This time, you're playing for immunity

Last weekend, the Mr. and I drove up to a neighboring county at 6:00 in the morning, to stand in line and wait for the swine flu vaccine. But ... by the time we got there, the line was already over a mile long. That's right. You read that correctly over a MILE long. So, we didn't even bothering waiting. Which was a good thing. They only had 1700 vaccines at that clinic. And later estimated the line was over 5,000 people long. So ... on Tuesday morning, our very own county had a mass clinic. And we decided to try again. Here's what I wrote about on our personal blog later that day:

This morning, we once again set out to try for the H1N1 vaccine ... this time right here in our very own town. We dropped the baby off at Mimi's house (thanks, Mimi!) and then drove down to the public health clinic place. We got in line at about 5:45 am. It wasFREEZING cold. I told the Mr., "alright,next time there's a pandemic and we have to wait in line to get vaccinated in the middle of winter (because the weather today was just like winter), I'm going to come more prepared with blankets and a thermos full of hot chocolate!" Yeah, "next time" there's a pandemic. Right.

Anyway, they were going to open the doors at 8:00 am. And we got there just before 6:00. So two hours. In line. In the freezing cold. I'm glad I wasn't a pioneer. I don't think I could have made it.

Luckily we got there when we did because they're estimating that over 4,000 people showed up in the line! We were about 350 people back. So not bad. It was interesting to watch the police and crowd control trying to maneuver the line. At one point we almost saw a riot. Almost. But for the most part, people were really calm. Ahhh, "Happy Valley," 'tis why I love you so :)

We met some fun friends while waiting in line. The couple in front of us - they're having a baby in January. Well, technically she'shaving the baby, but you know what I mean. We told them that the waiting in line reminded us of when we waited for the Price is Right. Which, of course, turned into a "What?! You guys were on the show? And you actuallyWON THE SHOWCASE?!!" conversation. And, my trusty techno-savvy Mr. pulled out his phone and we ended up watching the entire episode of the show that we appeared on while waiting there. Nice. That killed at least 45 minutes.

We were SO happy by the time 8:30 rolled around and we made it INTO the doors of the building!! I'd never been so happy to have HEAT! And a bathroom! We filled out some paperwork, waited in more lines and then it was our turn ... finally ... at about 9:15.

3 1/2 hours of waiting in line. Just like Disneyland. Or the Price is Right. Only at the "end of the tunnel" instead of there being a light - or a fun ride - or a game show to be won - there wasonly a stab in the arm waiting to be had. But ... a stab that will hopefully be worth it so that our baby doesn't get sick.

Oh - on a side note, it was pretty funny (and sad ... am I horrible for thinking this is funny?) to just sit and listen once we got inside the building. It was noisy - full of CRYING kids!! Poor little things! The Mr. said, "This is like waiting in line for Santa Claus. You wait in line forever, then sit on someone's lap and cry!" Ha! That was my favorite quote of the entire day. So true!

Here's a news article link ... we were there ... in the midst of all that craziness ...

http://www.ksl.com/index.php?nid=148&sid=8463898

Obviously ...

...Obviously I haven't posted on this blog for a long time. A. Long. Time. And some of the very most exciting-est (I know that's not a word, and yes, I'm going to use it anyway) stuff of my life has happened in the months since I've posted.

The most exciting being ... that ...

Actually, I will save it for later ...

I will post more details soon ...

Stay tuned!

Rundown

Okay, so here's a rundown of the past 6 months ...

May

In May, our "Summer trip extravagaanza" began. For those who don't know, the Mr. and I appeared on a game show earlier this year and ended up winning ... the big prize at the end! Four trips!

So ... here's a little taste of where we went. Do these pics of the Mr. and me give the first trip away?

And here's another trip that started off the month - complete with yours truly participating in the "American Idol Experience" at Disneyworld in Florida. (I think it's been "our year!")

On the adoption front, the news we got in May wasn't as encouraging. On Wednesday, May 27th, I posted the following on our private family blog.

Today has been a discouraging day. I posted a status update on Facebook about this, but I have gotten messages from a couple of you saying that you'll be checking our blog for more in depth information. So I'm just going to go ahead and include the letter that we received today (with names blanked out for privacy's sake).

Thanks to all of you for your love and prayer and concerns. We love you.

Here's the email we got today:

Dear families, received an email from the Attorney. Things there have been moving slowly on the safety home and social worker side. We unfortunately have given them a deadline as to the movement of this adoption of June 1st. They still seem a bit suspicious about the whole thing there is a possibility of relatives around, but the social worker is dragging feet about the advertisement so this is why we have been a bit more forceful to get them to make a decision. It may be a possibility we will have to bring in a social worker from elsewhere. We will do all that we can. If for some reason this cannot happen with these children would you consider a referral? This is just in case. I have attached the letter wrote to the SH by the Attorney.

Dear Ms __________

I really do not know what to do.

When I spoke with you, it was agreed that there was a process that needed to be followed. You then suggested I speak to Ms _______, which I did.

Ms ______ confirmed that the first step would be to find out whether both children were adoptable. It seems that there was a rumour that the child/children could have extended family living in a neighbouring community.

Two options were discussed, one finding the family by physically going in to the community, the other, by advertising to see if anyone would come forward with information.

Ms _____ advised that the advertising costs were very high – each advertisement would cost over R1000 and this was a major problem for your organisation. I offered to seek assistance to pay those costs. I asked Ms _______ to find out exactly what the advertising amount would be.

I took care to explain that this did not mean that there were conditions attached to such payment – the advertising would purely be to find the children’s families, if they exist, with a view to helping the children reunify with their families if the families were able to suitably care for them, alternatively, if no family came forward, to approach the courts to see whether the children could be declared adoptable. The possibility of the family/families consenting to the possible adoptions of the children was also discussed.

My strong sense after the discussion I had with you and with Ms ______ was that we were all working together for finality for these children.

However, when our Ms ______ attmpted to follow-up and find out exactly what amount would be required so that we could pay for the newspaper advertisements, we were told not to interfere with the process and reference was made to our “forcing the issue”.

There are two options for these children: either no-one does anything to finalise their future and they stay right where they are for the remainder of their childhood, alternatively, we work together to give them the stability and security that they deserve. This may well be with their birth families, but until a proper investigation is done, it is impossible to tell.

We have decades of experience in working with children, heading up teams of social workers, paediatricians and counsellors through courts ranging from the local Children’s Courts to the Supreme Court of Appeal and to the Constitutional Court. We remain committed to ensuring that children’s best interests are served.

We have seen children thrive and flourish when placed within the nurture and care of a family environment, and steadfastly believe that every child deserves a family.

It is not fair to the two families, who have already spent years being screened from their side by their country’s authorities and who have been highly recommended as adoptive parents to continue pouring their hopes and dreams into a lifetime with these children.

It is even more unfair to the children themselves, as every week that goes by is time that needs to be made up.

If you have no intention of allowing these two children to find that security within a family and you insist on misconstruing everything that we are trying to do to find out what would be in these children’s best interests,please be gracious enough to let me know.

At that point, the families will have a decision to make – to either accept that you do not intend assisting these children in finding family care, alternatively, to instruct us to approach the highest authorities in our country to request that an investigation be conducted to find out what would be best for these two little people.

My offer to pay directly to the newspaper/s the costs involved in advertising for the families of these two children to come forward remains in place.

However, this whole saga cannot drag on indefinitely. You told us to wait until the beginning of May; it is now almost the end of May and we seem to have regressed rather than making any progress at all.

Please would you let us know by close of business on Monday 1 June 2009 whether or not you would like us to assist with the advertising costs and if so, the names of the newspapers and the costs involved.

My heartfelt prayer is that we, as professionals, can work together tosecure futures for these children that are bright with hope and promise.

Yours sincerely

MS __________________

PRESIDENT & FOUNDER

June

Well, the deadline of June 1st came and went with no word. Two days later, I posted the following update on our family blog, with the title, "I feel like I'm going to throw up."

Dear ________

Thank you for obtaining the letters from the families so quickly – I immediately forwarded them onto the email address that we have for the Safety Home, marked for the urgent attention of Ms ______and Ms ______. I also printed out the emails and those were faxed off to them under cover of a separate letter for each family.

I do not think Ms _______ had received those letters when she telephoned our offices an hour ago. She referred to the letter we had sent her insisting on some feedback (otherwise we would presume that they didn’t want us to try and assist these children).

She was so rampant and mad with me that I can only presume that she had just received that first letter (yes, the very one that we faxed, emailed, and again faxed and emailed yesterday). Her voice was shaking and she was close to tears. She was furious that we were “telling them what to do” and “chasing them up”. She told me that it was up to them as social workers to move the process forward and that they were busy with their “investigations”. She was unable to tell me one single thing that they had done. She was also cross about us offering to assist with the advertising costs – I told her that she herself had told me to speak to _____, that _____ was the one who told me that was the next step from her side but that the financial implications were ________ is a child protection organisation that has its own social worker, as she kept on referring to the “attorneys” in most derogatory terms, telling me that the placement of children was a matter that should only involve social workers and social development, not lawyers, and even when I gently reminded her several times, that the conversations she was referring to were the ones she personally had with me, as President of _______, she didn’t seem to get it.

I explained that the reason that I had gone back to her at the beginning of May was because she had told me to (that was a month after we had previously chatted), and that we were now in June a further month down the track and that it was clear that absolutely nothing had happened from their side… I pointed out to her, that in my experience, every day counted and that I woke up each morning with urgency for each child who could potentially be placed with a family. I reminded her that even if the children’s birth families were to come forward and be able to care for them, that we would all rejoice at that, but that in the absence of anyone doing anything to find those parents or to advertise for them, nothing was moving forward at all to secure the futures of these two children.

She told me that I had two options – to “leave the matter” (as in, walk away and leave the children right where they were) or alternatively, not to have any further contact with them and they in their own time would let us know what was happening.

I asked if we went with the second option whether she would be prepared to at least let us have interim updates on the situation and what was happening from their side, as obviously there were two families with expectations and also papers that were valid for a limited time period. She thought that was a preposterous idea and told me in no uncertain terms that she would not be prepared to provide us with any updates and that is was out of the question.

Towards the end of the conversation, she accused me of trying to “tell them what to do” and of “undermining the Home by not following due process” simply because they were a Black organisation. I had to take a deep breath as I explained to her that some of my very dearest friends are Black, that my life is devoted to helping Black children find families, that some of my honorary godchildren and families with whom we vacation are Black…

I did not feel that I had the right to “scupper” these two potential placements, so you will be pleased to know that I bit my tongue, agreed to everything she said, and told her I would advise you as the agency, who would in turn let the families know, and that I looked forward to hearing from her at some stage in the future!!!!!!!

There may well be further feedback from her once she has read the letters from the families, in which case, I will be sure to let you know straight away.

In the meantime, though, you are welcome to forward all or any part of this email to the families to give them strength for the wait…

With kind regards,

________

As you can imagine, this letter came as a shock and I was in tears because of it. At this point, we weren't sure what to do.

Then, on June 8th, we received the following letter:

Dear ________

I drove out to _______ Court early this morning to spend time with the Children’s Court Commissioner there before he went into Court – he was horrified to hear how things have been delayed…

I would like to send an email with the little information that we have on the children to the ______ Children’s Court Commissioner, asking her to please confirm that these children fall under her jurisdiction and further asking her to formally request, with time limits, proper information and a detailed report from the social worker so that we can ascertain whether these two children are adoptable. I will reiterate our offer to assist with the advertising costs.

You need to know that this is a risk. The Commissioner may refuse. Even if she agrees, it will in all likelihood burn bridges once and for all with the Director and social worker at the Home. The report that is provided (if it is standard) will not suffice for Hague purposes and we will need thereafter to get an additional social worker’s report filed to properly meet all requirements. That could also be difficult if the Home and its Director and Social worker refuse to co-operate.

Having said all that, I really do not think there is any other option for these families, and for these children.

Please would you confirm that I can go ahead and email the Court, with the request that they insist that an investigation is done so that the Children’s Court enquiry can be finalised, even though it is high risk?

I look forward to hearing from you.

With kind regards,

___________________

That same day I wrote on my blog, "Our friend (who is adopting a child from the same orphanage) had the idea to try one more time to reach out to the director of the orphanage before we approach the court. She wrote a very heart felt, humble and sincere letter that will hopefully soften her heart. I won't share the letter that she wrote, for privacy's sake. But the Mr. and I are also hoping and praying that this will work."

Me, the Blubbering Fool

Here's what I wrote on my personal blog back in June, in the midst of all of our international adoption struggles (please keep in mind that I share this only in hopes that it may strike a chord with someone else, somewhere out there who has maybe felt the same kinds of emotions):

Please forgive me for getting personal for just a moment. I know that NOBODY leads a perfect life and everyone has challenges. (As my quote from Marjorie Hinckley says on my side bar ...) But tonight, I'm just not strong enough. My head is spinning and I think I need to write my thoughts down in order to have some sort of therapeutic relief. I'm having such a hard time looking through blogs of everyone and their cute families and their beautiful babies. Even though I am genuinely happy for the people that I love, and excited for their little miracles, tonight I'm having a hard time reading about all of the announcements of expectant mothers and first teeth and last days of preschool and kindergarten. Of first words and food aversions and even of "horror" stories of staying up all night with a crying or teething child. I feel like the Mr. and I are missing out on the most beautiful and wonderful gifts that life has to offer. And we can't do anything about it. The more we actively try to pursue having a family, the more our dreams seem to be put on hold. Obviously there are reasons. And most days I'm okay with it. In fact, most of the time, I feel pretty happy. But tonight I'm weak.

Tonight, simply put, I feel like I'm not good enough. Like I'm failing as a person. I feel like my talents just aren't as good as everyone else's. These days, anyone can pick up a camera and do photography. What makes me think I am special? And don't even get me started with music. I know that so many people are hundreds more times talented than me and I've started to resign to the fact that I'm just not special and never really will be. I wish I was eloquent with words and could inspire people with my blog like so many others have done. But I'm not and I can't. And then there's the whole mother thing. As much as we want and beg and plead with the Lord to bring us babies, it's not happening. For years. It's just not happening.

I know that people, in response to this post, will write and say things like "It will happen. It will happen for you guys." And "you'll probably end up with a house full of kids, just you wait." And I know that it will happen. Our time to be parents will come. It will. I have hope in that and I don't think I can ever lose hope in that. But just for tonight, I'm feeling so left out of life. I'm having vivid nightmares of those days when I was a kid and was the last to be picked for the kickball team or when playing "Red Rover" no one would ask to send Cristi right over. I feel like life is going on, circling on, around me. And I'm just stuck. Left out of the fun and the joy and laughter.

I know what the solution is. And I need to come closer to my Heavenly Father. Only He can dry my tears and only He can lift me to greater heights. And really, I guess it doesn't matter if I'm not special in the eyes of the world. Or in the eyes of my friends. Or in the eyes of the blogging community. Or the eyes of mothers in the park. I know that I am special in the eyes of my Father in Heaven. I know that He loves me. And I know that my husband loves me.

I am not one to ask for people to pray for me. I never have been. But we feel it so important to ask for the prayers and love of our friends and family during this time in the adoption of this little boy from Africa. If you have read my former posts, you will know why. If you would like to join us in prayer, in fasting, we would be so eternally grateful.

I know that the feelings I'm having tonight will pass. In fact, most likely, by tomorrow I'll be back to feeling like myself - happy, blessed and full of gratitude. And ... I should write on my blog MORE during those times. It seems like lately, I'm only posting when things are down. I need to recognize the hand of the Lord in my life more and post our day to day blessings and miracles too.

I just had the quote pop into my head from Elder Jeffrey R. Holland from last General Conference. In talking about the death of his beloved wife, an infant daughter, and a young son, he said, "I've never asked 'why', but rather 'what is it that He wants me to learn from this experience?' I think that's a good way to face the unpleasant things in our life - not complaining, but thanking the Lord for the trust He places in us when He gives us the opportunity to overcome difficulties."

Okay, "self." Now I definitely know what I need to work on!

Thank you for letting me vent and ramble tonight. I feel much better already! :)

June, Continued

In the middle of June, the Mr. and I made a big decision. The adoption process in Africa was taking a painfully long amount of time. It was currently at a stand still and we didn't know how long it would take to eventually go through ... IF if went through at all.

One day, we started thinking about the prospect of adopting an infant, here from the United

States, while we waited for the international adoption to go through. The more we thought about it, prayed about it, the more excited we got!

We immediately found a local agency through a referral and started our paperwork with them.

It's amazing how different, how beautiful the world started looking to us again - full of hope.

July

"Gallbladders are overrated!"

That was my post headline at the end of June, after having spent over 5 hours in the ER, finding out I was having a gallbladder attack.

So, at the very beginning of July, I went in for immediate emergency surgery to have my gallbladder removed.

The surgery went well. Obviously it went well enough for me to be up and going to Lake Powell just about a week and a half later with the family! Although, I took the time to mostly just heal. And I didn't even get in the water (couldn't soak my incisions yet), which was a great feat for me!

I actually did recover quite well and pretty quickly from the surgery. And in no time, was back to doing fun, summer activities that took up the rest of July.

August

July ended and August started off with a bang by the Mr. and I celebrating our FIFTH wedding anniversary by taking two more of our "game show win" trips - to Beverly Hills and the Hamptons.

On the night of our anniversary, we went down to the Santa Monica Pier and rode the ferris wheel at sunset - twice. Very romantic.

The next day, we flew out to the Hamptons and enjoyed a relaxing seven day stay.

Diagnosed

On Wednesday, August 19, I wrote the following entry on our personal blog:

Today, I was diagnosed with Fibromyalgia. The diagnosis was based on years of symptoms, but mostly on the "points test." If 11 out of the 18 points that they test are tender or painful, they give you a positive diagnosis. 13 out of the 18 points tested positive for me.

It's interesting that I wasn't upset at all. My initial response was, "Well, just chalk this up to one more experience that I'm meant to have in this life!" And the scripture kept running through my mind,

"know thou, my [daughter], that all these things shall give thee experience, and shall be for thy good."

At this point in time, I'm seriously just so grateful to be alive and to have a body! I wouldn't trade this earthly experience for anything! That's right - the infertility and miscarriages, the arthritis, Lyme Disease, Fibromyalgia, and whatever else will be thrown my way. I wouldn't trade it for the chance to come to earth and receive a body. Thank you, Heavenly Father, for entrusting me with this tabernacle.

August, Continued

And ... the BIG NEWS starts!!

As I mentioned, two months earlier, in June, we started the paperwork with a local adoption agency to adopt an infant from the USA.

On August 24th, we got the news! Here's what I wrote on our blog:

Are you sitting down?? Are you ready for some BIG news? Sorry that we're not CALLING everyone to tell them personally, but our list is TOO large and we are too EXCITED to not share!

We have been "chosen" by a birth mother to adopt her baby!!! She is due October 1st! So ... in 5 weeks or so we are going to be PARENTS!!!

I will give more details soon! I'm actually off to bed SOON. I just wanted to get this information out there!

WOO HOO!!! We could NOT be more THRILLED!!!!!!

We were told that the birth mother had never had an ultrasound, and so we didn't know the sex of the baby. But the very next day ... this ...

NEWS flash/update!! We just got a call from the adoption agency - the birth mother had an ultra sound today and ...

it's a ..........

BOY!!!!

WOO HOO!!!! We're SO excited!!!

So if you have any boy name ideas, we'd love for you to share! We had our girl name pretty set in stone, so of COURSE it's a boy, right? :)

Oh! AND the due date has been moved to October 22nd - he could be born on my birthday!! This will be the BEST birthday EVER!! :)

The next day, I showed off our very first purchase for the world to see ...

...you could say we were excited :)

September

The first part of September was THRILLING!! It was spent making plans that had been FIVE YEARS in the works! Okay, truth be told, I'd been waiting my entire life to be a mommy - so more like THIRTY years in the making!

Baby showers to plan, cribs and nursery items to purchase, little onesies to buy, names to consider. It was a whirlwind of excitement and emotions!

However, on Wednesday, September 23rd, our rollercoaster ride of emotions began.

Here's what I wrote on our blog:

We just got a call from our adoption agency. Our birth mother has changed her mind. So it looks like no little baby boy bastian next month.

Please keep us in your prayers. I'm having a pretty rough time right now.

That day and night were very rough for us. We went through all of the emotions you can imagine - shock, anger, hurt, frustration, sadness and then, finally acceptance and sorrow. However, we also, even though we couldn't explain it, felt an immense amount of peace that night, in the midst of it all. We felt like it would be "soon" and we would have our baby. That didn't make the mourning any easier, though.

That night, before I went to bed, I opened up a book and my eyes fell directly to these words:

"The storm fronts that come into our lives will not last forever. We can surmount the drifts of difficulties and we can hold out if we maintain our perspective and faith ... Just as we know there is a sun just beyond today's cloud cover, so we must not doubt the continued, watchful, and tutoring presence of The Son in spite of the stormy seasons in our lives." ~Neal A. Maxwell

The next morning, I awoke rejuvenated and the thought, or rather, the scripture, came into my mind, "Weeping may endure for a night, but joy cometh in the morning." ~Psalm 30:5

Just then, we got a phone call. A call that would be life-altering. It was from our adoption agency. They had a baby for us! That day! Already born (two days earlier) in state, and the birth mother was going to sign the paperwork and make it legal TODAY! Were we interested??!

Here's your answer ... written on our blog just a few hours later ...

Well, what can I say? Miracles never cease! And God works in mysterious ways ...

At about 10:30 this morning, we got a phone call from our adoption agency saying that they had a baby boy that was born on Tuesday and the birth mother wanted to sign away her rights today.

We quickly went to our agency, signed some paperwork and then went to the hospital to meet the birth mother. She is a darling girl and we fell in love with her and her brave decision. She signed away her rights to us as this baby's parents at about 1:00 pm. We then drove to another hospital, where the baby is in the NICU and held our little baby boy for the first time!

We are in absolute LOVE with him!!! He was born three weeks premature and so he has a few little problems breathing on his own. And he also has an infection. So he's in the NICU right now. It's so sad to see him all hooked up to the wires and cords. But he is a GORGEOUS little guy! Just six pounds, 4 oz!

Right now we couldn't be more shocked, excited, happy, grateful, grateful, grateful or GRATEFUL!!! Thanks for all the prayers, love and support!

Everything is a whirlwind right now - crazy emotions and we're really busy trying to notify people. So please don't mind me if I don't post for a couple of days. We'll be in the NICU for awhile too :)

That pretty much gets you caught up to date. Almost. And I'll try and keep this thing updated more often.

I can't believe the turn of events our lives have taken in the past year. I need to keep a "gratitude journal" and perhaps this blog can serve as that purpose. We shall see. All I know is that I definitely have enough "material" to fill 10 gratitude journals right now! :)

An equation for your mathematical enjoyment ...

This weather
+
My body
=
Bad combination

Flashback Friday

My dad died of cancer when I was 12. I recently found these pictures in an old baby book of mine and decided to scan them. They melt my heart and make me so happy. My dad was always playing go fish or some other card game with me. I love and treasure these memories with him.

Christmastime 1981, age 3

Are you for real?

Oh, the weather! Really?! This is what we looked out on late last night! In APRIL! And yes, as you probably can imagine, it's taking it's toll on my body. I can feel it in "my bones!" I am SO ready for spring!

A view of the front of our house ...

And looking into the back yard ...

things you wish you could tell people about infertility

Tonight I came across this on the blog of another couple that is trying to adopt. I thought it was really interesting. And although she comes across as a little abrupt for my personal taste, a lot of things I do agree with and can truly relate to. Especially the part about still struggling with the pain associated with infertility as we wait to adopt. That doesn't really go away. So I thought I'd share this woman's post. I'm going to change the names for anonymity's sake...

She writes,

"Dealing with infertility has most definitely been the hardest thing for John and I to endure. As we wait to adopt, we still struggle with the pain associated with infertility and that may never go away. I write this to simply share my thoughts and experiences, not to offend anybody.

My sister Julie sent me this list called "Things We Wish We Could Tell People About Infertility," along with this amazing music video called "I would die for that." She is pregnant right now, and she has voiced to me how grateful she is to be blessed with children. She has been humbled by my struggle with infertility and has told me how my experience has affected her pregnancy. Her sharing those feelings with me has touched me in such a way she will never realize. We are in the same stage of life but on different ends of the spectrum. She is pregnant with her 3rd and it has always been easy for her to get pregnant. I have struggled for 7 long years with nothing to show for it. Although she doesn't know what it's like to suffer from infertility, she, along with the rest of my family has helped John and I carry this burden.

There have been many people along the way who have said things to us that was probably never meant to hurt our feelings, but in a way did. I took it in stride but I always wished there was a way to let them know how I truly felt, but never knew what to say. Here are a few examples and what I wished I could say.

1. Pregnant people have told me "You're so lucky you don't have to go through this."

My Response: I would go through morning sickness, swollen hands, feet and legs, constant backaches and whatever else it takes. I would do anything to be in your shoes and to become pregnant. Don't complain to me about the blessing you have been given. You are the lucky one.

2. People have asked me this question when their kids are misbehaving. "Are you sure you want kids? They can be such a pain sometimes"

My response: If I didn't want kids I wouldn't have gone through all the expensive medical treatments, Dr.'s visits, and procedures to find out that they didn't work. I wouldn't have spent 6 months filling out piles of paperwork, jumping through so many hoops, and feeling like I have to be perfect just to qualify for adoption, then be willing to wait for who knows how long to be picked by a birth mother who deems me good enough to raise her child.

3. "You'll get pregnant after you adopt"

My response: Although there are so many instances where that has happened, you can't assume it will happen to me. Adoption is not a cure for infertility. I have accepted my infertility and am confident that adoption is the path best for us. I will love that child more than anything, but at the same time I can still long to have experienced life inside me. That will never change.

4. "Once you stop trying it will happen. You just need to relax."

My response: If I can't get pregnant with fertility pills and other medical procedures, what makes you think that "not trying" or "relaxing" will do any better. Infertility is a medical condition that many people suffer with. Relaxing won't help infertility just as it won't help cure cancer or any other disease."


I have to admit that some of these things have crossed my mind on more than one occasion. I'm far from perfect. :)

I also know that 9 times out of 10 (maybe 9 1/2, even), people are just trying to help and be reassuring and calming. So I most often just brush it off.

But still, after all these years. After everything we've been through. I would LOVE to experience the joy of carrying a life inside of ME. Even though we are adopting. That pain and longing for our own pregnancy may never go away.

And, sometimes, I don't want people to say, "Keep the faith." Or, "Chin up!" Because I already know to do those things. And 99% of the time, I think I do a pretty good job of it. But ... every once in awhile ... in those fleeting glimpses of times ... I just need someone to wrap their arms around me (even their virtual "arms" through a response in the computer) and say, "I'm so sorry." Just that. Those simple words.

It's not that I'm feeling sorry for myself. But I am feeling sorrow. And it will pass. Give me a moment. Or two. And it will pass. But in the meantime, could you please just put your virtual arms around me and tell me that you love me?

I Stand Corrected

Thanks be to my sister who is a generation older than me (Sorry, J - but it really does add to the story to say that) for correcting me. It's actually HANGING around ... nothing to do but frown ... yaddi yaddi yaddah. BUT ... I guess "laying around" fit my situation better today, so I changed the words accordingly (yeah, we'll just go with that so it doesn't sound like I didn't really know the right words ...)

:)

Rainy Days and Mondays

Conversation last night went something like this:

Me: Do you think Karen Carpenter had arthritis?

The Mr: Umm ... no, she had an eating disorder.

Me: I know. It's just that she sang about how rainy days (and Mondays) always got her down. I guess she wasn't being literal.

Rainy days. Sigh. This weather. Not good for my "bones." And just my body in general. I have a feeling it's going to be one of "those weeks."

Last night the Mr. and I were talking about our future and where we'll end up. We would really love to stay in our beautiful state - with the mountains and our friends and family. But we may end up moving somewhere warm and where the weather is more stable just because it would help my health so much. Do you think that's why so many old people live in Arizona??

Now I'll leave you with these parting words ... "Laying around. Nothing to do but frown. Rainy days and Mondays always get me doooowwwwnnnn." (Oh, and for the record, I'm not frowning. But I am laying around since it's a rainy Monday.)

This is Why ...

...I sometimes wonder why I don't live in Arizona - or someplace else where the weather is more stable. It's drops in the barometric pressure like the one we're expected to have within the week that make life frustratingly ... frustrating!


It's interesting that I can start to feel the change coming in my body three or four days before the storm actually hits. The barometer must be dropping, and dropping fast. A 30 degree temperature change within TWO DAYS? Oi!!

Looks like it's time to give myself another shot of Enbrel in preparation for the storm (storm in more ways than one).

Four Times

That's how many times the Mr. has called me from Wally's tonight, asking this or that. (I sent him armed with the power of a grocery list ... that obviously wasn't specific enough ... :)

1st call:
What kind of cheese do I get? How big should the block be?

2nd call:
What kind of beef is good for stir fry? Does it have to be cut up already?

3rd call:
They're out of pink trident. Do you want me to get you the watermelon kind? (He knows this is particularly important since I can't eat sugar. And trident is my only form of "treat" or "candy." Even though - as a side note - I don't condone chewing gum in public. And definitely never with your mouth open)

4th call (and this one came as I was writing this post. So I had to change the title from "3 times" to "4 times"):
Do you care what kind of laundry detergent I get? I think I'll get the high efficiency kind.

My response "That's good babe. Okay, thank you."

:)

How in the world would I ever get through any sort of chronic illness without him? How did I last for almost 26 years before we got married? And seven of those with RA? I don't know. But at least I'll never have to know again!

What am I doing

awake at 1:00 am, you ask?

Oh, that's right. Just wasting time online while I should be sleeping!

But ... dang insomnia!

Actually, I'm up because the Mr. (sweet as can be) just ran out to Wal-Mart (I'm very ANTI Wal-Mart, but it's the only place in the valley that is open 24/7) to get me some laundry soap. Yep, that's right. At 1:00am. In the morning. Am. Morning. 1:00. He's a gem! I think I'll keep him!

And just for the record, he even said he'll DO the laundry tonight so that I can sleep if need be!

That's right, ladies. Time to put your anti- jealously glasses on! :)

A keeper, I said. A keeper!

I Just Discovered ...

...a Writer's Workshop! I'm excited to start participating in this. What a good excuse for me to get my brain going!

So ... over at Mama's Losin It she holds a Writer's Workshop. She gives you prompts and you choose which one (or more than one) that inspires you most. My choice for this weeks Writer's Workshop is:

5.) What happened in the last year? Write about something you can do now that you couldn't do a year ago.

Ummmm, welllll, let me think about this one. Tough call. Since I still can't fly. I still only have two hands. And I still am not pregnant. Let's see, what CAN I do differently now that I couldn't do a year ago?

I know! I know! Pick me! Patience!! Waiting for our adopted child to get here from Africa has definitely taught me patience.

But ... hmmm ... nevermind. That's no good. I'm still not a patient enough person. And, in my mind things still aren't moving quickly enough for us to bring Charlie into our family. So, yeah, patience is still probably not something that I can write about yet. (And, sigh, who knows if I'll ever be able to conquer that one.)

So, moving on. What else? Let me tap my brain. Tap, tap, tap. I give up. I can't think of anything meaningful or life changing that I've started doing in the past year. BUT ... I have started a couple of new blogs to let my creative juices run wild.

Creative Juice Photography
Cristi's Creations

And one to use as an outlet for the ramblings of a young woman with chronic pain.

A Living House

I guess that's sorta(semi) monumental. I can now use actions in Photoshop that I didn't know how to use a year ago. And I can make blog backgrounds that I didn't know how to do even four months ago. And I can hopefully help others feel not alone in times of chronic pain or other trials.

So ... I guess, truth be told, I'm doing okay. I'm still not a super woman. I don't have magical powers. But I am me. And I am a better me than I was 12 months ago.

Thank you, Kat, for the challenge. And may you continue to bring it on with the writers workshops! My brain needs this!

Blessed Day!

I was able to get my right meds yesterday - the insurance covered it (miracle!) and gave myself a SHOT last night! YAY!!! Finally! Hopefully I will be feeling so much better! Life is good!

Little Miracle

So after numerous calls to my doctor's office, to the manufacturers of Enbrel, and to the pharmacy, we finally got everything straightened out and I will be getting the RIGHT meds tomorrow!

I'm thankful to have Jeff, my good husband, because I haven't been feeling up to...well ... anything. It's hard to have a flare up and not have any idea when my meds will be coming to give me relief.

The doctor's office was shocked that the pharmacy messed up and ordered the wrong form of shots in the first place. The pharmacy claimed no wrong doing (truth be told, it was their fault), but in the end, after the doctor's office called them, they decided to go ahead and give us the right stuff.

And the miracle of it all is that the insurance is going to cover it!! Miracle of miracles!

So ... hopefully by tomorrow night I'll be feeling a little reprieve from all this. AND, on top of that, the weather is supposed to stabilize a little bit. Yay for being able to move! And therefore being able to live life!

And, while I'm on the topic of "yays" and "blessings" and "miracles," I really am so thankful for modern medicine too. RA is something that has the potential to be irreversably damaging. But because we caught it when I was young, and because of the advancements in medicine that happened to be coming around right about the same time I was diagnosed, we were able to stop the permanent damage to my joints. And for the most part, the flare ups are usually in remission. This doesn't mean I don't suffer consequences from having an autoimmune disease. Because I do. On a daily basis. But the unbearable pain - the kind that doesn't let me walk or move or anything - is managable. I remember getting a Priesthood blessing when I was first diagnosed that said that the Lord has given us doctors and science and the advancements of modern medicine to bless and benefit our lives. And I have definitely witnessed this first hand.

I'm really thankful for the love and support of friends and family. Jeff, my mom, dear friends. Seriously, through everything, I've realized that our relationships with people are what really matter in this life.

Anyway, I'm rambling now. But I just wanted to journal my thoughts on how THANKFUL I am that everything will be working out for me to get the RIGHT shots tomorrow! What a HUGE blessing! I'm so thankful for little miracles in my life!

What a Loser!

The following is excerpted from the blog, The Single Gal's Guide to Rheumatoid Arthritis, by Sara Nash


Let's face it; rheumatoid arthritis is kind of a loser disease. I mean, if you have to get saddled with a disease, getting a popular one would make some things about the whole ordeal a little easier to take. For starters, when you told people what you have, they wouldn't:

A. stare at you with a blank, slightly puzzled expression while trying to emit sympathy even though they have no idea what you just said or what that is.

B. easily dismiss it because they have it, too, in their knee, their ankle, their shoulder....ahem or

C. tell you that now is the time to have RA thanks to the superdrugs out there, and besides, it's not like it kills you. (Never mind the fact that it painfully eats your joints, makes you feel like Death's best friend, and let's not forget the complications and sicknesses that come with the meds we have to take)


If you have RA, chances are you know what I'm talking about. Just once, I'd love to get an email or a Facebook invite from a friend asking me to a benefit for the disease I've actually got. Wouldn't it be lovely to be able to take yoga or pilates classes especially designed for people with RA? How comforting must it be to go to the bookstore after being diagnosed and see rows and rows of books about your disease, telling you what to eat for it, how to exercise for it, treat it and survive it. How to laugh about it, talk about it with your partner, your kids, your doctor, your boss, neighbor and that random person you bump into on the street. When I got diagnosed with
RA, I was so dismayed, not only to find out that I had a disease (obviously), but also to find out that I'd gotten stuck with one that nobody seemed to know or care about. Restless leg syndrome had more books sitting on the shelf of my local bookstore than did rheumatoid arthritis. Nothing against restless leg syndrome, but seriously?


... So not only do you get RA, but you get a kind of weird inferiority complex, like "My disease isn't as good as yours since it doesn't have any bling, good merchandise or Lifetime movies about it." We don't even have a celebrity as a spokesperson. Kathleen Turner finally revealed that she has RA in her recent biography, but sadly, it didn't make a big splash, and even if it had, next to all that juicy backstage gossip, her struggle with RA took a backseat in the telling of her story.


... Why do some diseases seem to capture national empathy while others are relegated to the back of the bus? It's not just about the mortality rate, because heart disease is the number one killer of women, but breast cancer is much more identifiable, better-funded and it gets all the attention. Shelley Lewis, author of the sharply funny Five Lessons I didn't Learn from Breast Cancer (and One Big One I Did), writes about this phenomenon in her book, and it got me
thinking. Why is RA at such a disadvantage?


For one thing, the fact that it won't kill you makes it harder to dramatize. Knowing it's not fatal is good if you have the disease, but compared to personal stories of struggle and triumph with illnesses like cancer or Parkinson's, rheumatoid arthritis is just not tragic enough to pull on the heartstrings of the public. And, since it is a chronic disease, there is no shout-from-the-rooftops, "I SURVIVED IT" moment. There are only smaller, harder-to-portray moments of glee and glory, such as "HOORAY! My drugs are working! I don't feel like utter crap today!" But RA isn't ever really over, it's just dormant at times -- if you get lucky, that is.


I don't think there are any colors for an awareness ribbon left, though I suppose we could move on to patterns. Maybe RA could be polka dots or a perky Scottish Tartan? The idea of having a big walk for RA strikes me as being a little flawed (Arthritis Foundation does have one) given that many people with RA either can't walk, can't walk without assistance, or can't walk for long periods of time without suffering some real, no-holds-barred pain. I know I can't. I could get through it, but the thought of walking 5K, even for a cause so directly related to my well-being, doesn't exactly inspire me to go and sign up for one if I'm being really honest.


So, where does this leave all of us? I'm not sure I have the solution.....yet!


Excerpted from the blog, The Single Gal's Guide to Rheumatoid
Arthritis, by Sara Nash

I Can't

Sometimes I feel like I'm not very good at saying "I can't." There are a number of different reasons why I don't like uttering those words. I don't like people to know how much I really am hurting. I don't want to make myself so vulnerable. Because most times people don't know how to be empathetic. Or even sympathetic for that matter. I don't like people looking at me and thinking that I'm weak. And most of all, I don't want to be a complainer. I don't like to be looked at as anything other than positive and happy.

But this weekend, I've said, "I can't" quite a lot. Even if just to myself. I've had a tough time. And I think I'll continue to have a rough time until I get my new shots and/or the weather stabilizes.

I do a really good job of hiding my illnesses. Of pretending like I feel good most of the time. When, truth be told, there hasn't been a day in my life when I've felt 100% - or even 90% - for 10 or 11 years. But people look at me, and because my diseases are "silent illnesses," they see a young, vibrant woman, who seems to have it all together. But I'm here to tell you that most times, I feel like everything is falling apart.

I know these feelings are temporary. They're fleeting thoughts that come when I have a flare-up of my RA. When it gets really bad like this, and I can barely move - or sit for that matter - feelings that I've supressed for months, and even years, come bubbling up to the surface with full force. And they most often times come spilling out as tears. Lots of tears.

I'm really happy to have started this new blog. This is designed to help me get my thoughts about being sick down on paper. And to try and find other people out there in the blogosphere whom I can connect with - fellow sufferers of chronic illnesses.

Anyway, these are my thoughts. And this weekend has been a weekend of feeling like "I can't" and admitting that. However, it's also in these times of "I can't," that I realize that my Savior can. I feel like I can't handle the pain. But He can swallow it up and wrap His arms around me. I feel like I can't hold my life together. But He can. I feel like I can't help but let people around me down. But He can lift them up. I feel like I can't get the support I need. But He can give me support, love and comfort.

I'm thankful for my Savior. For the atonement. And I'm thankful for Jeff. Without these two people, I don't know how I could ever manage in this life. I DO have a support system - an unconditional, loving network of people around me. I guess I just need to let these people in. Let them help me. And let them do the work. When I can't.

Supporting a Loved One With a Chronic Illness

by Diane F. Haddad
Content provided by Revolution Health Group

If you have a friend or family member with a chronic illness, you know how helpless watching a loved one's suffering can make a person feel. But don't let that stop you from reaching out. Studies show that having a strong social support network can improve one's health.

A study published in the March 1, 2006, Journal of Clinical Oncology, for example, showed that women with breast cancer who reported having close family and friends were more likely to survive the disease than those who didn't have strong social support networks.¹

About chronic illnesses
One-third of all Americans live with a chronic illness, according to the U.S. Centers for Disease Control and Prevention. Arthritis, back problems, cardiovascular and lung diseases, cancer and diabetes are the most prevalent chronic diseases. Some disease sufferers live near-normal lives with treatment. But certain conditions, such as rheumatoid arthritis, are debilitating.

Isolation and loss of independence compound the physical symptoms. In fact, people with chronic illnesses have up to a 33 percent chance of becoming depressed, according to the Cleveland Clinic. Your loved one may be unable to work, clean the house or even use the bathroom alone. He might be reluctant to go out and risk strangers' stares. Finances may be strained, and friendships may fade.

"It was difficult for friends to sympathize with my medical problems and the impact on my ability to socialize," says Nancy Jay, 34, a Chandler, Arizona, resident who has fibromyalgia, which is known as an "invisible" disease because sufferers appear healthy. "Most of my friends are working, going to school and raising families. Simply getting through my day is often a challenge, and they can't understand what I go through on a daily basis."

What you can do
"There's a role change and lack of identity in the ill person — he's no longer the person who does 'X,' " says Mountain View, California, oncologist William Buchholz, MD. "Friends have to learn a new relationship, just as the ill person does."

Show your friend you value her companionship as much as you ever did. Enjoy your favorite activities together, adjusting plans as needed. Ask her what accommodations would help, such as choosing a handicap-accessible restaurant.

"The biggest disappointment is when someone says, 'Oh, we didn't ask you because we thought it would be too hard,' or 'Everyone else is bringing something, but you don't have to,' " says Sheila Becker, 58, who has multiple sclerosis and is a board member of the National Multiple Sclerosis Society's Cincinnati chapter.

"I'm still me," she says. "It's OK to ask how I'm doing, but mostly I want to talk about stuff other than my disease." So discuss movies and music and the other things you have in common with your friend or relative. Talk about your own problems, even if they seem small compared to hers, and ask for her advice.

Lending a hand
Both Becker and Jay cherish friends' assistance with daily activities. If you're not sure how to help, ask your friend or a close family member of hers. Avoid vague offers like "Let me know if there's anything I can do." Instead, be specific: Call your friend or relative and ask if she needs any groceries, invite her kids over for a play date, drive her to the doctor's office or load her dishwasher.

Get other friends and family to pitch in. You might even create a schedule and assign everyone days to bring dinner or pick up the kids from school. Make it fun, too, by gathering the group to participate in a fund-raising event; visit the website of a related health organization to find one.

It's best to ask your friend if she needs help before jumping in, says Becker. "Offer an arm when walking, but don't be offended if she says, 'No thanks.' Be aware: If the sidewalk changes to cobblestone, offer your arm again. The friendliest help is usually the most subtle."

What to say
There's no perfect thing to say when your loved one is having a bad day, and nothing is wrong with admitting, "I don't know what to say." You don't have to say anything, as long as you listen to her and let her know it's OK if she wants to vent.

What if the sick person isn't taking medicine on time, is eating poorly or is otherwise not taking care of himself? That's a tough one, says Jay, and what you do depends on your relationship. Talk to his caregiver or a close family member first. You could gently broach the topic with your friend, but be aware that he may become angry.

What not to do
Certain things you say or do can brighten a person's day. But other actions may make him or her feel even worse. Here's what not to do:
• In a health crisis, don't shower the sick person with flowers and get-well-soon cards, which he may feel obligated to acknowledge with a thank-you note. Instead, send a "thinking of you" card and offer constructive help, such as calling distant family members or picking up children from school.
• Instead of saying, "You don't look sick" — which might imply your loved one isn't really ill — tell her she looks or sounds good.
• Avoid rushing to do things for a chronically ill person. If you think he'll need assistance, ask, "Can I lend a hand with that?"
• It's fine to share what you've read about the disease, Jay says, but don't bombard your chronically ill friend or family member with the latest advances in research. Chances are he knows about them already.
• Don't visit without calling, and don't stay too long if your friend seems tired.
• When your friend or relative expresses fears about his disease, don't trivialize the illness by saying, "You'll get better." Express your support by listening and saying, "I'm so sorry you feel bad."

Take care of yourself
Supporting a chronically ill friend or relative can take a toll on you. You might feel sad, frustrated or even overburdened if she leans heavily on you. "My illness has caused [my family members] to feel guilty they're healthy," Jay says.

A support group for friends and families of chronically ill people can help you process your feelings. Check with local hospitals and health organizations, and do an online search for the disease and "family support group." If you need time to yourself, it's OK to tell your loved one that. When you feel re-energized and relaxed, you can offer your best support.

Reference
1. Kroenke CH, Kubzansky LD, Schernhammer ES, Holmes MD, Kawachi I. Social networks, social support, and survival after breast cancer diagnosis. Journal of Clinical Oncology. 2006; 24:1105-1111

Reviewed by: CME Peer Review

©2006 Revolution Health Group, LLC. All rights reserved

Not So Hot

I'm not doing so hot. I haven't posted for a couple of days because I haven't been out of BED for a couple of days. I'm just waiting to get my new Enbrel shots and waiting for the weather to stabilize a bit. Until then, sitting hurts. Walking hurts. Even laying hurts, but it's the lesser of the three evils. :)

The Parable of the Spoons

I thought I'd share something I came across a few years ago. I loved it when I found it. Simply because it is EXACTLY the truth! This girl hit the nail on the head with this little story/article/theory/parable she wrote. The only difference is that she has lupus, I have arthritis. But they are very similar. Both are autoimmune diseases.

So, without further ado, I hereby present to you, the "Spoon Theory."


The Spoon Theory
by Christine Miserandino
www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become.

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away
that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan
like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

© 2003 by Christine Miserandino Butyoudontlooksick.com
“The Spoon Theory” at www.butyoudontlooksick.com/the_spoon_theory - Thank you!

I'm Going to Cry

This is an entry I posted on my personal blog earlier this evening. Going through this experience was one of the reasons I decided to create this public blog. Maybe there are others out there who have experienced similar frustrations and here we can band together!


I'm generally a pretty positive person. Or at least I try to be. I have a lot of health complications and haven't had a day where I feel 100% good for about 12 or 13 years. But even through this, I TRY to stay happy and positive. And people are usually commenting that I'm a bright and cheery person.

But today I'm struggling. I admit that I have a lot of moments like this. Even if I don't show them to "the world." In fact, perhaps only Jeff and Heavenly Father know how much I really do struggle internally with having chronic health problems.

I don't even know how to blog about stuff like this most times because 99.8% of the general population doesn't understand and can't try and pretend like they do. Chronic pain is like that. Most of the health conditions I have are "silent diseases." People wouldn't know just by "looking" at me that I'm sick a lot. So I just keep everything to myself. And I express it to my husband who is amazing and dear and takes great care of me.

The weather we've been having is wreaking particular havoc on my body. The pressure changes really affect my joints and my arthritis. When it gets really bad - mostly when the weather goes from warm to cold (and especially when this change is drastic or quick) - it is hard for me to even move or get out of bed for that matter.

The saving grace I have is Enbrel. It's the medication I've been taking for 8 years (next month) to control the symptoms of my arthritis. Enbrel is an injection I give myself subcutaneously. I've always injected myself in my thigh and I've never had a problem giving myself the shots.

However, recently, I was given a new type of shot. I used to mix the medication myself in a little vial mixer they sent. (see illustration below:)
And this last batch of the meds, they sent are pre-filled syringes.
I didn't think there'd be much of a problem. In fact, I figured it would be good - cutting out a step by eliminating me from having to mix the vials myself. But ... I just tried injecting it. And it's BAD. Awful. I am crying. The needles are bigger. Duller. It was hard to even try and inject myself in the first place. And then the solution itself BURNED going in. And I have a high tolerance for pain. But I'm talking BURNED. I couldn't even finish giving myself the injection. I know what you're thinking. "What a wuss! Just suck it up and take the pain." But I'm NOT a wuss! I've been giving myself shots regularly for EIGHT years and this is different! This is bad!

I immediately went and called my doctor's office. But, because it's Friday, and after 5:00 pm, I only got their answering machine.

So, next, I decided to do my own little online research to try and see what's going on. I found some message boards that say the new pre-filled syringes have an extra preservative in them that the old "mix it yourself" solution didn't have. And some people react very adversely to this preservative. (And apparently I'm one of those "some people.")


By this time, I'm just mad. I'm mad that the manufacturer changed the product on me. A product that I've been using for EIGHT YEARS! And product that was JUST fine before! Don't they know the old addage, "If it aint broke, don't fix it?!"

So, the next step was to call the pharmacy. I wanted to know if they accidentally messed up and sent me the new pre-filled syringes when they should have sent me the mix it yourself ones. And if they could send these ones back and give me a refund and let me get the right ones. But ... the pharmacy said they can't do that. They can't send a medication back once it's left their store. And because the medication is so expensive (without insurance, it's about $1500 per month!! Luckily I am insured ... but that's another story for another day ... or five), they can't issue a refund either. So they suggested we call the actual manufacturer.

By now, I'm so upset that I'm crying and frustrated (and in a lot of pain). So Jeff is doing the calling. He's on the phone with the manufacturer right now, as I type. (Which I SHOULD stop doing, because sitting is hurting.)

I just overheard him say that they do still make the stuff I used to take - the mix it yourself vials. And that I just have to request that my doctor write a prescription specifically for that. And that the pharmacy makes sure and fills it for the "25 mg multi-use vial." Which is actually a huge relief. And enough to make me stop crying. BUT ... in the meantime, I can't get a refund. I can't get more meds yet because the insurance only covers one dose per month and we sure as heck can't spend $1500 to get some without insurance!

And. I'm in pain. And the only thing that helps when it gets this bad is Enbrel.

So. What to do? I'm going to try and buck up and give myself this new dose. Because I would rather have stinging for a couple of hours than the inability to move for 10 days.

Now that I've blogged about all this, I'm starting to feel silly. For venting. When most people won't even know what the big deal is. It's a little embarrassing. Which is why I almost always just keep it to myself. But I also admit that I do feel better getting it down on "paper."

I guess the good thing (if I can't give myself a shot right now) is that maybe I can get rid of the cold I've had for the past month or so that's been giving me so much grief. The only downside of Enbrel is that it is an immuno-suppressant, which means it greatly lowers my immune system. So I am almost always going to catch anything that's going around. And it knocks me out more than it does the "average Joe." But that's a small price to pay if it makes my arthritis pain all but disappear.

I took the title for this blog from one of my favorite quotes of all time - "A Living House" by CS Lewis. This was shared with me about 8 years ago when I was first being diagnosed with rheumatoid arthritis and going through a really hard time. A complete stranger, whom I had only met through the internet, shared this with me. And it has stuck with me to this day.

A living House

God is building you!

by C.S. Lewis

C. S. Lewis quote. God's work in our lives can be painful, but His ultimate goal is to transform us into something better.

Imagine yourself as a living house. God comes in to rebuild that house. At first, perhaps, you can understand what he is doing. He is getting the drains right and stopping the leaks in the roof and so on: you knew that those jobs needed doing and so you are not surprised.

But presently he starts knocking the house about in a way that hurts abominably and does not seem to make sense. What on earth is he up to? The explanation is that he is building quite a different house from the one you thought of — throwing out a new wing here, putting on an extra floor there, running up towers, making courtyards.

You thought you were going to be made into a decent little cottage: but he is building up a palace. He intends to come and live in it himself.

C.S. Lewis, in Mere Christianity

Now I've Gone and Done it ... :)

So a few days ago, I finally bit the bullet and made my personal family blog private. But I'm a very open person and think that sharing our trials with others not only is a coping mechanism for ourselves, but can also help others get through similar situations. So I decided to make a separate, more "anonymous," and non-private blog to document by daily struggles and triumphs. I may have no readers. I may have only one or two. But that doesn't matter. This will be more for me than anything.

And so ... here it goes ...

:)

(Started Friday, March 6, 2009)