A Perplexing Journey

November birthday's!

2009-11-11T07:18:00.000-08:00

November is a month that so many of my friends and family have birthdays. My husband's birthday is this Sunday, my grandfather's birthday was in November, my cousin's husband's birthday was a couple days ago (SORRY I DIDN'T mention then Chris, but we hope you had an awesome birthday!) And now today looks like it'll be another birthday! My cousin's water broke a few hours ago and she is in active labor right now. Waiting for more news as to the arrival of baby Charles or Amelia!

sicky fibro flare

2009-11-10T17:18:00.000-08:00

I'm still dealing with a fibromyalgia flare from doing a bunch of housework on Saturday, so I'm still giving myself grace in posting daily. My hands have an aching burning sensation with this flare, so typing for very long is uncomfortable. I had hoped to write on the topic of chronic grief today, but will have to move that over to one of the other free posts. It is a fascinating topic though, and I encourage anyone who is down because of chronic illness to look into chronic grief as it may help you understand better your personal stresses and give you a better perspective on how to talk with others about what you are dealing with, and how to gain the support we all need.

Simple Woman's Daybook

2009-11-09T16:04:00.000-08:00

FOR TODAY... from Crystal's Daybook

Outside my window... a cool, cloudy day.

I am thinking... I'm too hungry to wait much longer for lunch

I am thankful for... all the help we received on Saturday getting so much yard work done. I'm still paying for it physically (my participation) but I'm so thankful that so much got done.

I am wearing... PJ's, as usual. I'd say, it's my right as a disabled housewife.

I am remembering... how much I'm still craving BLT's and wishing I had cooked it when I wasn't so hungry so I could just have it ready now.

I am going... lay low for a while until this latest fibro flare dies down. That's also why I have some tardiness with some of my NaBloPoMo posts right now.

I am reading... 2 Corinthians

I am hoping... to get the dishwasher running a load of dishes sometime today, so far my legs are disagreeing with me, but I'm not surprised they were up all night (restless leg syndrome)

On my mind... eager to see our first snow day of the season, it might be tonight or tomorrow night, I hope so, I LOVE snow!

From the learning rooms... Still waiting for my god-child's arrival, which is a good thing since the due date is the 2nd, but baby has been showing so many signs of being eager to come on out.

Noticing that... my arm really stings, I burned it cooking soup a few days ago and now the skin has peeled away and is raw, very unpleasant. As I type I feel it more. :-(

Pondering these words... people who are normally healthy rarely can understand the depth of the dysfunction that is chronic illness, and that when you're sick more often then not things pile up not because of a lack of organization, but because of a lack of strength and energy. I'd love to have my old life back, but if I can't, I'd love for people to at least recognize this about me.

From the kitchen... BLT's and tomato soup tonight. On Sunday Kevin made our yummy pumpkin cake and we might have the leftovers of that for desert.

Around the house... is looking a lot better, but still needs help before we have guests for Thanksgiving.

One of my favorite things... Looking out the window and seeing that each day the snow-line on the mountain is a little bit lower and lower.

From my picture journal...
The type of walker that would be a true blessing if I could own.

Abby Johnson, Fighting for Life (Foxnews Nov 7 2009)

2009-11-08T12:55:00.001-08:00

This is so heart-wrenching! No matter who you are you need to watch this to see what this woman has to say about why she left her job as a director of a planned parenthood. The truth needs to be known!

Faith and depression

2009-11-07T17:17:00.001-08:00

Faith and depression is a topic I scheduled for today. And I know I won't be able to give it justice in the next few minutes before bed so I'm going to post a video from John Piper, and then post my response. I hope to revisit this topic later as I have MUCH to say about it being a dysthymic and a Christian.

I've greatly struggled with relating my depression to others, and I know that's true for anyone with depression, but I've found I think there is an additional difficulty when relating it to other Christians as so many focus on their joy in the Lord. And I certainly DO have my joy in the Lord. However, this sadly doesn't change what is chemically going on in my body both because of brain chemistry and chronic illness.

The following is my response to the video.
As someone who has dysthymia I feel the need to speak up in response here. Dysthymia is a very real and hard to diagnose depressive illness. It often goes undiagnosed and untreated because those around the sufferer don't see the depth of it all like they would with major depression. It still needs medical treatment and the help of a psychiatrist, both verbally and medically.
I mention all of this specifically because sometimes "Eeyore personality" is exactly the way to describe dysthymia.

Another viewer commented my post with affirmation saying;
"I second that.
Doesn't matter how much I pray, worship, or meditate on the bible, the dysthymia won't go away. It's like my mind is frozen. "

I do want to further clarify that I admire Pastor Piper for speaking on this matter. It is true that there are those who are unnecessarily medicated. I also know that my Christian faith has & continues to be the center of my treatment. My comment is to raise awareness about dysthymia through clarification; it is hard to diagnose & generalities can discredit the need for medicated treatment.

I then agreed with the person who responded to my post and said, 'I think you're right, it very much is like my mind is frozen (w/o treatment) too.'

Free post

2009-11-06T16:59:00.000-08:00

Missed Friday's free post, but it was because I slept 20 hours yesterday! So since this is (chronic illness/RA/Hypersomnia) illness related I'm giving myself a pass and publishing this now as Friday's post.

Thankful Thursday

2009-11-05T16:44:00.000-08:00

I'm thankful that I have this sleep study coming up!
I couldn't sleep all night again, and then slept the day completely away, only to wake up super stiff and sore. I woke up mid way from a nightmare, and again when I got up.

I've been keeping up with my sleep (or lack of) journal and I'm getting to a point where I can clearly see I need to make copies of it for all my doctors and myself because it really shows a lot of sleep problems. I'm thankful I have this journal too because I don't think I'd be as clear about what all the disturbances are with out it.

I'm sure that to anyone new to my blog this doesn't seem very thankful, but more tongue in cheek complaining, and trust me, that's not the case. The theme is trials anyway. And this issue with sleep is certainly a trial of mine.

Well, I'm going to keep this short, just because of how sleepy I am. I hope you who read this can see the thankfulness in it. This is the trial I'm dealing with right now, and I'm thankful for the things happening that I hope will improve this situation.

Women with abortion regret

2009-11-04T15:54:00.001-08:00

I'm not going to say much about these videos because I think the message is fairly complete in them.

It is sad how many women's lives are so emotionally damaged by their choices and it really takes understanding and internalizing stories like Robin's to know just how serious post abortion stress is.

It's such a blessing that these women were able to find healing in being honest with their loved ones and through counseling. Sadly many women still suffer alone in silent regret not knowing that there is a way to move onward.

Flubbed already, so here's a quick free-post.

2009-11-03T17:15:00.000-08:00

So the time is 1:06 am wednesday morning and I realized I didn't log on to write soon enough for Tuesday. So lets pretend this is Tuesday's post. I was also planning on making this post one of my more serious posts, 'Post abortion secondary infertility'. However I'm still working on that article and it isn't quite ready. Considering this isn't completely scripted out and I was thinking of having a free post for Wednesday I'll post free post right now for Tuesday and hopefully finish the other post later in the day for Wednesday.

'Today' (Tuesday) I saw a pulmonary specialist. I've been dealing with bad pain induced insomnia which keeps me from readily falling asleep and staying asleep. Fibromyalgia is one of the things to blame, but with talking to the doctor (and I knew this ahead of time too) I'm dealing with some additional sleep disturbances. So I'll be having a sleep study soon to find out more information about what's going on. I actually am really looking forward to this as I believe it'll give both the doctors and myself more information that'll better equip us as to how to help me achieve more restorative sleep, which really, hopefully will help with my pain management and fatigue.

I'm thankful that I have such a great rheumatologist. It could be thought that he's just trying to pass me on to other specialists (since he also made sure I saw again an endocrinologist to treat my PCOS) but personally I think it's important for a doctor to know what they know well, and know who to refer to to help with the things they don't have as their specialty. I think too, this will give my rheumatologist more information as the test results will come back to him as well. In all I feel like my medical team is shaping up and while it will always be work to balance things and find my ideal level of functioning with disability, I do think those now involved have my genuine care in mind.

Simple Woman's daybook

2009-11-02T10:27:00.000-08:00

Outside my window... High clouds and a damp ground, though it doesn't look like it will rain just yet.

I am thinking... about how my boy cat is trying so desperately to pack on weight for the winter. Any time he sees me eat he wants what I have, he has plenty of cat food all the time.

I am thankful for... all the housework my husband did over the weekend. I'm pretty ill right now with pain and fatigue from Fibromyalgia and have been a bump on a log. I recently adjusted my meds some so I'm getting some sleep again and slept TONS over the weekend. We missed church because of it, but I'm so thankful for the sleep I got as I have such a huge sleep debt from only getting about 4 hours if that for most of the nights of October.

I am wearing... A PJ shirt and pants. This will probably always be my response unless I have an appointment or it's Sunday and I'm going to church. If I'm staying home all day I stay in PJ's. With Rheumatoid arthritis and Fibromyalgia it's just easier on me this way, otherwise I take a LONG time getting dressed.

I am remembering... or trying to anyway, that we need to buy water, milk, eggs, and bread. Or I need to feel good enough and bake some bread.

I am going... to go see a pulmonary specialist tomorrow. I may end up having a sleep study done. Pain induced insomnia was really bad most of October and my Rheumatologist referred me.

I am reading... the Swiss Courier by Tricia Goyer and Mike Yorkey It's a great read! I'm really enjoying it!

I am hoping... to get a nap before Kevin gets home. I'm still super sleepy.

On my mind... I'm wondering if I bit off more than I can chew with pledging to participate in NaBloPoMo. I hope forcing myself to make a post every day of November doesn't prove to become stressful, I want to enjoy this.

From the learning rooms... Studying 2 Corinthians, and also trying to learn more about the process of regeneration, faith, and love so I can better communicate this process with others.

Noticing that... I haven't been drinking enough water. I normally am very good about it, but with being sleepy I'm forgetting to go refill my glass often enough. I'll get better again.

Pondering these words... "Salvation is by grace alone, through faith alone, in Christ alone, according to Scripture alone, to the glory of God alone!" And am thankful for the gift of salvation, and the change that the Reformation brought to the church.

From the kitchen... I'm eating leftover potatoes. I'm not really cooking much these days. Which saddens me a little, but it was super relaxing having dinner made for me and given to me last night! Kevin made steak, mac & cheese, and broccoli, and he did a great job!

Around the house... needs a lot of help, I've been ill for far too long.

One of my favorite things~ snuggling with my cat.

From my picture journal...
My hubby Kevin and I with our cats Maddie (the black cat) and Siggy (the orange cat) on Halloween. Sorry it's fuzzy, it's hard to get pictures of us with just using the tripod. And yes, I am wearing a tiara. I was a rock princess for halloween. All the neighbor kids loved it - I wore the guitar hero guitar slung over my shoulder!

My very first NaBloPoMo post

2009-11-01T16:16:00.000-08:00

Today is my very first post in participation with NaBloPoMo. I've been reflecting on my blog and how I haven't really been posting much to it lately. I have many things churning in my brain as possible blog posts, but a lot of things start turning into long articles when I try and focus on them, and then I loose steam with editing and never actually post. So, for November, and in an effort to get myself back on track with using my blog, I'm going to try and pick a few themes I want to work on and make my posts a bit smaller so I actually get around to writing them. Some of my themes will be a bit more serious, and others a bit easy going. I've decided that in order to better keep on track I'll also participate in the Simple Woman's Daybook posts on Mondays, so that will be one of my themes and some of the lighter posts. I also plan on shining light on different people groups and their perplexing journey's while still showing hope. I hope by doing so I'll keep to my blogs theme as well as participating more openly.

(As I'm actually working on this particular post a couple weeks early I'm still planning out the rest of the month, but I think so far I have a good start.)
To those I'll soon meet from participating in this challenge, welcome to my blog. To give you a little background about it I write about my life dealing with multiple types of arthritis, allergies, and infertility. I've been blessed with a great struggle of many health issues. It deepens and strengthens my faith as I have to grow my strength and trust in God. In addition I sometimes post about political topics that effect my perplexing journey as well. Particularly health care reform, topics surrounding medications, and the pro abortion/ pro life debate. I understand these topics are not for everyone, however I make no apologies about my views & feelings.The posts I make are my views and this is my blog, I would hope that readers who comment will be respectful of my views. I pledge to do the same as well.

About blog commenting. I preview all comments before they are allowed to publish to my posts. I did this because when I had commenting fully open I was getting more spam comments than actual comments and it was a waste of my time and my readers time. Please know that you won't see your comment on my posts immediately as I will only be approving comments about once a day. Duplicate comments, spam comments, and disrespectful comments will all be denied publication. This will be at my personal discretion as time permits. Thank you for your cooperation.

If you are a NaBloPoMo participant as well and you have a blog or posts that you believe I'd be interested in based on the feel of my blog feel free to leave me a comment telling me how I can find your blog. I think by following others it'll help us all have more ideas on how to keep on track with making our posts each day. Thank you for taking the time to visit my blog. God Bless.

"Persecution or a Great Awakening" - Paul Washer

2009-09-30T22:43:00.001-07:00

Coping with Crises on Top of Chronic - Chat with 2 Gals Who Understand

2009-09-15T16:47:00.001-07:00

Two amazing women chat in this topic. Hannah's Hope is such a gem of a book to me as someone who often feels like I'm in such a small group, of people who live with chronic illness and infertility.

Coping with Crises on Top of Chronic - Chat with 2 Gals Who Understand

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Just a quick update.

2009-09-09T12:03:00.000-07:00

The outpouring of love and support I got both on here and on Facebook, as well as at church in regards to my last post has been truly encouraging. A big thank you to everyone who is stepping forward and helping out.

As an update. I have been on anti-depressants, as a treatment for fibromyalgia, for about a week and a half. Kevin has noticed a big difference in my ability to do things and said he's heard less comments about pain and stiffness. I'm still dealing with a lot. And seems like I'm dealing with more cramps. Particularly in my feet and knees. But overall I do think I'm fairing a bit better.

Over the holiday weekend Kevin and I worked in the front yard and got most of the berry bramble chopped down. We have a mountain of bramble in the middle of the yard now. There is still much yard-work that needs to be done, but that was a huge part of it all. I felt very accomplished because I worked along side Kevin for much of the time!

On an almost completely different topic, the following link takes you to a video from AccuWeather that debunks global warming (in California wildfires.) and actually shows that we're in a trend of cooling for the next couple decades. I know I've changed this blog to be about illness and faith, but this is one topic that still seems relevant to me here since weather greatly effects my symptoms. Winter months are often rough for me. And if this does play out, as Farmers Almanac also claims, it'll mean that I need to plan ahead better for the foreseeable future as to how to stay warm, and what I need to do to manage pain.

I think that's about it. I am looking at the info about global cooling and more snowy winters here in the PNW as a cautionary warning but not something I'll be really alarmed about. I have hope that this new diagnosis and new treatment will help me cope better this winter than in the last couple winters. Even still, I think I may need to invest in an electric blanket this winter! ;0)

Needing to vent - I really HATE summer, when my birthday is, and asking for help.

2009-09-01T15:29:00.000-07:00

The following was a very hard post to write and is both personal and candid. Please respect that I wrote this out of honesty and humility.

As a kid, my birthdays always were depressing because they fall like a week or two before school starts. So hardly anyone would ever come to my birthday parties. My 16th was probably the worst. I had invited EVERYONE I knew, it seemed, and a handful came, and half I wasn't really friends with. I felt so alone and miserable. Year after year.

As an introvert, maybe others think that being celebrated with lots of people isn't important to me. And to be honest, large parties do drain me. But it's always felt like no one cares when MY birthday rolls around. This year felt different. And for that I'm very grateful, but it was still hard for other reasons. I LOVE all the sweet comments from all of you who wished me happy birthday. And I had the best vacation in a very long time all thanks to my dear sweet cousin Tracy who took Kevin and I with her and her guys to a resort for several days! I felt so spoiled! I still need to edit and upload the photos. I hope to do that soon. When I need a smile now, I've been scrolling through the photos on my camera.

Even with a wonderful birthday things are still weighing on me. This time of year is the worst for Kevin at work. There is so much to do as all the schools are gearing up and starting the new school year. He's working longer hours and coming home so tired. More often than not he'll eat dinner and 5 minutes later be asleep and I'm left with the mess of the house and all alone all over again. This feeling alone in my own home really makes me hate infertility all the more. While I was with my family for my birthday I felt so much better! Being loved and accepted felt so good. I was crushed when they went home. I don't expect those of you who have kids to understand any of this, but when it's just me and the cats at home, it becomes insanely lonely. It just seems like even though my school year days are behind me that the school year calendar still effects my every August no matter what.

Since the start of May I've been dealing with a cycle of fibromyalgia flares turning into arthritis flares turning into nasty colds and all over again! This has been an unusually hot summer and the heat fatigue has really made life miserable! It really has been one thing or another for several months now! Only this last week am I feeling a tiny little bit better. But now the place is a dump. The dishes have piled up, and the litter box area is a mess. The yards both need tending, and berries (the remaining good ones) need to be picked. There is mountains of laundry to put away. And loads of paper to shred and recycling and trash to take to the actual dump. Kevin is a wonderful husband and I love him very much, but he hasn't been able to help either because he's already burning his candle at both ends!

I need help. Not advice nor suggestions. But physical help. It frustrates me to even have to ask, especially because I fear others will think wrong things about it. But I can only stand for so long and it's really keeping much from getting done. My shoulders lower back and feet have been bad for quite some time and let me tell you, it makes so much impossible.

I HAVE HOPE! And so does Kevin! Fall is coming, and hopefully in a month or so things will slow back down to normal for him. I have new doctors and new medications and I'm waiting on results with hopeful anticipation. I just have to believe that things will get better. But for now it just feels like Kevin and I need so much help and have no support. To those who do help, you mean the world to us! And We've been so blessed and thankful for the times before when others have lovingly stepped forward to help us with physical things.

We've received some hurtful remarks regarding the state of our home and I feel it extremely important to make this note as a result. Unless you are dealing with the stresses we've been dealing with you can have no way of knowing what is happening. Please be supportive. I am a good housekeeper and have had times when the home is clean and orderly. Before I was chronically ill I didn't have these struggles with housekeeping. If you dealt with the issues I do you'd have the same struggles too! From my other chronically ill friends with the same disabilities I have, I've seen I'm not alone in this hurt & struggle. I just hope those who are able bodied could please be more understanding. It's very hard to ask for help, especially when I may need it more often than others. To those of you who feel like you want to help but can't see any way to physical help, please just pray. Pray that those who can, will help. That things will get more normal for Kevin at work very soon. And that my new medications will better control my symptoms. Prayer is such a huge help and I know that my prayer warriors are who helped me get my new doctors, and prayer helps get me through each day. Another way others could help is I still need a walker. The kind you can turn around and sit on. I check the thrift stores, but all I ever find are the kinds that can't be sat on. I know this will be a huge help. I've been trying to save for one for so long, but when there is so many other things that always need to be paid for, it just hasn't happened yet.

Prayerfully written,
Crystal

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

2009-08-30T23:51:00.000-07:00

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

Putting a face to who ObamaCare will negatively impact.

2009-08-06T21:03:00.000-07:00

I've done my share of telling people why I'm afraid of what Obama's health care plan will mean for my own well being. Reducing my medications to less effective ones, and making pain management a very difficult accomplishment.

I've been spending lots of time talking with others who are chronically ill and what the effects would be for them. Let me just say, I don't really think there are any sick people out there who want this. I've been speaking with one gal who needs a neurologist, is on Medicaid and has been waiting 6 months for a doctor. She holds no hope that things would improve with this new system and actually believes it will break the current system of care to be even less effective.

I also have a friend who lives in Wales and has the same type of arthritis in the spine like I have. She deals with socialized medicine there. She doesn't seem to have much options medically. She's on a similar biologic medication as I am, but only because she was fortunate enough to win a prescription lottery. I know she's thankful for her ability to have that medication, but it does seem like one of the other brands might be better for her and she's expressed that she feels bad for others where she is who suffer as she does who are 'not so lucky'.

The following video is of one person talking out the reality she'd be faced with in 20 years, if this plan passes. Her other video is also pretty important too.

So for now I pray that I will continue to be able to afford the healthcare I have, which helps me keep the medical treatments my doctors and I choose as best for me. And will continue to work with the doctors I have to continue the best care I can for myself for as long as I can for myself.

The following video was passed on to me by someone who was pointing out the lack of TelePrompTer aid, but what got me going was what Obama was saying.

The following is my (edited) response.
"He knows nothing about illness! I've had to go to the ER twice for Asthma, both because symptoms came on heavy and quick. I have an inhaler and rarely use it. It also is not really any different than the over the counter ones."

The problem is he and the rest of the liberals pushing this forward are so out of touch with those of us who are ill and working as best we can with the current system. The president can say that it's not going to change my healthcare as much as he wants, but the history from the countries who've gone down this route say otherwise, and even loose lipped libs have said so. There is a video going around in which Barney Frank says the best way to a single payer system is to get a good public option out there.

The following video shows how this circle wants to use this public option to wipe away choice, leaving us with a single payer system.

To read more on this, click here for an article by NewsBusted.

Vaccinations, swine flu, and building immunity.

2009-08-05T10:58:00.000-07:00

On Facebook I just joined a group called "I will NOT take Vaccines for "Swine Flu"!!"

The reason is simple, many of us are already immune or working on immunity. This summer so many people have been sick. Think about it, does it make sense then to get an injection for something your body is already conquering?

I have not had a flu shot since 1995. Yes I get sick, but I did back when I'd get the shots too. I'd get sick from them even, so I stopped getting them in high school.

From what I have been hearing about swine flu it spreads fast, with how many of us have been sick this summer I'm sure a good chunk of us already have our bodies working on building immunity. Every flu season I tend to be one of the first to get sick, before a vaccine is available, & while multiple strains go around each year, I often wonder if what someone is injected with isn't something they've already dealt with & built their immunity for by the bug running it's course; an injection then is pointless & only runs the risk of harming ones body because of the other things found in an immunization injection.

Dealing with rheumatoid arthritis I have to keep myself healthy as much as possible. But I've found I fair better by eating right and taking my vitamins than by flu vaccines. The following video helps support this idea.

I have rubber bands around my knees & my feet still are lead balloons. But I'm thankful for the HOPE I have in Christ.

2009-07-29T14:07:00.000-07:00

It really does feel as though I have rubber bands around my knees & my feet are lead filled balloons. This stifling heat-wave here in the Pacific Northwest is doing nothing to help my already swollen limbs full of edema. While these things certainly are trying they do not consume me, for I'm thankful because of the HOPE I have in Christ.

Job 2:10b says: Shall we receive good from God, & shall we not receive evil?" In all this Job did not sin with his lips.

Job was enduring many trials, tests, & afflictions & yet he stood true to his faith knowing that the God who created this world with both good & bad would ultimately still be worthy of praise no matter what it was that Job had to live through. Through the book of Job we see him question why, but not rebuke God. In the end of the book we see that God richly rewarded Job, & that in the end Job's faith in God grew, as did his heart of thankfulness to God.

It's fine & good to focus on having a thankful heart. But if you are hurting or dealing with a burden it does no good to ignore it forcing yourself to only think thankful thoughts. Keeping quite can prevent others from knowing what to pray about with you or keeping them from doing God's will by helping to meet your needs.

In Matt. 25:43-45 Jesus says: 'I was a stranger & you did not welcome me, naked & you did not clothe me, sick & in prison & you did not visit me.' Then they also will answer, saying, 'Lord, when did we see you hungry or thirsty or a stranger or naked or sick or in prison, & did not minister to you?' Then he will answer them, saying, 'Truly, I say to you, as you did not do it to one of the least of these, you did not do it to me.'

If we tell people to not speak up how can we do as scripture says and bare each-others burdens? (Galatians 6:1-3)

I find GREAT COMFORT & HOPE when reading the promises in scripture. I will be honest and open and say when I am dealing with a great deal of discomfort or other burdens because I know I have a great circle of prayer warriors and lending hands around me

2 Corinthians 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.

Romans 5:3-5
More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.

A birthday wish

2009-07-24T14:21:00.000-07:00

My 30th birthday is coming up soon and something I'd like is to raise funds for Ankylosing Spondylitis Awareness. You can visit this link to join in my fundraising as part of my birthday celebrations! Thanks in advance to any and all who help participate!

Steven Crowder talks Socialized Obamacare with Neil Cavuto

2009-07-16T16:25:00.001-07:00

When others don't understand invisible illness.

2009-07-14T04:14:00.000-07:00

One of the most frustrating things about having an invisible illness is when others look at you and think you should be completely capable because you look fine. Some days, living with RA, that can be completely true and I can do a lot. But most days I'm happy to eat three meals, spend some time on the computer and go back to bed. What can I say, it's not an easy thing being ill, and the lack of understanding sometimes really makes life trying.

Recently I've started using the power carts when I go to the grocery store. It's been a good thing, but I still feel eyes on me as people see me walk in and then sit down on these cars. Having my cane at my side still doesn't seem to deter the stares. I remember when I was really little I was watching someone using their wheelchair with a basket attachment in the store and my mom saw me watching and told me not to stare because I could hurt their feelings. I was fascinated with the functionality of the basket on their chair and didn't get the idea of hurting their feelings then, but I so get it now that I deal with it myself.

One of my matrons of honor (I had two) at my wedding has arthritis as well. She was one of the youth leaders when I was a youth in the church we used to attend. As a group we'd go to concerts and amusement parks and I always loved hanging out with her, but would prod her to come along with me to various places in the park, to just walk with me. Sometimes she was a sport and other times she'd wrap on her knees and tell me something along the lines of "Arthritis, need rest" at least that's all I'd remember. And now that I deal with it myself I feel the need to apologize to her for pushing her as much as I did. Yes, it's good to keep moving, but I'm sure I've made her feel bad about not being able to keep up with a kid (when I was a teen). If I had the understanding I have now, I would have just sat along side her and enjoyed the wonderful conversations we always have when we're together. Dear Liz, I miss you & I'm sorry I didn't just sit with you more.

On to another aspect of this topic. There needs to be real understanding awareness raised around society today. I think one of the biggest ignorance is when people assume that someone is lazy when they use a walker, cane, wheelchair, etc. They think that as long as all limbs are there and useable that any aid is just laziness. It's sad, if only they could see what life feels like with needing these things, maybe they'd think twice before making such a false and hurtful assumption. This issue happened to a teen who recently went to a drive up restaurant and was turned away because she used the handicapped spot. She rightfully has a placard and special drivers license, and yet they turned her away. You can read about it here. It's just a classic example of someone thinking "she looks young and fit, so they must be lazy and lying." And yet this young woman had every right to be there. I don't think it's an issue to boycott over, which is why I'm leaving the link to mention where this happened. I think the issue is with the employees who are ignorant. I do however think they have a case to make to corporate that those employees need to have some training or disciplinary action done. It's just sad that in a day and age where we're supposed to be so aware and accepting of so many things that when someone can prove their disability they are still denied the proper service they deserve.

Imagine Spot 2

2009-06-15T15:40:00.001-07:00

Quick little clip that shows a broad spectrum of people who were adopted.

Invisible Illness Week Facts to Tweet About

2009-06-05T18:26:00.000-07:00

This link takes you to a list of affirmations and stats about chronic pain and chronic illness. I've tweeted a few of them (posted them on my twitter account) but haven't done all of them, so I thought I'd post them here real quick.

RT @invisibleillwk #iiwk09 Fact #1 Nearly 1 in 2 Americans (133 million) has a chronic condition. Not U? It’s someone U luv! http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #2 About 96% of illnesses are invisible. No visible signs and no assistive device used. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #3 The significance of one’s faith has shown to help one handle a stressful medical event better http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #4 Sadly, the divorce rate among the chronically ill is over 75 percent http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #5 Plp with illness are young! 60% are between the ages of 18 and 64 http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #6 By 2020, about 157 million Americans will be afflicted by chronic illnesses. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #7 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #8 Depression is 15-20% higher for the chronically ill than for the average person. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #9 Sadly, physical illness or uncontrollable physical pain are major factors in up to 70% of suicides. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #10 About one in four adults suffer from a diagnosable mental disorder in a given year. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #11 Invisible illness includes #autism, #bulimia, #migraine pain, #arthritis, #bi-polar disorder #depression. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #12 More plp need pain treatment than those w/ cancer, heart disease, stroke & diabetes combined. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #13 Less than 2 hours is spent on pain management in most medical school curriculum http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #14 Most people prefer illness mgmt advice from health professionals before their spouse http://ow.ly/72fO

RT @invisibleillwk #iiwk09 Fact #15 19 million of plp who are severely disabled do not use a wheelchair, cane, crutches or walker http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #16 4 in 5 health care dollars 78% are spent on people with chronic conditions in USA http://ow.ly/72g4

RT @invisibleillwk #iiwk09 Fact #17 Patients with a deep faith recover faster from depression,even when illness doesn’t improve. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #18 Faith reduces stress, loneliness, pain, & anxiety according to American Cancer Society http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #19 Over half of the chronically ill say the worst thing someone can say is “you look great.” http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #20 34% of respondents said the person closest to them with a chronic illness is a parent. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #21 Most medical residents leave med school believing that 80% patients R addicts seeking drugs. http://ow.ly/72gP

RT @invisibleillwk #iiwk09 Fact #22 Over 75 percent of patients with depression complain of physical pains. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #23 The # of plp in the US 65 > will double in the 25 yrs to 20% of Americans = more illness. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #24 Depression can predispose patients to chronic pain due to chemical imbalance it creates. http://ow.ly/6Otw

RT @invisibleillwk #iiwk09 Fact #25 Faith gives plp w/ health challenges peace of mind & will to live http://ow.ly/6Otw

Reposting: NASA Study Makes 'Amazing' Discovery: Sun Heats Earth

2009-06-05T14:37:00.000-07:00

Read this: 'NASA Study Makes 'Amazing' Discovery: Sun Heats Earth'

This is great. It's what those of us who are willing to look at the whole picture and are aware that the earth has seasons not just 4 times a year, but of decades and centuries too have already known.

I love that NASA put this out, maybe it will get more press & people's attention. It seems like when Farmer's Almanac has made similar articles it doesn't get the press it deserves.

Man made global warming is nothing more than political fear-mongering!