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.'

Putting a face to who ObamaCare will negatively impact.

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.

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

Maddie has hyperthyroidism.

Our poor cat Maddie has had a rough week. The last several months she's been loosing weight and sleeping more even with still eating and drinking and using the litter-box fine.

Friday she vomited white liquid and I knew something really wasn't right. Kevin bought a box of canned food from Costco and we've been feeding her that, which seems to agree with her stomach better. She did OK during the weekend but on Monday couldn't keep anything down, and her breath and puke smelled really bad.

Monday was very stressful for both Maddie and I because while she was sick the power and internet were out, and the first time she puked she got it all over herself so I had to give her a bath in the sink, in a dark bathroom. The picture is of her all toweled up after her bath. You can tell she's unhappy, but trusting I'm doing right by her. The second time she puked, she was using her whole body so hard to do it that she choked on it and stopped breathing for a few seconds. I had to grab her and massage her to breathe, it was like the force knocked the wind out of her. I think that's what freaked me out the most and told me this wasn't normal cat regurgitation of hair-balls, but that she was sick and needed the vet.

Monday started out bad for me, with the internet going down, followed an hour or so later with the power going out too. I still don't know why these things happened, but the internet was down most of the day, and the power was out for several hours. We have VOIP for our home phone, so with both being down (heck even when it's just one or the other) I wasn't able to use the home phone. I tried several times to text and call Kevin, but his phone was off so I was growing more frustrated not knowing why I hadn't heard back from him. I finally got so upset after her second round of major puking that I called his number at work to speak to him. He was surprised as he didn't know his phone was off, and agreed that Maddie needed to see the vet. So I immediately called and took her in an hour later.

I took her to the vet and we had several tests of lab work done to find out what's going on. So far the diagnosis is that she has hyperthyroidism. She had a fever while we were there, and was badly dehydrated, so she's on antibiotics now, and was given a large injection of fluids. It seemed they doubled her weight when we were done there! She's perked up some with the fluids and antibiotics, but still needs to be put on medications for her hyperthyroidism. We're trying to figure out how we can pay for her now extra expenses as she'll need these meds for the rest of her life.

She knows I'm taking care of her too. Normally she's pretty aloof, but lately has been following my every move. Mostly hoping I'll keep giving her more food, which she hasn't run out of, but feeling how she does she's concerned that she always have enough. She's currently eating a whole can all by herself everyday! As well as having all the kibble and water she wants available to her.

She's a good cat, and we don't want to give up on her. We want to give her the best life possible, as much as we can. She may be a grouchy girl, but she's ours, we love her, and she's very intelligent, and we respect that about her. We're hoping with these medications that she'll continue to improve and will have more time with us, she deserves that. She's our little girl, and we've had her all of our 9 years of marriage.

Siggy is being trying as he's not getting as much attention as he's used to. So he's doing many naughty things. We have our printer on the very top of the entertainment center so that it's out of the way, and while I was printing an invoice the other day I heard this loud clashing sound. I ran out of the office to the living-room to see what the heck happened and found Siggy on the top of the entertainment center about 6 feet above the ground, trying to steal the printer paper! After getting my picture I had to climb up and pull him down as he wasn't listening about getting down. I was very frustrated. Today he's been a bit better behaved. But I think that's just because we've been letting him in the bedroom while we sleep again, so he doesn't feel so neglected. But we can't do that all the time either. I hope that as she perks back up they will get back to playing together more again and that his behavior will improve.

Right now she's in her bed grooming herself and purring. She seems really content, and that makes me so happy. Since going to the vet she hasn't puked at all, which I know both her and I are very thankful for. Now that she's doing a bit better I need to get the steam cleaner out and clean all the spots in the carpet from Friday and Monday. I'm so thankful I have my own steam cleaner. The only problem for me is actually getting it done. My hips and back are causing me immense pain. And my legs are weak. Stress always adds to my daily arthritis pain & stiffness. Additionally the weather has been changing a lot again, and the barometric shifts really are murder on my joints. Even still I was able to ride my stationary bike for almost 4 miles this week. I think I need to take a break though so this doesn't turn into a major flare. I'm already dealing with a lot of pain while at rest. I have an appointment to see my nurse rheumatologist on the 6th and am trying to tough it out with just Tylenol alone as I've run out of meds before then. I'm using my cane a lot to get around, and really wishing I had already bought a walker as it would be a lot more useful right now. Tomorrow I'm just going to rest. It seems like that's working for Maddie, so maybe I'll have a chance now too.

Injections for arthritis.

No medication out there is free of side effects, and, unfortunately, no disease is free of side effects if left untreated. This is where my doctors and I made the choice that with how rapidly fast my symptoms were growing, that putting me on injections for my arthritis made sense.

I run risks by taking it, but the ability to move again, even if it's not full ability, is a marvelous reward. During the fall I had three months where I was going from one cold to another, and then another. I can't inject during these times because I run the risk of having pneumonia, or another type of bad infection. I have to take every precaution when I get cuts to avoid bad infections, and I have a special prescription for antibiotic ointment. So far the ointment has worked well, as does keeping the house stocked with oranges. The three month cold worried me, mostly because I couldn't inject though. While the colds were bothersome, they were just colds. The effects I was feeling from arthritis though were at times beyond bearable. About once a week I wasn't able to get out of bed, and spent much of the time walking with my cane. A few weeks ago I was able to inject again, and thankfully I haven't gotten any more colds. I had a small little infected sore above my ear, but just with some Bert's Bee's remedy, I've cleared that up and it's healing. I'm very thankful. I just got my second injection tonight, and looking back to a few weeks ago, I can definitely tell the difference. My back still wrenches up, and my hips still click, but I can move freer and my periods of sever inflammation are a lot less. Controlling the inflammation is key, because the inflammation is what does joint and tissue damage. I need to get it under control more because I've lost a lot of muscle strength from the inflammation eating away my muscles. But it's a balancing act because if I work too hard I can make the inflammation worse instead of better, that's what my physical therapist was telling me. R.A. is different then just working out a damaged area, it's an ongoing thing.

Today was the first time in a long time that going grocery shopping didn't totally wipe me out. I did pretty well! I was very pleased, especially considering how much of a task it was just a few weeks ago. I know it might not always be this way, but I'll take the benefit as long as I can.

Now my goal is to get more of the home in shape, to start pricing fencing, get some home maintenance things done and some other things to prepare for adoption. Fencing the property looks like it'll need to be top priority, safety measure from the state and all. I look forward to this being done, but I'm not sure just how soon it can happen yet.

I almost feel antsy, because of my ability to move better again. My strength and energy still is not like I was when I didn't have arthritis, but it's better than laying in bed wanting to will my body to move and not being able to. I'm anxious to get things done around the home. I feel like I'm ready for some Spring Cleaning, and it's only just the start of January. This is a very good thing. I need a head-start. I need to get stuff done while it's cold so that when it gets too hot to think straight I'll be able to sit and read a book and not feel so bad about things. 5 months, I might be able to do that, so long as I keep staying cold free and can continue to inject!

Finances, housework, stuff.

Due to the high prices of gas, and groceries, and because our funds for prescriptions ran out, we made the decision a couple weeks ago that we won't be able to give Christmas gifts this year. This greatly saddens me. I'm not even sure we'll be able to send cards or letters, which I hope we will, but it's very likely that this will be another year where our Christmas letter is simply posted here, and only people we see in person will get cards.

Recently my dear friend Mica and her family moved so her honey could go to seminary. As they left they gave us all of their perishable groceries! This was an amazing blessing! We weren't sure how we were going to buy food this month, we're still paying off my birthday weekend and so we weren't sure how we'd eat. I'm so grateful for their giving! I'm sad to see such loving friends leave, but what a blessing the timing is here.

The blessings keep coming too! We got amazing news today! Kevin got a raise! And it's a pretty good one too! We're thinking all it will probably do is to dig us out, not to really get us ahead. But hopefully we're just being conservative. We're still buried under the financial burdens of having lived in California much longer than we should have. We simply over-extended ourselves there and have been struggling ever since. We've cut back on things I didn't even think we could have. I'm not looking for a pity party. I'm actually writing to share our good news about his raise, I'm just hoping that this will meet our needs. Finances have been so overwhelming... Life is very difficult for me because of my mobility issues. I'm not so disabled as to go on disability, but I am enough disabled that I couldn't keep a job without being sick, sore, and tired the majority of the time. I'm so grateful that Kevin got this raise, it at least takes away my need to have to look for something when I can't really do that anyway. It continues to afford me the time to go to all these doctors appointments I need to.

Hopefully soon we'll be able to pay off some of these prescription bills, credit card debt, give more to church, resume giving to World Vision, better complete our shopping lists, and maybe start taking care of some things around the house. But what scares me is the idea that if we start taking care of these things that this increase will just seem like nothing all over again. That we'll still be in worn out clothes, unable to enjoy movies, and travels and such. There is so much we haven't been taking care of, that we really should. It's quite overwhelming.

We still need to fence our property, something we MUST do before we start the home-study for adoption. And we need to repair a piece of wall in the kitchen that was damaged when we had a water heater issue (that a deacon from our church fixed, which was a huge blessing!) that caused standing water in the water heater closet. And we have to paint the kitchen still. I have a few gallons of paint we bought with the money grandma gave us to repair after my kitchen fire last year, but without getting the wall fixed yet, or the kitchen cleaned enough and mobility issues, the paint still sits in the laundry room. I really need to just throw a pizza/work party for the kids from church, but I'm so bad about asking for and accepting help.

In a couple months my parents will visit, I'm hoping then that my dad can help me get the linen closet built. But I don't want to burden him while he's on vacation. He already does so much for grandma while he's home, and his job is physical too, I know he deserves a rest. We'll see how things pan out. But this is another thing I've put off because of finances, and I know our lives would improve if we had such a closet. Simple things, silly things, these things bug me. So do the white walls in every room that I wish could be color, and the carpets that need to be cleaned... I just look around and see so much that if I were more able bodied I'd just take care of myself, but with limitations probably need to pay someone else to do.

At the moment I'm not sure where my family will stay while here, every room is a mess. I keep house, but with how limited I am, you'd never know it. I don't post pictures of home because I don't ever want anyone to think I'm fine with the way things look here, or that I am OK with this. I'm not. The cat's playing never help, they knock stuff over causing more work, and quite often I leave things because bending over just is too much pain. I am amazingly blessed with several ladies from church who are willing and able to come over and help. Two are coming over on Friday. I am beyond humbled by this because I truly don't want to have to ask for help, but there is no way I can do this on my own. And yes Kevin helps, but he also works full time, so there isn't that much time he has to help much, and he needs his rest while home. His birthday is November 15th and I'd love to give him a clean home for his birthday, but as fall starts I'm already noticing an increase in mini-flair ups. I missed church twice in the last three weeks. I have been beyond tired because of physical therapy, and I'm so happy it's over now. Hopefully I can keep active enough to not loose the benefits, but cut back enough to not be so tired all the time. And to get more done around home, but I also have this laundry list of medical appointments I've been needing to make all summer, but have been putting off so I'd have the time for the PT appointments. I just need to keep praying that God will help me get this all done.

I guess what all this babbling comes down to is that life has been very taxing and overwhelming lately. Today's blessing is such amazing and good news! I just hope all these facts of life aren't so much bigger as to make it not that much of a deal. That's what we are both really afraid of. I am so thankful and blessed by this news, and by my friends from church. It just amazes me that I'm burdened so much by blessings. I think God is really working on me here, it's hard, humbling and strange, but I do see things getting better. Hopefully soon life won't feel so stuck.

Praise the lord for raises and caring friends!

Yup infertility sucks

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

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

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

Causes more harm than good!

In the comments section of my post 'Pain causing pain, considering Cymbalta', I got a comment from an anonymous Jennifer who went on to LIST out to me all her 'advice' on what I 'need' to do after she very casually saw just that one and only post of mine.

What bothers me is she glosses over the reality of my diseases by saying "I have to say, I feel terrible for what you are going through. It sounds horrible." And then goes on to list out unsolicited, unknowledgeable and misguided advice.

This person went on to tell me that medicine is bad, and that I'm wallowing in my issues. First of all so what if I wallow!? And I totally don't see it that way... I know I'm sharing a lot, candidly, but this is the reality of infertility and disability - I'm not going to ignore my issues, and I'm going to honestly share what is happening with me, so if it comes off as wallowing that is their problem. As I have said many times, "This life is full of happy and sad, good and evil, right and wrong... that being said in our lives we have to deal with various things, and if we don't deal with them they become bigger problems the more we ignore them! I refuse to ignore my problems of arthritis, depression, and infertility, and I will continue to share what I learn and what I go through because it's good for other humans to understand that this life has suffering, that some suffer more than others, and that there are many ways of taking care of ones-self." SO I'm sorry if this honesty makes someone feel bad about themselves, or bad to see the reality of what others deal with, but telling me the things to do that she did was completely not helpful, but was offensive and hurtful!

I was told to not pursue Cymbalta (even though I have had medically diagnosed and treated depression for years.) but to pursue Chiropractic care, AND told that it should be able to address my infertility as well. Both depression and infertility are complex medical issues. While there are many benefits with Chiropractic care for many issues, this is not appropriate here. Especially with Ankylosing Spondylitis! Chiropractic care is too stressful on the body. Fusion happens in a person with A.S. The spine becomes one large bone and inflexible. If an alignment were to be tried the back can be broken! And that is a huge issue! I take great offense in misguided information from someone who claims to know this is what I need and yet truly has no idea what is even happening! Or who doesn't even know me and my diseases!

Her advice also included that I read a particular self help book. Looking on Amazon I read many comments ripping apart this book. Between the ratings and the description from the book itself it is something I would never pick up. It is a new age book. I am a Christian, and I refuse to take in something that would contradict my faith. The recommended book is "The Secret"

My faith is a core reason I see to share these trials I live with... Day in and day out may be hard, but my hope is found in Christ, I know someday this life will end and I'll have a new heavenly body and life. That these things that matter in this world will pass away, and that this new life will have much greater meaning! I find this a wonderful truth and want to share it with all. Becoming a Christian won't make this life all of a sudden seem like a cake walk, but it does give one hope. I think to someone who doesn't understand this they can't see just how important this is, but to someone looking for hope beyond their earthly burdens I would hope that sharing my experiences and yet still keeping my heart focused on Christ can be a witness. For that to happen though, the reader would have to look at the whole picture, which goes back to how misguided the person is to try and tell me they know what needs to be done to treat my issues simply from reading one post!

Going back to the book that was recommended to me... something that I read in the reviews on Amazon that stood out was the following paragraph;

All you have to do is just ask (oh, and believe, and feel) for the thing you want and lo and behold, thou shalt have it! I quote: "Make a command to the Universe. Let the Universe know what you want. The universe responds to your thoughts." Another one: "The Universe will start to rearrange itself to make it happen for you." Really? I didn't know the entire universe cared so much about me!

Now, this is someone else's quote from a book I haven't read, so I'm taking there word for it, but what first came to mind is how this is taken from Scripture, and twisted to fit these authors feel good fluff. This can be seen in Matthew 17:19-20 (English Standard Version)

Then the disciples came to Jesus privately and said, "Why could we not cast it out?" He said to them, "Because of your little faith. For truly, I say to you, if you have faith like a grain of mustard seed, you will say to this mountain, 'Move from here to there,' and it will move, and nothing will be impossible for you."

It sadness me that this book has partial truths in it, but misses the real reason life can be better. Life is a gift from God, and if I'm wealthy that's a gift, if I'm healthy that's a gift, if I have children to love and raise that's a gift, if I don't have these things, it's not something I should be demanding from the universe. I am perplexed why this is my journey, but I trust God and I do see Him working in my life, so while I may be uncomfortable I know this is where I am to be. I do have blessings that are God given that I am so incredibly grateful for! I have an amazing husband who continues to love me and care for me, I have friends who are truly kind and caring, and medical professionals who have my well being at the center of their care. For these blessings I am blessed!

The reality is that in this imperfect world people will have disease, people will have suffering, people will have needs. Christ said this Himself.

The poor you always will have (Matthew 26:11)

and in the Beatitudes...

Matthew 5:1-12

Seeing the crowds, he went up on the mountain, and when he sat down, his disciples came to him.

And he opened his mouth and taught them, saying:

"Blessed are the poor in spirit, for theirs is the kingdom of heaven."

"Blessed are those who mourn, for they shall be comforted."

"Blessed are the meek, for they shall inherit the earth."

"Blessed are those who hunger and thirst for righteousness, for they shall be satisfied."

"Blessed are the merciful, for they shall receive mercy."

"Blessed are the pure in heart, for they shall see God."

"Blessed are the peacemakers, for they shall be called sons of God."

"Blessed are those who are persecuted for righteousness’ sake, for theirs is the kingdom of heaven."

"Blessed are you when others revile you and persecute you and utter all kinds of evil against you falsely on my account. Rejoice and be glad, for your reward is great in heaven, for so they persecuted the prophets who were before you."

Who are those who mourn? Who are those who are meek? Who are those who are poor in spirit? Are these not those who are burdened with this world? Doesn't this sermon of Christ's show that after this life there is something so much more!? So I feel the need to let others know they're not alone, that yes it's a dark and painful place to be to live with infertility, or depression, or chronic pain, or something else, but I'm not going to sugar coat things because I don't want anyone to think that these issues are any less than what they are.

I find the anonymous comment very shallow, and it makes an effort to sweep me under the rug. In my other post about what my friend Anne shared with me, I shared what she said because of the truth in it. In this day and age people are too uncomfortable if they have to think about what others deal with, and how much of a help or friend is that? It isn't, it just doesn't help! That particular post is just before the one I'm talking about now, so it could have been read together and taken into consideration together and it wasn't. Again I quote what Anne said...

We live in a society that has a false sense of happiness - that is not the only valid emotion. And I personally think that it's the uncomfortable, awkward things that can help us grow. Society and The Church (!!!!) need to be aware of what goes on in the heart of an infertile young woman. A young married couple having kids is the accepted norm, and there are so many unbiblical and (I think) evil assumptions about IF in the church. The only way we will find the support we need and be able to reach out to others experiencing the same heartbreak is to share our story, share the depths and truth of the grief we encounter.

I see this as applying to all suffering, and is why I'm as honest as I am in everything I share here. I don't have many regular readers, and I can understand that, because this isn't a happy all the time place. But to those who do read more than one post my hope is that you don't see just the negative, or just the happy, but the journey as a whole. To see this story for what it is, ups and downs, victories and losses, blessings and needs. And that Christ is who my hope is placed in.

If someone wanted to truly help me it would look like this;

Helping around my house, helping to pay medical needs, supporting my participation in the Arthritis walk, praying along with me and others, listening and being a caring friend.

I do have people who do some of these things, for them I am truly blessed and grateful, but to someone who wants to give me advice on something they know nothing about, I share the following buttons (because I have nothing more I can say)...

Pain causing pain - considering Cymbalta.

Right now I'm dealing with my pain (lack of management) causing my depression to spiral deeper and the two keep feeding off of each other. On Sunday I couldn't get out of bed. My sleep has been completely disrupted, getting a few hours here and there, any time day or night, and feeling like a zombie the rest of the time. I will make an appointment with my Rheumatologist once I can get past how foggy I am right now. I'm going to ask if I need to add Cymbalta to my medications since I haven't been able to take Prozac in a while and not medicating my depression is starting to take it's toll on me again. The last time I was treating it was last summer while Tony cat was sick and I continued a couple months after he passed away, but eventually the dizzy spells and migraines from it became too much so I just stopped. I know I shouldn't have, that I should have asked a doc to switch me, but I'm so sick of appointments I've just been avoiding some because I feel like going to appointments would become a full time job right now if I did, I'm already out of the house for physical therapy twice a week right now, and that's taxing.

Anyway, from what I keep reading, Cymbalta is the anti-depressive of choice for those with chronic physical pain issues and depression too.

The majority of my pain is in my back these days. I think physical therapy is working well for my hips, but that my back is either getting worse or is more noticeable with the hips not being as much of an issue. The back pain is keeping me from sleep. I feel like someone kicked me in the back and now it's all achey and stiff. Or like I have a lead pipe around my spine. I'm suffering limited balance and limited range of motion and I'm find myself leaning on counters and using my cane more even though my hips are a bit better. (Bursitis anyway, still dealing with Osteoarthritis and labral tears there, that only changes with surgery.)

Because this makes sleeping impossible, the lack of reparative rest makes my head foggy, pain more intense, and depression worst. The following is something I found because I was wondering what, if any, information might be out there in regards to A.S./R.A. and depression. I found that, like a lot of other forms of depression women are effected more than men. Kind of interesting that they could monitor that considering males are diagnosed with A.S. more than women, but according to the Spondylitis Association of America those statistics are changing.

Here is what I read;

Wiley InterScience

Depression has been established as a common reaction to rheumatoid arthritis but has rarely been investigated among people with other forms of arthritis. The present study examined the prevalence and determinants of depressive symptoms in people with ankylosing spondylitis, focusing on gender differences and set in the context of widely held medical views concerning the psychosocial nature of ankylosing spondylitis patients. Results showed that approximately one third of the ankylosing spondylitis patients reported a high level of depressive symptoms and that women reported more depression than men. No evidence was found to support the stereotype of the typical ankylosing spondylitis patient as being less depressed than people with other forms of arthritis. Pain was found to be a major determinant of depression for women, but was of lesser importance for men.

Depression in Women - Spondylitis Association of America;

People with chronic diseases are more prone to develop major depression. In fact, a British study showed that 37% of people with spondylitis suffer at least one bout of depression during a lifetime. Fortunately, more than 80 percent of people with depression can be treated successfully with medication, psychotherapy or a combination of both.

Women experience depression at roughly twice the rate of men, although it is an illness that affects both sexes. Contrary to popular belief, depression is not a "normal part of being a woman" nor is it a "female weakness". Researchers continue to explore how issues unique to women may contribute to the increased rate of depression. Such issues include reproductive, hormonal, genetic or other biological factors; abuse and oppression; interpersonal factors; and certain psychological and personality characteristics.

About one in every eight women can expect to develop clinical depression during their lifetime. Depression occurs most frequently in women aged 25 to 44 (Note: when a women is most likely to begin feeling the symptoms of spondylitis), and depression in women is misdiagnosed approximately 30 to 50 percent of the time.

So all this being said, I'm trying to get out of my fog. Finish up my physical therapy in the next couple weeks, and make an appointment with my Rheumatologist to find out what my next step is with physical therapy, and to see about adding Cymbalta. Most likely I'll need a new script for physical therapy to this time work on my back. I also need to remember to get a new referral for an orthopedic surgeon. I had one in my purse, but I took it out when we went to California because I didn't want to loose it, and here I've gone and lost it! I've looked all over and just haven't been able to find it! A lot feels chaotic these days. So disorganized and frustrating. I'm hoping things will get better soon though.

I'm really just making this post to remind myself of all these things, to keep track of the information I've found and to remind me to share it at my next appointment. I'll be OK, I've pulled out of issues like this before.

More AS facts that are probably just for me.

So I was poking around on about.com regarding muscle twitches and spasms. I slept super hard this morning and now have a knot the size of a mandarin orange in my right side (the side I slept on). I'm sure this is more of my auto-immune stuff, so I was poking around and found that About has an Ankylosing Spondylitis screening quiz. I decided to take it, and here are my results...



Now, because of my research on AS I know there were a couple things that I checked contrary that knocked down my score, but doesn't mean I don't have it. Like one of the questions was am I male or female, and because I'm female it knocked the rating down, but the reasoning there is because men are affected more than women by a ratio in excess of 2:1
And the other one that knocked my score down was that I don't have lots of eye inflammation or bowl issues. But those two are only a fraction of AS patients. Not all with AS have those, and for many it's an issue that arises as the disease continues untreated. (From what I understand in all I've read.) So just because those things aren't issues I deal with doesn't mean that AS isn't the right diagnosis. What all this does mean is statistically it would seem that a diagnosis of AS is appropriate. That treating my symptoms as such makes sense (I guess I'll crack open my Tai Chi DVD...) and that I should probably make sure my Orthopedist and physical therapists understand this issue about me.

I find the internet a real blessing. It gives me tools and resources to seek and bring questions and test results with me when I do go to my doctor visits. I've said it before and I still think it's true, that AS actually is a relief of a diagnosis to me because if my spine does fuse someday, yes my mobility will suffer, but my actual pain will greatly decrease, and that would be such a huge blessing.

I really hope that when I make posts like this one that it doesn't come off as complaining, but as informing. I know I've had this for years. It was debilitating when I worked retail, and to know now ways to rest and stretch and exercise properly has made my life so much better. Before I was at such a loss. So I share these things hopefully to raise awareness. I mean before I started really piecing this all together I had no idea that there was a type of arthritis like this. Sometimes it makes me feel like it all makes sense now, that a lot of my pain issues were not things I did to myself to cause them, but things I just didn't know because I didn't know what I was dealing with something that not everyone knows about. So I feel it important to let others know what I'm dealing with, to give validity to my disability and to let others know what to look for if they're dealing with such things as well.

So that's all for now I guess. This last week was rough sleep wise, so I never was really with it enough to make my phone calls for my appointments. I must be done Monday. I'm pretty sure I'll be able to, my sleeping is starting to even back out to 8 hours per night, or morning.

I'm still not certain if my injections are helping my AS symptoms or not, but they are helping my RA symptoms, I've actually been writing recipe cards by hand and while I have to take lots of breaks at least it's legible, so I'm happy.

Three titles could go here.

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



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

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

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

OK, to recap...

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

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

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

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

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

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

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

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

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

I censored myself.

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

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

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

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

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

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

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

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.

Hallelujah!

Praise the Lord! Finally after about a week of laying around and peeing and squirming and popping pain pills I'm feeling better.
I spent so much time on-line reading countless sites furthering my belief that what I dealt with was a ruptured cyst. Had I not had leftover pills from my wisdom tooth extractions I probably would have paid the big bucks to go to the E.R. without health insurance. Fortunately we finally got all the papers in order to get our insurance. As soon as we get our cards I'm off to the medical center in hopes of useful referrals.

PCOS/IR

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

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