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Category Archives: Life as a Spoonie

National Invisible Illnesses Day

Today I want to share a few pieces to help raise awareness; an encouraging one, one humorous, one to hopefully help others understand the “what”, and last is a link to an incredibly well-written and brave blog post about going from being a very active person to disabled by invisible diseases, with an insight into how “kind and helpful” comments can be very hurtful for those with invisible illnesses that can not be cured at this time. Some lucky people get to go into remission or were misdiagnosed; for most of us this is the new life we are forced to accept.

Some days this is exactly how it seems. *laugh*

And last, but not least, Jamison Writes’s blog post: “This is Why Exercise Can’t Cure Illness“.

Thank you for taking the time to read this and learn a little bit, if you’re unfamiliar with these illnesses; with a big Spoonie non-touching hug of encouragement to those who had to mourn their original lives and take it day by day. I wish I could give an extra two spoons to all Spoonies, so that we can shower and not have to rest afterward today!

A Few New Favorite Things

After being a lot sicker than usual for five months I started thinking about what could be playing with the Fibro to make me even more susceptible to illnesses. I dusted (I admit that I suck at staying on top of that), I used baking soda in the carpet, stayed away from my business shelves in case I had developed an issue with an ingredient…I tested a lot of things. My ability to grip things is getting worse, but caught even me by surprise when I couldn’t hold onto my drink while sitting in bed watching GMM on my phone. (Since my body is irritated by straight water right now, I’ve had to get creative with findings things to drink and Frappuccino became one, unfortunately. Lol) I knew my comforter would need to be washed to get the milk out. I stripped the bed and did a quick half fix to get us by until I built up another spoon to make the bed fully again. When I went to properly make the bed I truly saw the state of our pillow top and it was embarrassing. We had a foam insert inside the pillow top, so I knew that it had to be bad, as well.

I started thinking and realized that we bought the Sleep Number bed with pillow top and foam around 13 years ago. The Sleep Number and bedding was such a blessing as my Fibro pains began, and I truly think the combo gave me a little more time to enjoy having a career and a more active lifestyle. Years later I’m looking down at the bedding and thinking about what has probably developed in bedding that we didn’t realize was so old. With his help we went to straight onto the mattress with a fitted sheet and I knew this wasn’t going to work. Once we got our taxes done and knew we would be covered, I spent a few days researching mattress pads and pillow tops. During all this I realized that my congestion had improved dramatically and that although I was hurting more, I was actually getting better rest (which any Spoonie knows is nearly impossible). Something inside of our old set had gotten bad enough to compromise my system further. I was floored.

Anyway, fast forward to yesterday and five boxes from the mail man, with one being incredibly heavy so he brought it in for me, and a new bed was born. Lol They really need to put warnings on pillow top bags that states there may be an explosion upon exposing to air…I cut open the bag and literally got knocked over as this cushion exploded out and tripled in size immediately. It’s now funny, but was quite startling and irritating. *grin*

I then had to wrestle the mattress pad out of the big and heavy box. It was literally a wrestling match. It won several rounds. After I was pouring sweat and breathing harder than when I box, I managed to get the pad partially up onto a crafting table to air out. It was full on the hardest workout I have ever done. *laugh* As I collapsed into my recliner and stared at the 2″ pad draped over the table in front of me I realized that it was hanging unevenly. Dude. You suck. I kept staring at it while trying to catch my breath, but my OCD started screaming inside of my head. I can’t stand when things aren’t even. Sides have to line up if I can see them (I can’t see his side of the bed from where I am, so our bedding can be high for fun sized me and low for tall him without bothering me thankfully). The right side was at least 6″ longer. When I managed to get back up and try to even it out the doggone table tried to collapse!! L was still sleeping, so I knew I had an hour with this nightmare, and found that if I leaned onto the arm of my recliner with my phone at eye level, watching YouTube, it was all out of sight and my mind could quiet down. But seriously…a freaking piece of bedding got the better of me! After the brother knocked me on my bottom all ready!

Thankfully L got up and drug everything into the bedroom, and we made our revived bed. When we crawled in for a nap before he had to get ready for his shift it was so worth the beat down. There’s a little firmness, but for the most it just cradles all of my trigger points. And I woke up without trying to hack up a lung, too! It took about five minutes to convince ourselves to get out of the cloud of happiness. *grin*

I also ordered a germ guardian air purifier, but just got that running, so I’ll have to give it a thumbs up later on if it proves itself worthy. In the meantime I want to share the links for these two incredible pieces of bedding that quite quickly eased a lot of the extra pain I’ve been suffering from lately.

The gel memory foam mattress topper is by Milliard and set us back $124 for the king size.

The pillow top was a hard one for me to decide on honestly. I had a really difficult time deciding between the three I had narrowed it down to, but decided that the hypoallergenic and antimicrobial properties, plus being overfilled if I’m honest, were the winning features. The Leisure Town Mattress Pad Cover was $80.

These are Amazon member prices, of course, and the free shipping for such heavy items is so worth the membership, let alone the sales and shipping frenzy during the holidays, in my opinion.

Kiddo’s room is still the most incredible in our house, but our bed feels like the one I slept in at a Marriott. We got her an incredible bed set, but I have to say, I won’t hesitate to order if she asks for the topper and foam. A two hour nap all ready convinced me (at the time of the writing…I’ll schedule this to post in the morning while I’m still sighing happily in my fluffy bed. *laugh*). These are definitely going to be on my list of favorite things!

Before I go, I want to mention one other thing. I’m hoping that the links I embedded for you actually go to smile.amazon. If you haven’t heard about it, a portion of sales from Amazon, when ordered through the sister site of smile.amazon.com, go to charity. There’s a place in your account where you can pick the charity that you would like to have your percentage donated to. I totally respect that you may have a favorite charity that you would like to support. If you do not, though, it would be absolutely amazing if you would consider helping raise money for KCSL, who is the company Adopt Kansas Kids, our adoption agency, is under. KCSL supports a lot of different areas of the process, including fostering, adoption, training, and parent assistance. I embedded the link if you’d like to read their fast facts and hopefully look around their site a bit. Part of the reason our adoption has had a lot of delays is because there aren’t enough resources to process the less urgent parts quickly. It would mean a lot if we could help raise more for them and help more children who need all of us to advocate for them, not just an overburdened system. Here’s a quick view of the charity screen, although I marked out our part, especially since I don’t need L to see and figure up how much I’ve spent on Amazon. *grin* (Not really; we are open with each other about finances. We are private with public consumption though.)

There are a lot of charities being helped, although a lot of people don’t know about it. Although the heavy hitter charities are very worthy, it would be an incredible blessing if you would consider choosing KCSL for your charity. It does nothing for our adoption journey, but every bit truly helps take care of the children. “It takes a village to raise a child” as the proverb goes. I’d be so honored if just one in “my village” will help the children.

Okay, I’m done with the sentimental moment for the week. *grin* If you’d like more information about the products, Smile, or KCSL/Adopt KS Kids, please don’t hesitate to write a comment or email!

Happy pampering (and yes, a comfy bed is totally under the pampering umbrella!)! 🙂

Update on Our Journey

 

We are a few weeks away from working toward our adoption for a year and there’s been another delay.  I don’t know if we’re allowed to talk about it, so I won’t, but I can say that this is starting to take an emotional toll.

 

When we were at the ninth month it felt kind of right; an expectant mother has that time to prepare for and fall in love with that little miracle.  When we hit roadblocks or long waiting periods I would fall back on that concept and find my strength again.  We’re unsure of how long this delay will last and it’s honestly worrisome that we won’t have enough time to go through all of the stages and get to placement by the time the new school year starts.  We still need to go through private profiles, go through the BIS process (a conference call between the officials to decide if it’s a good enough fit to allow more in depth consideration), making the decision on who to meet, meeting them (and if we make a match the first time we don’t have to go back through the profiles, BIS, and deciding who to pursue this time), have at least four visitations with one being an overnight stay, and, if all works right, we get legal custodial rights and Kiddo is placed with us.  After six months the case gets reviewed, make sure things are going well and we’re bonding, and then we get to adopt Kiddo.  If this delay takes more than a couple more months I really can’t see how Kiddo will be ready to start school here next year.  I hate the idea of having to change schools in the beginning of their year, especially if Kiddo is just starting high school.  I had hoped we’d have placement by summer, so we’d have the time to work at really bonding and it’d be a little less stressful for Kiddo, since school itself will be a lot of stress, not to mention living in a new town, making new friends, etc.

 

I think one of the hardest parts of the waiting period is how much of our lives is in someone else’s hands.   Realistically, if everything goes well, our entire future is in the hands of a social worker, a case worker, a foster parent (or parents), a judge, and Kiddo.  We have the bizarre ability to pick our preference like a puppy in a litter, but it doesn’t mean that we’re going to get to take the puppy home and raise them.  We don’t just want to raise them until they’re 18; we want to be the forever family for Kiddo.  And there isn’t anything we can do right now to help the process.  If anything we were over prepared, over excited, and we can only do so much parenting and trauma research without knowing Kiddo’s actual needs, so we just wait for the email.

 

As a Spoonie I have so little control over my health and knowing when I’ll have a “good” day, so my natural “get it done” personality is stronger in the other aspects of my life.  Kiddo’s room is done, I’m not really able to shop anymore for Kiddo until we know their needs, wants, and sizes, and there isn’t a whole lot to scrapbook for her about our journey when you’re sitting around waiting.  It’s doggone hard to not have an ounce of control over any part of the most important path in my life.  I’m blessed to have an incredible psychiatrist that not only helps with coping with becoming disabled, but helps me not get fully depressed.  She even wrote a letter for DCF stating that I’m able to parent despite my illness, because I seek out help when needed, have a lot of coping techniques in my pocket so to speak, and it’s been almost 20 years since I went through my traumas, so Kiddo’s traumas won’t trigger me.  We can’t really work on my concern about Kiddo not bonding with me, since that’s a “what if” scenario, and really it’s just me doing my usual “risk analysis” instead of it being a true worry.  When I became a HIPAA Officer and had to learn to do risk analysis, I would never have guessed that the mindset would stick with me for the rest of my life.  *laugh*  Anyway, I’m trying to learn to take one day at a time and focus on what I can control, like coloring in my smart aleck affirmations coloring book.  *grin*

 

We also realized that underneath some of that concern about Kiddo not wanting me is the worry of being rejected once they see the real me.  Ask pretty much any Spoonie and they will admit that they try to always have a mask of “I’m okay” on and that very few people ever see what life is truly like for them.  We hide our bad days because we don’t want to be a burden and we know that people don’t usually want to hear that things are still kind of cruddy.  They usually just ask out of polite conversation etiquette instead of wanting to see behind the mask.  We hide the days we need a walker to make it from bed to the bathroom, the days and nights that seemingly go on forever because we can’t sleep or get quality rest, the cushions, heating pads, and meds that help us have some quality of life.  When Kiddo has stayed here for a bit and the honeymoon period has worn off my body will override my emotions again, and I’ll be back to my normal, so Kiddo will be one of the few to see the real me.  It probably doesn’t make any sense to healthy “normal” people, but it’s a scary thing for us usually.  We tried for so long to be successful in life, then we were told for even longer that we were okay and it was all in our heads when the symptoms made life so difficult, and then we have to endure having a diagnosis that a whole lot of people think is made up because they can’t see it.  If we had our legs amputated or had lesions where our trigger points are, then there’d be a lot more compassion and empathy.  So we develop our mask as a coping mechanism to protect us from rejection.  And it becomes really scary to think about someone seeing the real version and rejecting you.

 

In the first six months we had so much to look forward to, so much to work toward, and it seemed like we’d fly through the adoption stages because we were so prepared, so there wasn’t time for fear.  The waiting period is almost completely spent in the dark corners of my mind.  Once I realized this and she helped me acknowledge that it’s something that I can’t change, so I need to let go of the concern, my mind went to how many more delays will there be?  Can we emotionally handle another six months or year of waiting just to get to the next stage?  The imaginary time line is gone and every extra day tears at the heart.  It’s hard to focus on the hope and joy of the future when you can’t see the light at the end of the tunnel anymore, and it is even harder as a Spoonie.

 

So we’re going to quit looking at the featured kids and picturing the one we think would be a good fit in our lives actually in our lives (now that complicated sentence is almost as complicated as our feelings!  LOL).  We’re going to quit hoping that the one profile we really liked will still be available by the time we get the chance to inquire about her.  We’re just going to wait.  Our hearts break over how many children are in the system and how scary the statistics are for them if they age out, but we’ll try to focus on patiently waiting for the one ripple we’ll someday make in that sea of need.  We need to find a way back to the joy and hope we had as we painted her room, put in the bed and imagined having our own daughter sleeping in it, and those moments when we felt our hearts would burst from the love for her – the love for our own future daughter.  And we will have a laugh the next time someone says we’re jumping in the deep end by adopting a teenager.  Raising a teenager is hard, but we’re all ready going through hell just to get the chance to raise one.

 

Since the long waiting period has been so difficult to endure, and has tested us to remain patient, hopefully God will help us make the right choice the first time and we will minimize the extra trauma by getting her settled before the school year.  Then we can worry about rejection, the risks and stress of teen life, how to help her with her traumas, and which store will have a prom dress she might like.  🙂

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