sicky fibro flare

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.

Faith and depression

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.'

Just a quick update.

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)

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

Invisible Illness Week Facts to Tweet About

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

You're lying by not complaining!

What is wrong with you!? No, really? Are you wearing a happy face mask, but inside feeling like no one could care two cents about you? Who's fault is it really if you pretend for others that everything is OK when you're hurting so deep and wishing someone would listen? If you don't open up & speak up you can't fairly expect anyone to know what you are dealing with. Unless you happen to know of some legitimate mind readers or something (I jest.)

My house is a mess. I'm not upset about this (terribly) and it's not going to hurt me. I'm not telling anyone to do anything about it. And I'm not making excuses for myself by saying this. It is however at the forefront of my thinking. I'm a housewife with chronic illness. Most days I see everything around me that needs to be done and plan things out in my head, but actually making a dent in the list? Nope, and if I do, I pay for it the next day. This is the reality of my life. If you don't know me, you can just stop reading now. BUT chances are you do know someone with chronic illness so maybe it's worth it for you to continuing reading on.

I want to know where the idea that Christians aren't to complain comes from? I will whole heartedly agree that the manner in which it is said, and the heart of the matter is of high importance, but where does the idea of this false happy mask fit with a truthful heart? How then, are we to know what each-others burdens are to bear them for each-other? I can stay holed away in my home for weeks on end, could be playing guitar hero all day ignoring the world (sinful defiance), or I could be laying in bed in pain (needy). How would anyone know unless they ask? And how can I be truthful unless I honestly say when I'm struggling?

My wonderful husband set up my foot spa for me today. It wasn't a matter of seeking luxury, but a matter of getting the cramp in my foot to stop long enough for me to stand at least a little bit. We struggled to find the salt and he carried the water to the couch, bringing me a towel and flip flops to wear afterwards too. Then when I was done he took the spa to the bath to dump it out. Do you care anything about this? Well, maybe it sounds like complaining (and lots of needless details) to some, or maybe to others it shows just how sweet my dear husband is, and how grateful I am for the little ways he loves & cares for me. My feet still hurt. But my heart is full with love because of the compassion my husband shows me. Living out our marriage vows to love in sickness and in health is something he has shown great integrity about. I am so blessed by this continually. How do you know this? Because I have a cramp in my foot.

At church I was TIRED! I got maybe 4 hours of sleep. I wish it was for something fun like reading too late, or playing video games or watching movies. But it was from washing dishes and running errands, and then tossing and turning all night from pain. Wishing I could sleep, knowing that in the morning I'd be tired. Why is this important? Because when I get this tired I know I'm not as good of a friend. I know I'm not as interactive, social, or listening. You could tell me wonderful stories, but I won't remember simply because the sleep debt robs me of brain cells as my body is in standby mode to power down. And that's what happened today. I sat with wonderful friends, didn't really say much of anything, and then went home. I know we talked, but I can't remember much. And I feel so bad for that. These people deserve better than that. If I could change something about my sleep issues I would in a heart beat, and all because I want to be a better friend. I don't want people to read that and think my point is about the sleep issue, but about why I might not recall something that a good friend would, and I could be that person for them. My hope would be that by sharing this I can promote understanding.

I have this huge need and drive to be truthful, honest, and straightforward. If I sense someone asking me how I'm doing and they look a little concerned I tend to tell them. Maybe I shouldn't. But isn't omission in itself a type of lie? If I'm not fine, but put on a happy face and not let anyone else think other wise, am I not in-fact lying? Which is worse? To be seen as needy or to commit a sin of false testimony?

What does this mean to others? I DO want to know how you are when life sucks, don't hide it. Maybe there are ways I CAN help, or know someone who can! And I bet with talking it out we can come up with the blessings in it if we pray and dig. When you have something sad, don't feel like there is no one you can talk to. All that will do is make matters worse.

The reason I share on here what I do is in hopes that others will be made aware of what life is like dealing with this chronic illness stuff. In some ways I sometimes still have to teach myself that life is different. I had energy and did all sorts of stuff yesterday, and now everything is all out of whack again today. If I'd just remember to pace myself I wouldn't feel like I have the flu right now. And I'm not sick with anything contagious, just that my disease activity is, well, active. I over did it. My body is inflamed, and it's letting me know in the way my body likes to communicate the matter, pain. This is hard to describe because it sounds like weak muscles or the first couple days after a new workout program. The problem is I do exercise, always have, but the way a disease like RA works is sometimes it robs me of strength and other days I feel fine and capable. One day a simple task is no problem, the next day putting on shoes feels like an olympic event. As I live through it, I wish sometimes that I had learned from someone what life is like dealing with all this before hand. Before I had to start taking stock of what all I put my energies to. So I wouldn't feel so blindsided by some of it now that I'm dealing with it. Not that I'd ever wish chronic illness on anyone, but if it is something that must enter the life of someone I know, I'd hate for them to feel like they had no idea what any of this is like. And in some ways a lot is stuff that only someone who lives it can know.

It's kind of like this. I've never given birth, so I can't assume to know what carrying a child and giving birth is like. But I've heard so many stories and seen so many pregnant ladies over the course of my life. If I were to someday become pregnant I think there are some things I'd know ahead of time as a result. And I'd be grateful to all the ladies before me who taught me what it was like dealing with the months they were pregnant. And the things they went through bringing their children into the world. But had no one told me anything, and I did give birth, I think it'd be safe to say I'd probably be a bit dismayed that no one ever told me anything about what it was like. I'm sure there would be things I'd be going through that would make me think, "Someone should tell others what this is like!" And that's all the reason I mention things sometimes. Honesty and education.

Here's hoping my fellow chronic illness friends have a pain free day, and if they can't, that they can still see some reason for hope beyond it.

Another voice of chronic pain

Today I'm sitting in my PJ's at the computer yet again. I'm mad at my weak body because I was trying to make plans with a friend to go down to Olympia for a political protest. My body has other plans. Apparently sleep is ruling my life again, get it while I can, and need lots of it.

I follow a blog of another person with a different type of chronic pain and illness, but who voices many of the same frustrations that are universal for all of us who deal with this.

The post from yesterday is something I thought I'd share. You can read it all here. But what I thought was particularly important were the last few lines. Having a diagnosis and plan of medical attack to treat it is much more important to patients than some medical professionals may realize.

"I can still feel the relief deep within my soul. It was then that I finally accepted for the most part my sickness. I still have my moments of depression, and anger, but I’ve learned to look for the positive things in my life. A simple smile and puppy dog kisses are worth a million dollars to me. You never really appreciate the small things until you have your life turned upside down from a chronic illness. I have said to a lot of people appreciate your health because you never know when the rug of health will be pulled out from underneath your feet."

A couple months ago I wrote in my facebook about how frustrated I was that I still don't have a formal diagnosis after over three years of seeing doctors for what I deal with. I'm diagnosed with RA, but AS is still only speculated, not diagnosed (even though there are mounds of tests and symptom journals to prove this.) When I wrote about this a good friend rightfully replied that going this long without an answer is just insane, if it was something life threatening their patient would be dead! He's so right, and I am thankful that this is "just an auto-immune disorder" and not something life threatening, but even still. Having a diagnosis does make a huge difference. This friend is currently studying to be an EMT. I'm very proud of him for this as I know at least one more person getting into the medical field will have the right frame of mind when it comes to helping people.

I anxiously await next friday. That's when I go back to my nurse to hear the results of my recent MRI. I'm very interested in knowing the results as something from it prompted the Rheumatology clinic to reschedule my follow-up appointment 3 weeks sooner that what had been originally planned. I'm not really fearing that it's going to show anything scary. Mostly I'm assuming that my scans do in-fact show spinal fusion and that this is why my back pain has been as severe as it has been lately.

Well, I really do hope that others will read the post I'm referring to in this one. The only thing I'd add to my own version of this is that my faith is of great importance to me. Without it I wouldn't see much reason in living day in and day out through this. I want others to know that with Christ I have hope, and others with chronic pain and illness can have hope too. It can feel like our symptoms rule us sometimes. But with each day things can improve just as much as they can stay the same.

Keeping my hope in Christ, while livin' in my PJ's.
Cryss

This boy amazes me!

4-Year-Old Boy Saves Mom With 911 Call

THORNTON, Colo. -- A 4-year-old boy was honored Tuesday for saving his mother's life by calling 911 when she collapsed while making him lunch.
Tapes released Tuesday show Thomas "TJ" Roller calling 911 on Feb. 18 and telling the dispatcher, "My Mommy's sick. Can you please come over here? ... Can you pick her up?"

You can hear the phone call here, and I'll tell you, reading the story as well as hearing this little child save his mothers life truly touched me! The four year old boy knows how to use 911 and heard and understood when his mom taught him about it. He knows too that his mommy has a chronic illness, epilepsy, and that when she is sick she needs the people from 911 to send help. I'm truly amazed at how level-headed this child was through the call and listening brought tears to my eyes. I don't cry easy.

I think it felt really real to me as my God-son is the same age as this child, and his mom has epilepsy as well. I just was thinking that could be my own family, and that really made me feel proud for that boy.

There are so many times when tragedy happens from 911 callers thinking some child is misdialing, or playing a prank. I think honor is earned for the 911 operator too who drew out information from the child when it could have been very easy to dismiss a young child. He took him seriously and did his job well. Both guys deserve honor for saving her life.

This story is truly a blessing all around. You can read about it here, and you can read more here at the Denver Post

Of pot roast and pot pies.

Living with chronic illness means that there are a lot of times when we eat prepared meals. It's not something I'm proud of, but sometimes I need a little help from the grocery store, the nights I'm not well enough to stand in the kitchen and cook.

I always make way more than we need each time I do cook so we can have leftovers, and I try to make things we won't get tired of or that I could quickly adapt into something else later.

Anyway, so last night, the highlight of my so unproductive week long flair up, was making pot roast. It wasn't the greatest, and I certainly noted a few things to do different next time. Didn't matter to the Hubster... He devoured his entire portion and praised me for it most of the evening. Even willing to have it as seconds tonight. So tonight I made us pot-pies to go with our pot roast. By 'make' I mean I thawed out and baked some brand name pre-made ones. Now, mind you, we've had these before, but normally as a snack, not eating them with something else. As we ate, we wondered how we ever ate these before! What was it that was in these that made them so completely bland, and the roast I made so flavorful. It felt like a magic trick of the taste-buds. I got to thinking, hey, I'm not that bad of a cook. Really I know I'm not, but I'm trying to remain humble.

Needless to say, I'm thinking about buying more freezer containers and making even more meals ahead on my good days, this is just pathetic. It was strange too to recall times when these little pot-pies have tasted so good and how disappointing they were tonight. It was also quite shocking to see that this particular brand has now taken to supplementing the meat with soy... no wonder the meat tasted gross and was so un-naturally soft. We agreed that Marie Calendar's is probably the only pot pies we like anymore... and even still, we probably should have me make home-made stuff ahead of time, as much as possible from now on.

This is an honor and a frustration though. I pride myself in becoming as best of a cook as I possibly can, so I'm always happy when I hear my food does please and satisfy, but as someone who most days doesn't have the energy I need to get it all done this also becomes quite a chore. I want to make us the food that is best for us, but if I'm too sick to sit or stand at the stove what do I do? And yes, I sit... I've bought a few different bar stools at different heights and it's a definite help with a lot of meals. Realistically though this isn't always a help, and I need something more.

Recently I've made some friends on line who also have Ankylosing Spondylitis and I was talking with one of them on-line last night, and she convinced me I need to invest in a walker. She was saying it's the best things she's done for herself. Believe me, it's something I've seriously considered quite a bit this last year. If it's something that helps keep me going on the bad days than that's a good thing, I think. There is now said walker on my amazon.com wish-list.

One of the hardest parts about chronic pain is that there are bad days, worst than bad days, and OK days too. And a lot of times people look at someone with a chronic pain illness and think well, their good days are how they are, and they just have to push harder on the bad days, and really that you've just given up. First of all, that outlook causes emotional pain. Daily life is such an ordeal with these illnesses, I know all my friends with chronic pain illness, and myself included, would give darn near anything to feel as strong and healthy as we once did. It does us no good to simply act as if we're just lacking a needed push. It makes us feel misunderstood, pained, and frustrated. Believe you me, if this was a matter of willpower, it'd be a different story.

The blessings of networking with others on-line & sharing these frustrations is that as we write, we share ways of sharing, giving perspective, and maybe, hopefully a new angle to share with others how our life is different.

I want my healthy friends and family to read this post by a fellow A.S. sufferer because as I read it I kept thinking that what she was writing was a cliff-notes version of my blog, and maybe hearing her share her words could give you better insight into my life. Yes, it's from her perspective of this disease, but I didn't read anything that isn't what I'd say, or have said.

This road is tough, and I need love and support from those around me as a result.

I need to honestly say that I'd love and appreciate meals brought over, this time of year especially. Don't break your bank, but home made, as opposed to pre-made is so much better, and I hate when we settle. I don't want to be a burden on anyone's grocery budget though.

Well, I need to start heading to bed. I've been sleeping about 11 hours on average lately, and I have women's fellowship tomorrow and don't want to miss it. At this rate I'm looking at taking a shower after I log off, crawling into bed, and when I roll out of bed tomorrow head on out to the meeting. It's at 1:00 PM. Now before you say, "Oh, I wish I could sleep like that!" Please know this is no luxury! I'm not getting rest at all these days, and much of that time is spent laying in bed praying the pain will go away enough to sleep well, only to dream about the pain, and wake up not rested. I hope tomorrow will be better, but I have to look at realistically how this week has been so far.

Good night blog friends, and blog readers. For now, I try to sleep.

Help! Or complaining about life vs. explaining about issues.

(Update at bottom of post.)
The following seemed fitting that I read it today on a day were I napped as much as I was awake, am feeling agitated about everything, gritting my teeth from back pain, and feeling bad that I haven't blogged in several days, and feeling like it means something bad about me that I can't think of anything fun to do or blog about when I feel this low.

I'm never one to want help, or to want to talk when I don't feel good. I'll just say I'm OK and act invisible when I feel like this. The times I have shared how I truly feel makes me feel disconnected with others and I'm acutely aware of just how many people seem to think I invent this back pain.

If I could give it up and have happy things to blog or talk about I'd give it up in a heart beat. I'm not one who wants to feel sorry for me, or looking for attention, but it does become a burden to deal day in and day out with these things and not tell anyone about it. So then I explode rants on here and probably become the opposite of what I'd hope.

Well, here is the quoted post. I'll reply more after the block quote. (and the link for this post is at the end.)

Most people don’t want to be around a chronic complainer. You know the one that shows up at the family picnic. You see her coming and everyone starts disappearing, but wait you couldn’t get away from dear old Aunt Bertha. So you endure the conversation, wondering when she’ll ever quit whining about Uncle Harold’s snoring and Aunt Beth’s teeth. You sit there for the 30 minutes wondering when you will find your out.

While writing this it got me to thinking, where do I rank on the complainer score sheet? Yeah, it’s hard not to complain when life seems to suck when you’re in a lupus flare, and the pain never seems to end. You wake up and if its not one thing hurting it’s another new symptom.

I’m challenging myself not to complain as much about living with lupus and pain, even if it does suck. After all everyone one around me knows I have lupus. It’s not like you can’t figure out when I’m in pain. I’m not very good at hiding it, although I have tried to hide it. I won’t say that I will not complain about living with lupus by no means.

Here’s my thinking, if I don’t complain as much, maybe I won’t be constantly reminded of how much I hate lupus. Yeah, it’s given me some positives, but the negative ones outweigh the positive ones. (that’s another post-tba)

So I’m going to ask you to try this test:

Find yourself a pen and paper and write down all your complaints for the day.
Look at each one and think how you could possibly reduce the amount of complaining you do in a day. Is the complaint something you could fix? Is the complaint something you have been avoiding doing? (get it done, so you can check it off your list).

So, the next time you complain about something find something that you can compliment. You see the compliment is good for the receiver and for the giver. You both should come out feeling O’ so good.

Now, if after reading that you want to go to that blog and leave a comment the link for it is here.

So, after reading that I became aware that there is a BIG difference to someone dealing with chronic issues verses someone who is never happy with those around them. It probably comes off as the same to most people hearing it all, but personally I have a much easier time hearing someone share with me their own personal physical battles, much more then hearing about how mean one family member has been to another or other mean-spirited gossip like that.

These days my good days tend to be filled with catching up. I got behind on so many parts of life after our last trip, and then we had a flu bug, and this last flare up in my back has lasted almost two weeks, with only a break this last saturday (Which was nice because my best friend and I just spent the day hanging out and shopping and having a lovely day.)

I don't want to write about the mountain of dishes in the sink, or how my poor plants are suffering because they aren't in the ground yet, and the many other things around that really need my attention. But the reality of my life is I still haven't been able to get around to them. I want to, I'm not being lazy, and I'm constantly doing something when I am able to move. I need help, but I don't know who to ask, or what to ask, I'm at a loss. And I hate needing help.

I got around to refilling the cat's food, and water dispensers, as well as adding new water to the fish tank, and then I needed to rest. Now, our filtered water does need to be pumped, so there is actually quite a bit of work to it, but it bummed me out because I had hoped to get so much more done before I needed a break again.

I miss the days of only having a handful of doctors appointments a year. These days I have so many. It becomes really tiring. I've had this list of appointments I need to schedule that has grown over the last couple weeks and it just brings me down. I don't want to have to spend any time I leave the house being only doctor appointments, but that's how things are turning out.

Now personally, what I read in blogs and message boards ends up sounding, often a lot like this post. But I've noticed that of those posts I read and relate to they are very often on blogs only for those issues. The name of my blog "Crystal's randomness" reflects this about me, I think, that I never blog about only one thing. I've tried keeping a specific and separate arthritis blog, but it never seems to go anywhere. And then there are times when I try that and I spend days blogging only to make it seem like I've fallen off the blogosphere here. So to me the balance seems to be to really only maintain one blog, and try to keep the tags on the posts separating thing. I can click a tag and poof I'm taken to just my posts on a specific topic, and to me that works just fine. But all this got me to wondering if the other blogs are people who are too afraid to come off as complaining. I mean in a lot of these places, only people in the same boat are reading them, so aside from empathy, I'm not sure what more there is. I'm not saying it's wrong, but it doesn't seem so complete to me. Personally, this blog is obviously personal and a reflection of me. So why not reflect all the aspects of me. If you're reading this far, you probably are a good friend who cares about me, or family who wants to know I'm well. Well, to be honest, well isn't something I've felt long term in quite some time. I have hope that for various reasons down the road things will improve, but right now this is me. So do I hide it under the rug of a different blog, or not share it at all? Or do I suck it up and say "Hey friends, here is what I'm honestly dealing with."?

I know different people would read this all and react in different ways, some might pray for me, others might become over concerned and call and tell me they "know I'll be just fine, and can get over it." I can't tell what's right and what's not. I just know that if I don't say what I'm dealing with I get this sense that people do think I'm lazy, or boring, or avoiding them, and it's just not true. I know some out there will see this as another one of "those" posts and just skim it if they even read it at all. But what can I say, at least I'm putting something out there. Right? I am communicating.

Here is my latest to do list.

It's only the crucial items written down, so it doesn't mention the regular things like dishes and laundry that I mentioned earlier. Right in the middle of my chicken scratch you can read the list of all the appointments I'm supposed to make right now. I really do think I'll try to at least make some of the calls tomorrow. But most days lately, I don't remember to think about it until after office hours have ended for the day.

So all this has me wondering... and maybe this is all this post is really about... how much of "being honest" comes off as just as bad as a mean spirited gossip, and how much is seen as an honest reflection of the trials of a person with chronic illness?

(UPDATE:)
I actually feel rather convicted that a difference needs to be addressed here. So I thought I'd look to scripture a bit. Here are a few things that caught my eye.

Ephesians 4:25-32
25Therefore each of you must put off falsehood and speak truthfully to his neighbor, for we are all members of one body. 26"In your anger do not sin"[d]: Do not let the sun go down while you are still angry, 27and do not give the devil a foothold. 28He who has been stealing must steal no longer, but must work, doing something useful with his own hands, that he may have something to share with those in need.

29Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen. 30And do not grieve the Holy Spirit of God, with whom you were sealed for the day of redemption. 31Get rid of all bitterness, rage and anger, brawling and slander, along with every form of malice. 32Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you.

Ephesians 4:11-13
11It was he who gave some to be apostles, some to be prophets, some to be evangelists, and some to be pastors and teachers, 12to prepare God's people for works of service, so that the body of Christ may be built up 13until we all reach unity in the faith and in the knowledge of the Son of God and become mature, attaining to the whole measure of the fullness of Christ.

So, in response to these scriptures I sense that we are to be aware of the needs of others, and in doing so we need to be able to expect of one another an open honesty of what our needs are. If I keep my needs to myself I stop others from serving me in ways they may be called for, and vice versa. It takes an open and honest two way acceptance that life isn't pretty in order to get past feeling like it's impolite to talk about the bummer parts of life, or to be open enough to listen to others needs, but Christ calls us to this. We are to serve one another. My needs may be physical, someone else's needs may be emotional, but when we come together in open honesty and talk about how things are, we can bond together and help each other out. I think this is the greatest gift a church has to each other, but often one that out of "politeness" is cast aside and not dealt with.

Romans 12:1-2
1Therefore, I urge you, brothers, in view of God's mercy, to offer your bodies as living sacrifices, holy and pleasing to God—this is your spiritual[a] act of worship. 2Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is—his good, pleasing and perfect will.

Romans 12:4-6
4Just as each of us has one body with many members, and these members do not all have the same function, 5so in Christ we who are many form one body, and each member belongs to all the others. 6We have different gifts, according to the grace given us. If a man's gift is prophesying, let him use it in proportion to his[a]faith.

Romans12:9-13
9Love must be sincere. Hate what is evil; cling to what is good. 10Be devoted to one another in brotherly love. Honor one another above yourselves. 11Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. 12Be joyful in hope, patient in affliction, faithful in prayer. 13Share with God's people who are in need. Practice hospitality.

I hope these verses further flesh out some of what I was getting at with this post.

Psalm 34:12-14
12 Whoever of you loves life
and desires to see many good days,

13 keep your tongue from evil
and your lips from speaking lies.

14 Turn from evil and do good;
seek peace and pursue it.

All verses sited are from the NIV (Yes, not typically my first choice of translation, but for this message I think all versions would still ring true.)

1 Peter 4:10
Each one should use whatever gift he has received to serve others, faithfully administering God's grace in its various forms.

A simple primer on Biblical giving.

Since Kevin and I have never had much in the way of finances we've always struggled with the concept of what God requires of us with our giving. We found the more we investigated the more the modern interpretation of giving 10% of all the cash that comes your way is NOT the biblical model for giving. It's not that we don't want to part with our money, we know many churches, ministries, and missionaries we wish we could support more, but when it comes to keeping food in the house verses strict giving (set by man) it ends up becoming a struggle. We've had to learn "new" ways to give. I invest much of my time listening to others and spending time in prayer, being a needed friend and hopefully reflecting God's love. Kevin devotes time to helping others with computer needs and technical support making learning and communicating with others easier and more effective. Sure these things may seem more social than tangible, but these are the gifts we have to give. And I don't think God thinks anything less about it. The issue isn't about giving an exact financial amount, but to give and do in honor of God to glorify Him and grow His Kingdom.

This video makes a very clear description in my opinion. I agrees with much of it and found this message encouraging. I've heard from many that they believe in Christ but because they can't give financially they can't bring themselves to find a church because they always seem to be preaching about giving money. I know for a while Kevin and I knew that struggle personally. I hope for anyone in that situation that you can find a church home that will meet your needs instead of trying to convince you that you need to somehow squeeze water from a rock. Yes, God makes things happen, God gives amazing blessings when we put our faith in Him, but a dangerous misunderstanding I think sometimes becomes an issue. Jesus came to save us from our inability to fulfill our obligations to keeping the law. This doesn't mean all goes out the window, but it does redefine a sense of grace into the equation. We are not going to be cursed for being light with financial giving, but we aren't to give up the action of giving either. The balance of a Bible based church should be just as focused on helping guide people to give as much as it should care for their sick, needy and widows. Please watch the video and let me know what you think.

Check out this video: To Tithe Or Not To Tithe?



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I'd also say 'the church" today in general needs to look at new ways of meeting this. Not all churches fail, you have the places that have at risk youth outreach ministries, food banks, mission trips to build homes and so on. These are the physical ways these things needs of giving can be met in other ways. A church that is wealthy in money but small in action does not seem to be a living ministry.

I'm not writing these things judging any one place. I love the church home I have and see it as a place honoring God. But because of the journey Kevin and I had been on to finally find our church home much of this was brought to our attention. I also feel the need to write along these lines because I know in various ways I DO need help. I need someone to help around the yard and the house, I need understanding people who'll know that if I don't make it to church it's not an issue of being lazy, but being sick in bed. For the most part I have these things, but to me personally it's been a growing experience of learning that some things don't need to be done (like making the bed in the morning), some things can wait (like getting the dishes cleaned), and some things just don't need my time (like keeping up with every and any latest and most popular T.V. shows.) I've learned that not everything that has to be done in this home has to be done by me, that spending time listening to others has more blessings than over-extending myself trying to keep a showroom clean home. Sure, I wish I could feel comfortable having others over, I wish things at home were more relaxing, but I'm also learning that as someone with daily limitations there is only so much I can do, and much of those things I burden myself with really aren't what matters in the bigger picture of things. If I were to die today I would hope the thing that people talked about weren't the dirty floors or the piles of crafts and papers, or laundry, but of a heart focused on God's will and an encouragement to them. I want to be an example of Christ not of Martha. I want people to see that even though I live with daily limitations and ailments that I still praise God for His saving grace and that others can see beyond this world because of my hope I share for my own life beyond this world.

Blessings In Christ,
Crystal

Rest Ministries Chronic Illness Video

This is a broken, and fallen world. Because of that it's no wonder this world is so full of pain in so many ways. Regardless of my faith, my genes, lab results, and symptoms say I will and do deal with chronic pain. So, not using faith as a crutch, but as a frame of reference for what is ultimately true, I hope that a light can shine through me and my suffering. I hope God can use me to help others see that yes, this world is painful, but that's why I want Him to give hope to me and through me. Someday this world will end, and so will my suffering. Right now it seems like a long ways off, but when that day comes, and all time after, it will then seem like a fraction of a second. I have to believe this to be true.

If I focused my prayers on wishing this all away I'd miss the mark, there is something greater than this world. And that message needs to be said. This suffering is only as temporary as this life, so why not live my life the best I can, put my hope in Christ and trust that when Kingdom Comes, I'll have a new life, with a new hope and a higher purpose.

As someone who lives day in and day out with chronic pain and illness I know all too well the loneliness this produces, this place is a refuge and a support. I truly see God shine through this site.

Watch the video to learn more about the site, and to anyone else with chronic pain, illness, or invisible illness, I really recommend this site.

Rest Ministries is a place that is a support and comfort to me.

IN other news, I'll have my MRI scans done at 3:30 on Wednesday.

Latest doctor visits.

I've had several doctors visits lately.

Not too terribly much has changed. My blood sugar was a bit elevated. Still not diabetic, thank God. But I now have a meter to check my blood sugar and my doctor had me increase the amount of Metphormine I take again. It took about a month to get used to the adjustment. But over the summer I've been able to lose 8 pounds so I think it's been a positive thing.

I finally have a Gynecologist again. She's pretty good. She switched me from Loestrine to Yasmin. So far so good, but I've only been on it for a week so far, so it's still a little soon to know how well I'll do with it.

I've also been put back on anti-depressants again, they've been helping a lot! My insomnia is still bad some nights, but both that and mood have improved! I'm grateful. My doctor believes that because there isn't really anything emotionally triggering my depression and insomnia that it is most likely dysthymia due to chronic illness and pain. Makes sense to me, especially when I generally sleep better and have a better mood when I'm feeling better otherwise too. Prior to this I was taking St. John's wart with limited help. I also had to increase my dose to get the amount of relief that has been noticeable now.

All in all I think I have a great group of doctors! I'm still clueless about what my auto-immune disorder is, but the more I read, the more I find that isn't uncommon. Most people seem to be treating things without fully knowing what is going on. Just keeping up with all the lab work.

Speaking of lab work. Between checking my blood sugar and how many labs I've been ordered lately my poor hand has been like a pin cushion! Of course I was blessed to have the active vanes my dad has so if they try to draw blood from my arm the vane always moves and they have to draw from my hand. In all honesty it's gotten to the point where that doesn't hurt as bad, because it generally works the first time.

I've been reading articles from a particular group on myspace recently. The ministry is called Rest Ministries. They say "serving the chronically ill". I'm hoping to review a book that they put out. Regardless of if they let me review the book I still hope to read it. “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend” - I had put it on my Amazon wish list a while ago. (http://www.restministries.org/)

Well, I think that's the gist of everything I needed to update. I'll try to post the links for the groups and profiles I follow on Myspace soon.

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.