Friday, July 25, 2014
I had the extreme pleasure of attending the 2014 National NAME convention last weekend in St. Louis, Missouri. I'll be sure to write more about this in the future, but I wanted pop in real quick to show you my "showstopper" favorite purchase from the sales room. This beautiful balancing kitty came from Lew and Barbara Kummerow, who are two of my heroes in the miniature world.
The Kummerows are legendary in the mini business, and I was so incredibly honored to meet them in person. I even asked them for a photo, so now I have one for my scrapbook of Awesome Miniaturists I Met in Person (that I intend to get around to making one of these days. Ha!).
The Kummerows were so kind and lovely. I immediately noticed this little balancing cat and had to have it! I got it for an excellent price, and I lovingly babied it all the way home until I knew it was safe back here at Farmhouse Villa.
I am wee kitty! See me balance!
I'll share more babbles about the event soon. I knew you had to see this kitty RIGHT NOW though because it's just that awesome.
Wednesday, July 16, 2014
I've been on Lady Fortuna's bad side lately. My Wheel of Fortune is somehow locked at the bottom -- stuck there. With every spin, I end up with something Really Stupid happening. No fun at all. To cheer my spirit a bit, I decided it was time to bring another family member into the house. Felipe follows in the tradition of Pez, Greta (who barely lasted a blip), Diego, and Juan Carlos. Felipe is an "elephant ear betta," which I thought was very appropriate considering my ear whoosh problems at this time. Even though he was quite expensive for a betta, I fell in love and freed Felipe from those awful, little containers they keep bettas in.
I usually just use a 1 gallon glass bowl for bettas, but I decided to kick it up a notch for Felipe. My other bettas have died these really horrible deaths (usually at old-man-betta ages, thankfully), so I thought perhaps Felipe would stay healthier in a bigger area. I got a 2.5 gallon tank from Petco. Even though this is really annoying for my awful back, it will be OK. I just got a new back epidural/steroid injection on Monday, so I should be feeling really good soon. Also, I'm planning on getting a heater for the first time when I get my next check. Farmhouse Villa gets extremely cold come winter, so I'll start warming the water now to keep this little guy happy all year-round.
Felipe was so relieved (and perhaps confused) to suddenly have so much space. He swam all around and showed off his beautiful fins. I love his coloring -- such a purty fishie:
I got Felipe a plant, a leaf hammock, and a statue to hide in. However, I read that this particular statue has a problem with flecking paint, so I immediately removed it and will be returning it. I have a newer, better hide on order. Felipe didn't seem to like that statue anyway. He never went inside for the day it was in there. He LOVES that leaf hammock though. He rests on it all day long:
I cluttered up the bookshelf where Felipe is staying just in case Gretchen tried to get to him. She doesn't seem to notice him much, however, so I don't think we'll have any problems. Please note that Ollie is standing guard:
I feel so peaceful when I watch Felipe swim. The movement is hypnotizing, especially at night when I'm all wired but need to go to bed. The only problem is that Felipe is now on a Hunger Strike. He ate that first day, but now he hasn't eaten in... 5 days. But I did read on a betta forum that this is OK -- that bettas can go for a month without eating, in fact. I also read that sometimes they don't eat when they're getting used to a new home. I'll be patient. I hate change, too.
Wednesday, July 09, 2014
Clark Street has NOT been a fun place to be lately. When I've had time, I've been working on a Real Life house purge, so I've been cleaning and donating and organizing like a madwoman. Even an extreme procrastinator will look forward to cleaning when there's something she wants to avoid (like the dead silent house when I'm reading a book, which I haven't been able to do with this double whoosh going on). Yes, cleaning is distracting, and I can crank up a movie in the background to try to drown out the constant heartbeat. Vigorous cleaning and scrubbing also wears me the f*ck out, which helps me a bit at night. Regular insomnia + pulsatile tinnitus = barely any sleep.
I've been so busy with work that I haven't had the energy to mini lately. This has been very boo hiss because mini-ing is so good for my mental health. I'm going to make time for little 10 minute tasks on Ollie's house or the Beacon Hill soon. In the meantime, I can LOOK at my minis.
Imagine my surprise when I found my Wizard of Oz ornament set in the home office while I was digging through a stack of crap in the corner! It's supposed to be down in the basement packed away with the Christmas decorations and ornaments that I haven't touched or used since 2009-ish. I was 100% certain that I was going to have to go down into that creepy basement and dig them out at some point. Nope! They've been right next to me this whole time. Yay!
The ornaments you see above are the Hallmark Magic of Glinda 2006 ornaments. Luckily, I had just started mini-ing in 2006, so I bought these brand new in a Hallmark store because I already knew I was going to have at least one Wizard of Oz room in the Beacon Hill. Now, they would be Stupid Expensive because they're a collector's item. The sets on eBay are quite pricey.
Due to a fantastic surprise package in the mail this week, I now have three sets of ruby slippers total. This is wonderful because one can never have too many pairs.
(Note to Self: Check Hallmark each fall for new Wizard of Oz ornaments.)
I can easily remove the hooks in the future. Purty little slippers:
Next we have the red slippers made by the dearly departed Wanda Leighton. I bought these from her at the Metro Mini Makers show and sale in 2013:
They are actually regular bedroom slippers, so you can see that they don't have the heels. I still love them though:
And then we come to the sweetest of ruby slippers sets. My dear friend Morrigan sent me these beauties:
They're hands-down my favorite pair because they show the bows so clearly:
They also look the most like Dorothy's real slippers to me, so I lurve them for that, too. I'm certain to find more ruby slippers over the years, but these will have a special place in my heart because they're from a friend. Thank you, Morrigan!!
I also found a few meows in the box that had the Hallmark set in it. My first Christmas back home, I bought two, little stockings for King and Webster. I needed two gray kitties fast to decorate the stockings. I found these yellow/gray sets of ornaments at the cheapo store in town because I was rushing. Who would have known that years later, the yellow and gray kitties would be the correct colors for Webster and Gretchen? So now if I ever decorate for Christmas again, I'll have right ornaments on hand:
I wonder what else I'll find in this home office? Time to get back to it...
Sunday, July 06, 2014
Recently, I had a new CT to take a look at my temporal bones in relation to my pulsatile tinnitus. Then I got a copy of the the films and sent them on CD to Dr. Possibility. While I was waiting, I read the report from the radiologist. Once again, the word "normal" appeared all over the place. I cried. I was angry. Once again, I was convinced that I'll forever be "unremarkable" regarding my PT problems -- that no one will ever be able to cure me. It was crushing.
Via email, I told Dr. Possibility of my disappointment. Bless his heart, he explained that many radiologists don't know what they're looking for regarding PT. He wanted to wait to SEE what the films said -- not someone else's interpretation. In the meantime, he asked me some new questions. One of them was whether or not I've ever been tested for intracranial hypertension. I have not. But this new scary set of words went straight through me. And then I made the dreaded mistake of asking Dr. Google about it. Once again, I was convinced I was going to stroke out at any moment. Once again, Dr. Possibility calmed me.
It's possible that I have intracranial hypertension. If I do and it doesn't bother me, it's possible that I would be able to do nothing about it and still be OK. I'm grateful to Dr. Possibility for explaining that to me. He also explained what he DID actually see on my films when they arrived, and I THINK it's good news. (I still have an extreme amount of difficulty understanding medical-speak.)
I have a "sigmoid sinus abnormality on both sides." Both of the words I was looking for were mentioned in Dr. Possibility's findings:
- sigmoid sinus dehiscence
- sigmoid sinus diverticulum
From what he can see on the films, on the left side (the long whoosh) I have the dehiscence, and on the right side (the recent whoosh), I have either ectasia or diverticulum. We need to look at other films to be sure or perhaps get new ones. I'm going to get copies of my MRI/MRA from 2010, and we'll go from there.
Here's something new that I FINALLY figured out after all this time. The sigmoid sinus is NOT a sinus -- it's a vein. WHO KNEW??? Here is the wikipedia explanation. Like I said, I've been avoiding reading about my possible problems because they make my anxiety fly off the charts. But anyway, basically, my bone is thinning between this vein and my eardrum on both sides. So over time, the bones wear away, and the veins are virtually sitting on the eardrums. WHOOSH WHOOSH WHOOSH WHOOSH.
So what to do about it? Dr. Possibility said that because I am able to record my PT outside of my head now and based on the findings, the liklihood of curing me with surgery is "high" -- but only if there are no other wonky/troublesome findings on the MRI/MRA or any other tests that would mean something else -- possibly something much more serious -- is contributing to the whoosh.
Is this good news? My brain said YES YES YES, this is GREAT NEWS!!!! But my body remained numb. I'm too pessimistic about the whoosh to get my hopes up. I've gone into self-preservation mode. My castle walls have been well fortified, and it will take some heavy lifting to get them down. But it is a baby step in the right direction, and I'm happy about that.
I did take some time to read up on the cured whooshers who have had similar diagnoses on the whooshers.com site, but then I freaked out and had a breakdown. Surgery on one's head/neck is quite serious and dangerous. It scared me. Once again, I have to back away from over-knowledging myself about something that will cause panic attacks. Some people are comforted by knowing all of the information. In this case, I'm not. I'm going to shut down Dr. Google and whooshers.com just for a bit. I need some distraction and distance from the fear I'm experiencing. When I'm stronger, I'll share more with the whooshers.com community. They're my peeps, and I need to keep them updated.
Of course, it's the Fourth of July weekend, which means everyone is on vacation. I also just had to fly to Texas and back for my aunt's funeral. So no movement has been made about getting the MRI/MRA test results sent to Dr. Possibility. I sent out an email request to Dr. Whooshsaver's nurse. I'm sure she'll see it soon and help me make it happen.
Then I wait.
I'm used to waiting.
I'm not certain that anyone in the Midwest has the experience to correct my problem with surgery, so it's possible that I might be going to Maryland for that. I don't know if you can do both sides of the head together or if it has to be one at a time. The surgery basically involves beefing up the temporal bones right there around the eardrum -- patching them in some way. I'm purposely not learning more about the surgery right now. All good things in time.
So there is your whooshing update for now. Thank you so much to all of my readers, my family, my friends, and my doctors. I've been receiving an incredible amount of support about this recently, and it means the world to me.
Go to whooshers.com for more information and follow their site on Twitter: @Whooshers
I don't have access to the Facebook page, but go to it HERE if you do!
To read all of my posts about my whooshing journey, go HERE.
Monday, June 30, 2014
My sweet Tante has passed away. We knew when she was diagnosed with Pick's Disease that she had a limited time left with us, but as with every death no matter what the circumstances, it was unexpected. I am sad, and my heart breaks for Ma and her family. It is a blessing that Tante has been released from her mean, horrifying, brutal illness. She is free now, and that is wonderful. But it's still sad, and I will miss her.
I last saw Tante when she came to visit in 2011. I'm glad I saw her then because she stopped communicating altogether at some point. When Ma last saw her, Tante didn't recognize her. I went through that with Grandma Blonderson and her Alzheimer's, but I can't imagine going through it with my own sister.
I know this whole illness has been very hard on everyone, and I do find some relief in knowing that this part of the suffering -- wanting so badly to have her communicate and having her not do it -- is over. A new kind of suffering or grief comes now, which is somehow easier to handle. I also felt great relief when Grandma Blonderson died, even though my heart was broken. I'm older now, so I know that this is best. I won't stomp my foot and cry about the world not being fair. I will embrace this death as a "good thing." Tante is free to fun and sing again.
But now I realize that it has begun. I'm no longer living in a world where all of my aunts and uncles are still alive. And because they are steadily aging and are now all classified as seniors, it's only a matter of time before they also start to pass away. This is a very tough realization for me, especially because I am so very bad at change. I want everyone to stay with me on life's long journey. My greatest fear is traveling it alone.
Death is hard for everyone, but it's especially difficult when you suffer from anxiety and depression. It's easy to go jump on the hamster wheel of negative thoughts and decide that everyone is going to die soon. Time is running out! My rational mind tells me that it will be OK, that it was Tante's time, that I'll have more time with my other relatives, that my parents won't die tomorrow, but my emotions and my heart have gone haywire. I'm afraid.
It's OK to be afraid.
It's OK to cry and be terrified.
It's OK to mourn Tante.
It's OK to worry about my cousins and my uncle and my mother.
It's all OK.
All of my grandparents died when I was still a teenager. Back then, I didn't know how to handle the grief, and I made a mess of it. Now, I know that everyone grieves differently -- and in his or her own time. My fears are just a part of my grief. There's nothing wrong with being afraid as long as I own it, acknowledge it, and then move on. I'll allow myself the terror of realizing my entire extended family will all be dead one day -- for just this moment. Just this blog post. Get it out, and be done with it.
I see you, Giant Fear Ball. I hear you. I feel you.
But you only get 10 minutes.
Shrinkydink always told me that if I was going to freak out about something for longer than 10 minutes that I had to do some kind of action about it to change the situation. This is my action. I'm taking control. I'm writing this all out, and then I can move forward with my day.
I'll still be afraid somewhere in the back of my heart, but "saying" these thoughts "out loud" makes them less scary for me somehow. It takes away part of their power over my mind. When I hold things in or pretend they aren't happening, I make things far worse for myself. So even though it hurts to write this, I'm doing it to release myself.
And now I can get back to what is really important -- Tante and her family. This isn't about me. It's about them. So I will do my best to give them all the support I can. I will be strong for them. I'll offer them my shoulder. I'll say the right things. I'll give them back all the love they've always given me. And hopefully, I'll be able to say goodbye without falling the f*ck apart.
I regret that I didn't have more time with Tante when I was an adult -- to really talk to her and get to know her. She was already too far gone by the time I realized how much I like talking with my older relatives. What do I remember?
Tante was an old-fashioned lady. She was always covered with her finest jewels. She smelled like powder and expensive perfume. She had a wild, cackling laugh and loved to chatter away. She loved her family's history and our Irish/German heritage. She played a mean game of bridge and had many points, whatever that means. I never did figure out the bridge thing...
I remember playing croquet in Tante's backyard -- and playing with those incredibly scary, giant lawn darts that are illegal now. She had a MASSIVE cat named Princess. She looked so much like my mother. They were often mistaken for twins. She traveled the world with my uncle and saw all kinds of interesting places. She brought me a necklace from Egypt that has my name written on it in hieroglyphics.
I remember Tante being terribly sad when Gran died and calling and crying to my mother on the phone. I remember the sound of her cracking voice and her tears. She did what Gran would have called "blubbering." I remember her calling on every holiday or birthday and not wanting to talk to her because she would talk forEVER (yes, I inherited this), and I really just wanted to play with my new toys. I remember my annoying boy cousins putting bending knives and fake ice cubes with flies in them or dribble cups out at Tante's gorgeous table when she made a big meal served on fine china. Oh, those boys. I remember her laugh the most. It was a fantastic laugh.
So yes, if I look past her illness, I do remember many things. Many wonderful things.
Thank you for being in my life, Tante. I will miss you.
Friday, June 20, 2014
I'm absolutely thrilled to share the good news. I have a CT (without contrast) scheduled soon to take a look at my temporal bones. This may be the key to unlocking the almost decade-long mystery of the ear whoosh. I'm too "glass half empty" to assume this will lead to an immediate cure, but I AM finding myself hopeful, which is good. I'm trying so hard to stay positive as the double-whoosh, AKA bilateral pulsatile tinnitus, thunders in my ears.
First, a bit of background just in case you haven't been following my PT journey. It's also confusing to me and my family, so it's good to remind everyone what has happened so far.
- I first noticed a whooshing sound in my left ear in 2006. I was living in Chicago at the time. The sound was/is a whoosh, whoosh, whoosh (sometimes with squeaks or other noises mixed in) that sounds like a baby sonogram going off LOUDLY inside the ear. It's pulse-synchronous, which means it matches my heartbeat exactly. This can also be identified as a bruit or a venous hum by some medical folks. I use the term pulsatile tinnitus, which can be confusing. This is NOT regular tinnitis -- the "ringing in the ears." This is far different in many, many ways. To learn more about PT, read this handy .pdf written by doctors from whooshers.com: Top Ten PULSATILE Tinnitus Tips for Doctors.
- In 2007, I went to see an ENT in Chicago. I had a hearing test, a physical examination of my ears, and a CT angiogram of my head, which means it was a CT with contrast. My sister was visiting me at that time, so she went with me to the CT angiogram, which was very comforting. I remember my cheeks being BRIGHT RED afterward -- the test made me very HOT. The doctor told me I was "unremarkable" at that time. I had a very bad experience with that Chicago doctor, and I've never been able to get the test results sent to me in the last seven years. I've now decided to pretend that whole experience (and the tests) never happened because it's easier that way.
- After blogging about my ear whoosh, I got an email from a stranger who ended up becoming a very close and personal friend. whooshEr was WAY more proactive about finding a cure than I was. By the time we became friends, I had completely given up hope. I was bitter, frustrated, and being tortured by the sound. After we talked for a while, I decided it was time to look for help from a doctor again.
- In 2009, whooshEr launched whooshers.com, which has raised an immense amount of awareness about PT and has brought together a ton of whooshers and doctors. I've said it before, and I'll say it again, that girl deserves an award.
- In 2010, I started searching for a vascular doctor in the Omaha area to test my whoosh, since I was now living in Iowa again. I had learned by then that the whoosh usually has nothing to do with your actual ears -- it's all related to the heart, veins, and arteries. I found a vascular surgeon, and I emailed him a ridiculously long explanation of what was wrong with me, which tests I'd had done in the past, and basically BEGGED him to help me. This is Dr. Whooshsaver, an amazing, compassionate, and helpful man. He helped me re-frame my feelings about doctors in general. It turns out there ARE awesome doctors out there.
- Dr. Whooshsaver sent me to an ENT for a hearing test. I also had an MRI/MRA of my head, a new CT without contrast, and a duplex doppler, which is basically a baby ultrasound on both sides of your neck. It was during this duplex doppler that my parents heard the sound of my whoosh for the first time. This is also when we planned to have a surgery to see if we could cure me by inserting a balloon into one of my veins. However, the record screeched to a halt when I realized how much it would cost to get the surgery. I had to pass on the surgery, and I was AMAZINGLY DISAPPOINTED. It was the worst day of my life so far, and I've had a LOT of "worst days."
- In 2013, I went to New York City for a conference. While I was there, I met whooshEr in person. We had SUCH a wonderful time together, and I'm so happy we met! (and will meet again in the future)
- Flash forward to the present. My ear whoosh migrated over to the right side, so now I have pulsatile tinnitus in BOTH ears. What was left of my sanity disappeared. I reached out to whooshEr. She's helping me. GOOD LAWD IS SHE HELPING ME!!!!!!!!!!
After whooshEr told me she thought she might know what my problem was based on reading about/working with so many doctors and whooshers, I reached out to Dr. Whooshsaver once again. In the meantime, I was also able to get in touch with a doctor whooshEr knows in Maryland, who has surgically cured multiple patients of PT. Let's call him Dr. Possibility. I really want to call him Dr. Cure, but even he said he might not be able to cure me. But he's willing to HELP and TRY. That's the most important thing!
I also just got an iPhone, so I tried recording my PT to see if it could be heard outside of my head. It can. I sent the recording to Dr. Whooshsaver and Dr. Possibility. I also sent it to whooshEr, who will be adding it to the Pulsatile Tinnitus Sounds page on her site. I can't figure out how to upload it here or I would. For now, I'll direct you to someone else's whoosh. Inside my head, my whoosh sounds most like Jessica's when it really gets going. My own recording doesn't sound like what I internally hear, but it does prove that others can now hear the whoosh on the left side. I was unable to pick up a sound from the right ear, but that doesn't surprise me since it's new and all.
Dr. Whooshsaver agreed to do any testing that Dr. Possibility recommended, but then he wanted to send me to a new local doctor who was more familiar with my condition/related to what Dr. Possibility is looking for. My heart sank. Is Dr. Whooshsaver breaking up with me?? Yes, yes he is.
But you know what? It's a gift. He IS helping me -- by releasing me.
Dr. Whooshsaver is an expert in vascular conditions. If I needed my heart operated on, I would go straight to him. But Dr. Possibility would like CT images of my temporal bones, which are NOT a vascular thing.
Dr. Whooshsaver is being awesome and helpful by basically being honest (not a quality I've encountered in many doctors in my life) and saying he doesn't know what's wrong with me, so he can't help me. But he'll "do everything he can" to help me find the right kind of new doctor -- and order me any tests I want through his clinic/hospital. Thank you, Dr. Whooshsaver. Thank you SO much.
[Sidenote: I might just decide that the new doctor is Dr. Possibility and fly out to Maryland to see him or have a surgery. We'll see. If he truly feels he can fix it, I'm IN, no matter what it costs me. I can't live like this forever. The solo whoosh was slightly manageable, but the double whoosh is not.]
Then whooshEr (bless her), put me in touch directly with Dr. Possibility. I put him in touch with Dr. Whooshsaver's nurse, who is fantastic. That's how we got to today with that new CT test on the schedule.
Wow. That was a lot of information. It's been quite the
I'm going to start working on the Heads for whooshEr soon, but in the meantime, I wanted to send her a special gift for helping me so much and giving me so much hope right now. I searched high and low for just the right thing. I found it on Etsy.
There is a company called Lost Apostle that makes gorgeous skulls, medical instruments, and hearts from brass, gold, and other materials. I found stunning twin hearts that are designed so that you can keep one and give one to your lover. whooshEr isn't my lover, but girlfriend needed an anatomically-correct heart necklace for SURE.
They had solo versions of the necklace, but I decided to get the hearts for both of us. I felt that I needed something tangible to touch or look at when I get in the lowest of lows and the whooshes are SO LOUD. I needed a symbol that I'm taking steps, that I'm closer than I've ever been to finding the cause. Before, we were flying in the dark and guessing. Now, we've honed in on a specific area. This is good. This is VERY GOOD. And it's all thanks to whooshER. I ordered the necklaces and had them sent to us. She received hers a few days before I got mine. When I saw it, I was stunned. It's so amazing.
The heart came on a gun-metal longer chain, but I didn't want to bonk it on things or somehow snag it and break the chain, so I switched it to a shorter one I have. I can't see it on this shorter one when I'm wearing it, however, so I'll use the other chain, too. I put a penny near it to show you the scale. It's so small, yet so perfect. I'm in love:
There are so many tiny details. I see something new each time I look at it:
Even the back is decorated. It also carries the Lost Apostle stamp:
I have not stopped wearing my necklace since I got it. I touch it to remind me that whooshEr is there, that I'm not alone, and that people care about me -- my parents, my doctors, my friends. Everyone is rooting for me to find a cure. Maybe, just maybe. But for now, I will focus on the love that is pouring in from so many wonderful people. I'll wear my heart charm and gain strength from it. And I will open my real heart to Possibilities...
It may be possible that the doctors can find a cause and/or a cure.
Go to whooshers.com for more information and follow their site on Twitter: @Whooshers
I don't have access to the Facebook page, but go to it HERE if you do!
To read all of my posts about my whooshing journey, go HERE.