurrent loss. It's something that has been a huge heartache to me. Something I rarely talk about, but also something that greatly effects me.

For men something that can destroy their self image is loosing a loved job and feeling like they can't provide. For women, I think the equivalent is infertility. I don't often talk about my infertility because I don't want insensitive comments or pat answers that don't really help the pain I have to deal with.

DLH and I have been married 7 and a half wonderful years, and a few months before we got married I found out I have Poly Cystic Ovary Syndrome. I had spent all my teenage years hiding myself because no matter how much I worked out and ate good things I would gain weight all the time, and then there was the acne, sweating, and irregular cycles that would make me sick for days when I'd finally have a cycle. Having a diagnoses was a good thing, and something that helped me feel a bit better about myself. I grew up constantly wondering what I was doing wrong, but then learned I wasn't doing anything wrong, my body was.

Since we weren't planning on having kids for a few years (I was still in college, and we lived in a tiny condo) it wasn't that tragic then, but I still had to process a sense of loss, I felt like less of a woman. I always wanted to be two things all my life, a wife and a mother. I've always believed that if I couldn't have kids that we'd adopt, and we're still hoping that might be in our future if God reveals that plan to us. However, every time a friend or family member is able to announce a new birth or have a baby shower and so on, I hurt. I can't help it. It's a reminder that I can't yet be who I always dreamed I would be. The life of a childless mother is full of little painful reminders.

Recently I read a blog post about a mom who was ranting about how hard things where with her house full of boys, and I was bitter, I couldn't think of anything to console her with, all I could think was how I'd just be so grateful to be able to have even just one child to raise. I'm sure there are those who would say I'm missing the picture here, that her issue is being overwhelmed. But my issues is I am as well, but for me, it's what rattles in my head. It's easy in this fallen broken world to get frustrated with the path we have to walk down, and so strange for others to see how these things bother us. That being said, I don't expect women who have kids to understand my pain. I know there are other things in life they can empathize with, but not that. As a result this leads to lots of isolation, loneliness and doubt.

I often wonder what God's plan is for my husband and I. I am married to a wonderful man who I KNOW will be a good dad, and yet I can't readily give him that gift. Does God expect for me to risk the odds of miscarriage and to try infertility treatment. Invasive, and painful, and expensive? Or does He want for us to adopt and bring in children who need a home into our home? And with both, how will we meet the additional financial need to make either of those options happen. When we're stretching our grocery bill as much as we are these days it becomes a rather depressing thing to think about. We don't know if we will ever be able to afford becoming parents.

I'm not sharing all this wanting pity. I just want to share a part of me I rarely talk about. This is deep and painful, so it takes a lot for me to be willing to share anything. My DLH and I have missed church on every mothers day that we've been married, and we left a church because it was so family focused we were asked every Sunday when we were going to have kids. I spent most Sunday's coming home in tears. It was hard to Sunday after Sunday explain to yet another person that we can't have kids, but that we'd give anything to have a family. After we left that church we never heard from any of those people again. It was strange and painful.

I love being an aunt and a God-mother, but it's just not the same thing. I don't get to tuck them in every night, or do their laundry, I don't get to make all their meals and know each time they cry or laugh. I try as best I can to know what my nieces and nephews are into, but when I only see them maybe once a year, it's hard for them to even really know me. I love them all dearly, but it just isn't the same.

PCOS has a cruel trick to those women who deal with it. If untreated annovulation can really play horrible mind games on her, constantly wondering if the reason why she hasn't had a cycle is because she might miraculously be pregnant. I spent the three years we didn't have health insurance constantly praying over pregnancy tests that I always knew what the answer was, and yet still my body wasn't doing, it seemed anything it was supposed to.

I could try infertility treatment, but I also know that my odds of having a miscarriage is much higher then other women, and it'll be hard just to get to that point. I don't know that I could handle the pain and heartache that would most likely occur if I were to finally conceive and then loose it. It is so much expense to try and with having the odds against me so much I'm just not sure what to do.

Recently I had my Gyno annual. I complained about lower groin pain that I've had for several years now, both my doctor and I feared it was cysts or some other female issue. With PCOS there is a very serious increased chance of ovarian cancer. It's something I pray for protection from often. I was poked and prodded, had a couple ultrasounds and.... NOTHING! That's a good thing! But it still made me wonder what was going on. A few days ago I found out that it's one of my other chronic ailments, Rheumatoid Arthritis. So that's not so bad (well, it's bad in it's own sense, but it's not life threatening.) And the exams having good news seems like a good thing, but then it also makes me wonder if I shouldn't be trying more to grow our family. Knowing my ovaries actually look normal with this disease I have is an amazing thing, but I also know that in the past as soon as I've gone off birth control pills that has changed, another cruel trick of PCOS.

What do I mean by sharing all this? Just that I seek prayer. I want to know God's will for Kevin and I. I want to know what His plan is for us. Why has He given me such a motherly heart to always be a childless mother? I have so many questions. I tend to not think about it unless I have to because it can make me easily depressed. I'm already taking anti-depressants. But I also don't want to ignore the elephant in the living-room either. It's also something that can easily become a fresh wound. Something that somedays won't effect me, and other days totally crush me. I know many of you won't be able to understand how I feel. That's OK, this is my pain. I know you probably have something else in your life testing you.

Even through all my frustrations and grief I still know God has a plan. I know He wants what is best for my husband and I, and I know that with living through this I can better be able to relate to others who need healing and help them see the hope God gives. I don't have all the answers now, but I trust God's plan. It will be made clear in His time. In the meantime, I wait and pray, and hope and love my future babies, even if it's nothing more then a dream.

Today's rhuemaqtology visit.

I had another visit with my rheumatology nurse today. She says my groin pain is my arthritis. Yay, me... another area effected. Just a few days ago my grandpa had his hip worked on, how soon 'til that's me. As depressed as all that sounds, my mood has been fairly good recently.

New muscle meds today, as well as another RA med. With the colder weather these days we'll see if that helps. Apparently my labs say my sed rate is still high. I've got to find that article on women with PCOS having a hard time getting their sed rate down... if you know of one drop me the link in my comments.

Also need to find an eye doc... guess that goes on the to do list.

Not much else really.

I've been on Beyetta for almost 2 weeks, I'm not having the nausea side effect so that's good. Still am having a hard time loosing anymore weight, though the stuff the nurse gave me might help along those lines too, it's be nice if I had that side effect.

Well, I'm off to have lunch and take my first pill, here's hoping it'll do something. She poked and prodded me so I'm pretty tender, I was already sore before too.

Should make an appointment with GP soon, no other pending appointments.

Just a quickie

Just a quick couple of notes...

1.) I'm having a heck of a time posting to anyone! Doesn't matter if it's typepad, blogger, lj, I just can't seem to keep a connection during posts. Kevin has had issues with secure sites. We're getting really fed up with our internet (lack) of service. But such is living out in the country and having to have internet by satellite!

2.) I'm spending a fair amount of time on the soulcysters.net site. comment if you want to know my profile there.

Another awesome PCOS video.

My cousin and I are in this video! Yippee, spreading the word about PCOS and effects on women and family and such. Beautiful song with it too. Take a couple minutes to watch this great video.

Check out this video: PCOS and Who We Are

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Yay me!

Between our anniversary and my birthday (6/10 - 8/23) I've lost 13 pounds! 13!

What did I do different?

Followed my doctors advice to increase my Metphormine medicine, and I ate more dairy like milk, cottage cheese, and yogurt. Yup, that's it!

I'm so jazzed! I hope I continue to manage my PCOS this well. I know it's always a balancing act, but right now I feel like it's the first time I'm really winning!

Pair that with my anti-depressants working and also being relatively pain free this summer (my arthritis is also not bothering me so bad!) and I feel like I'm on top of the world!

This just really shows to me all the more that my size is not what I eat, but what my body does with it. Just thought I'd share how good I feel.

Some of the many faces of PCOS

No Soy, more articles...

The thesis isn't completely far fetched, and the science has been said many times over. I've come across the "evils" of soy from reading PCOS the Hidden Epidemic and it was from that book that I realized soy needs to be examined a lot more then it is readily accepted. The scientific truth of the matter is that soy has very high levels of estrogen, and male or female, having high levels is not a good thing.

A little while ago I was working a food bank and my station was handing out baby products. I had a very tough job because I saw all these moms in need and many of them went without getting formula for their babies because most of what the bank had was soy formula. Not a single parent took the soy formula, they wanted rice or anything other then soy. I've read stories of the effects of soy formula on infants and it makes me wonder why it's even still made! And if needy families would rather not take it and suffer with having to make ends meet in other ways doesn't that say something too?

The article I came across today was from a blog post I randomly came across. I didn't bother to keep the link to the blog I got it from because the responses were all shallow and it was obvious they didn't read the entire article, they simply reacted to the fact that someone was offering up a theory that does have scientific basis.

Now on to the articles.


Against GM(genetically modified) soy


About.com - Thyrod issues made worse by soy consumption.

PCOS info video on YouTube.

Mystery Diagnosis - PCOS part one

Mystery Diagnosis - PCOS part two

Mystery Diagnosis - PCOS part three

PCOS Association Conferance

Just call me the loopy Lupus lady...

So yesterday I met with my doctor and he agreed with my Rhumatologist that Lupus seems to be what I'm dealing with. He gave me some pain pills which I was hesitant to take, but they're supposed to be better for me then the Alive I've been taking most days and he had a letter from my rhumatologist who was suggesting that for me too. He also gave me some skin antibiotics that are supposed to be more heavy duty then the over the counter kind. It's kinda gross, but I've had these moles on my neck as long as I can ever remember and this last week one of them just decided to split open and get infected. That's what I deal with these days. When I catch the same cold as others I'm out for weeks when they're out for days, I get a cut or scrap and it gets infected. But looking at it through the eyes of starting to understand Lupus it all is starting to make sense. I'm not unfamilular with this process in understanding health issues because I dealt with a simular thing when I was diagnosed with PCOS. From what my doctors can tell the two don't seem to be related. There are a few ways they could be, but it's very slim. I just happen to be someone who has both. And the strangest thing is they are both considered "orphan diseases" meaning they're rare and hard to diagnose, and now I'm looking at having been diagnosed with two, its just kind of weird to me.
So yesterday was quite the roller coaster. During the morning I kept hitting time black holes or something. I'd look at the clock, think 5 minutes passed and look at the clock again and it would be 45 minutes later. Amazingly I still made it to getting the car to the shop for an oil change and some brake job. I walked from the auto shop to my doctors office and it felt nice, the weather was so nice. It wasn't too hot, but it was sunny and clear.
After the doctors appointment I walked to 7-11 and got some water and nachos. Not a great choice, but I needed to snack on something. As I sat at a nerby table I could feel eyeballs watching me. It really made me self concious about eating in public. Then this stupid jerk shouted out at me, "Hey Shamoo!" I didn't move. I was livid and insulted, but I didn't make any outward acknowledgment. Their light changed and they drove on, but it just really ticked me off. I ended up tossing half my chips (they were too salty anyway) and I walked on to the bookstore and waited for Kevin to come get me since we're leaving the car at the shop. The comment really didn't make me mad because of me, but because I had such a hard time believing someone so stupid actually could exist! I feel sorry for them and I kept thinking about how they just weren't raised right.
After all that happened we stopped in Monroe to get some dinner and while I was in the parkinglot my wallet fell out of my pocket. I never put my wallet in my pocket for that very reason, but yesterday I did. I came home to hear a message from a good Samaritan who had found my wallet and wanted to know where to meet me to return it to me. It just seemed kind of strange to me that I'd see such a jerk of a person and such a kind soul all in one day. And all on the same day that I started getting some important confirmation about my health.
So yesterday used up all my spoons, and I think I ended up borrowing against today's spoons, which with having walked approximately 7 blocks I'm not too surprised. I'm just going to kick back today, read my new book and watch the news.
I'll know more next week after I meet with my Rhumatologist again. I look forward to making an action plan with her as to what I need to take and what I need to avoid. I thank all of you for your loving words and prayers, it means so much to me. Thank you!

I've been trying to see if anyone else has both or if anyone has noted any connections...the only thing I've found has been this conversation.

What it's like to be sick.

I came across this link while looking up if there is any connection between PCOS and Lupus, or others who have both, etc. I really liked this women's story and could really relate to it so I'm posting it here.

PCOS... I know I have, but Lupus too?

I don't know, My Rhumatologist seems to think so, but she's still doing test. I'm spending time in the mean time resting (like I have to be told to do that.) and researching. I came across a cool website/message board that I may keep visiting just for PCOS but one of the topics was for PCOS and Lupus. The person posting was wondering if anyone knew of any connection, or had both or anything like that. The posts that followed revealed nothing (a common problem on message boards I find.) and since I might have both I guess I'm making this post serve as a marker for that topic so I can revisit it when I know more.

Here's the link.

My aunt rox!

I just wanted to give a shout out to my dear aunt! She's always doing something for me. She's started to regularly wax me and while I don't have less hair when it comes in again it seems to slow down a little how fast it does come back. At first it was 4 days later and I had hair all over again, now it's more like a week and a half. I try to see her every other week or so now, and tweeze in between. Maybe someday the two of us can get this under control. I'm still thinking of doing lazer someday, but the cost kinda keeps me from it right now. Waxing and tweezing (at least for me, because my aunt is cool like that.) is free so free vs big bill kinda is a no brainer.

To all the super sweet ladies on Myspace who keep talking with me, you rock too. I suck at making new friends, but I like knowing there really are other women out there going through what I go through,

Tea as preventative medicine for Ovarian Cancer!

Archives of Internal Medicine - Tea Consumption and Ovarian Cancer Risk in a Population-Based Cohort

Not sure what to think about this article yet... I still need to look over it. But when I heard this mentioned on the news I had to take a second to look it up.

Miracle vitamin!

It hasn't been a cure all but my life has gotten a lot better recently! I was looking for new books on the subject of PCOS/IR and I found other readers mentioning in their reviews that taking Chromium helped most of their painful symptoms.
Since I'm still without health insurance I can't take the IR medication I need so I was getting frustrated seeing things spiral out of control again. I was gaining weight again, sleeping too much again, very painful muscles in my feet and legs and lack of menstruation/ovulation for almost a year! All these things, including a growing depression again kept me looking for answers and everything pointed to needing to try supplementing Chromium in my daily intake. Many of the symptoms I have (that are significantly less now.) are the same for people who have a Chromium deficiency.
So I bought a basketful of vitamins. I started a one a day as well as Ester-C and Folic acid in addition to the Chromium. In the matter of two days I stopped having the leg and foot pain that was so painful I'd cry to sleep and 4 days later virtually no leg and foot pain. After a week I started to have a period and most importantly to me I've stopped gaining again and my sleeping is getting to a more normal schedule and I don't feel so depressed.
I'm just so amazed that taking certain vitamins has made such a difference for me. But I know that I was so skeptical about it doing anything that I don't think it would be a placebo effect and I highly doubt that having menstruation would be from a placebo.
I'm feeling stronger again. I had been very weak and then again after the onset of menses but now I'm starting to feel very healthy again. I think I've finally found some really useful info beyond just reducing the Carb intake in my diet.
I'm hoping now that I'll loose some inches because that is one thing that hasn't changed so far, but with the stop in weight gain and with the recent boost in energy and decrease in pain I do hope I'll start to see this happen soon. I'll also have a body wrap to take off some inches and heal my skin in June (we're going to wine country for our anniversary.) so I'm hoping I can do what I can before then to make for the most dramatic results.

Dr. Dave

He's one of the team teachers in our Sunday school class and he told me that with talking to his colleague’s he's learned that my sinus infections (which I have a few every year for over ten years now!) and other infections are most likely a part of my PCOS. This is really interesting! I'm looking forward with meeting with him to see how he may be able to help me in addition to my REI OB/GYN.
He's a naturals doc so it's not like a total real medical doctor, but from what I know it's almost just as much schooling.

PCOS/IR (just a reminder...)

I changed this thread from PCOS to PCOS/IR because I'm finding that treating the IR (insulin resistance) is making huge progress for my PCOS. I'm also finding that the two are pretty tightly related.
Dr. Atkin’s has lots of great info on IR and diabetes, but he didn't really get into PCOS from what I've seen. But I haven't had a chance to read any books yet... just the free articles so far so maybe there is something that the Atkin's research institute might know about PCOS that I should look into.

PCOS/IR

So last Thursday I finally got a good doctor for my PCOS! I'm so stoked! I am now on Metformine and I can feel it helping my energy already, I hope it helps everything else. I'm gunna go back soon to yet again check for diabetes and think that this time I might just come up as diabetic as it's been harder to stay awake and I get so hungry all the time. I'm also having a hard time sleeping because of allergies so I'm just a mess. I'm getting about 4 hours of sleep and then 12 hours of awake; I have no schedule right now... I guess that helps but I feel so screwed up!
An odd thing about the doctor’s visit is that I'm not permanently on birth control pills, as in never stop for a period. It's kinda weird, but it'll save on the grocery bill.
Anyway, I plan on keeping track of my PCOS symptoms/progress here.
My goal is to loose 30 pounds this summer, which should happen with the Metformine, as my body will actually, used some of the energy I eat. And I'll sleep more normal, something I'm eagerly looking forward to.

I also must take aspirin therapy, as my doc is worried about my heart. I got three strikes there... my dad's heart attack, my uncle's death from heart attack a few years back and my PCOS screwing with my blood sugar/ blood pressure/ cholesterol.