Monday, August 24, 2015

Reasons To Love Whatever Day This Is...

There isn't much news from here in the nest - at least not anything without the designation "not for social media". I have such a bad reputation for the occasional overshare that almost everything the family shares with me is given the disclaimer of "NFSM". I mean, can I help it that my friends all live in Cyberspace? There is only so much info I can share, re-share, lather, rinse repeat with my usual Whine Cellar visitors: Sarabeth, Jamie, Cosette, Tasha, three cats, two dogs and my mom. Pop will occasionally approach the dungeon of doom but usually only long enough to toss down some chow.

I've been pretty stagnant here lately. The discomfort previously known as "evil gut pain" has overstayed its' welcome in the past week. Since last Monday I have been having such horrendous pain.. the kind of pain that makes you shaky, nauseous and anxious. What I wouldn't give for half a bottle of xanax right now! After having a really rough weekend I was determined to call the gyn doctor and say, "take it out... take it out NOW" but ultimately I don't have enough fight in me right now to extend any ultimatums, especially those that could potentially include leaving my nest. I'm trying to be super cautious about the use of my magical pharmaceuticals and have been trying some alternative pain relief. Not pot, if that's what you were thinking. I mean, ibuprofen instead of percocet, heating pad, changing positions, listening to music with the tv, computer and lights off. Does it help? Notsomuch. Well, maybe just a little.

I haven't seen Oliver or Cosette over the past week. Hopefully I'll get some quality cuddle time tomorrow with Cosette. Both have parents who are good to share photos with me almost every day. That helps.

I finished my latest embroidery project. I have two ready to be made into pillows, just need mom to have a day where she feels like dragging out the sewing machine. I can't wait to put those in the mail to two deserving people. I have two projects that need some finishing touches but I don't trust my pain addled brain to not mess up a project that is close to being finished so those are on standby waiting for a day with less distraction. I'm searching for my next project but nothing has really inspired me over the past few days while I've been browsing patterns.

I've been trying harder to sleep part of the night in the bed instead of the recliner and I've had some luck with it. There is this one very specific, highly supported position that is comfy enough to at least sleep a few hours. I'm afraid I'm going to be one of those people who has to be physically cut out of a recliner and carried out of the house with a crane. I've been trying to change positions often enough to avoid that HOWEVER once I find a position with less pain, it's tempting to not move a muscle or risk losing whatever bit of comfort I've found.

I did leave the house on Friday morning long enough to take Austin to work (still doing awesome! still hasn't missed any work! still putting money in savings every week!). I ran into the store long enough to get the necessities of life: gatorade, luigi's mango italian ice, lean cuisines. I need to make my big monthly stock up grocery trip but that will involve standing up straight and climbing stairs and being able to safely operate a vehicle so... maybe I'll make it into town sometime before Oktoberfest starts in September.

The good news is that I got a notice in the mail today from Social Security that confirmed that my case had been approved. The judge had said it would take 4 to 6 weeks for him to write his decision but instead it has been only 19 days. Hopefully that means there will be money (and Medicare) available sooner than I thought. Yeehaw. I am so grateful that my case was approved - you have no idea how grateful! But there is a huge reality check in the realization that people who know about this kind of stuff - like doctors and lawyers and judges - all agree that I am no longer fully abled. Like, I knew it already but it's still a bummer to have that validation. And it feels great to have that validation. All at the same time.

I'm also really struggling with not being able to see my babies as often as I would like (every day). It's discouraging to not be able to go where you want and do what you can. A good friend of mine from way back when lost her husband to cancer last week. So in all of this, "poor me, I can't see my grandbabies everyday" self-pity, there is also a big "I'm so blessed to be alive to see them ever and to hopefully watch them grow up." Life, even when it's not all that you want it to be, is a precious gift not to be taken for granted.

And that's it. I think it's Monday and Monday needed some love. We all do... so... love and hugs, y'all!

Tuesday, August 18, 2015

Life As The Nana of Two

When we last left this story I was just coming off of a "more social than usual" weekend and getting ready to head South by 100 miles, give or take, to visit with Ollie and his parents for a few days.

I don't know why but I just thought about the commercial where the grandparents arrive to visit the twin babies and the parents rush out with their suitcases while the grandfather drones, "don't leave us with the babies....". Visiting Ollie was NOT like that but we definitely all took turns bouncing, singing, walking outside, cuddling and developing our own recipe for soothing him. Cody said that he had been doing that bouncing comfort move so much that he found himself in Wendy's shaking his chicken sandwich up and down. I find myself randomly rocking from side to side whenever I'm standing up. After 21 years of no babies, I now have two babies and it still blows my mind! I use basically the same method of calming both Cosette and Oliver which is... swaddle their legs, hold them where their tummy is facing in toward my tummy and hold the paci in their mouth. This method only works if they're not hungry or in need of a change. My mom has a few tricks up her sleeve as well but the one that worked best was buying Ollie a swing!
 He loves his little swing buddies! Also, he has amazing neck control for a tiny baby! My boys all sat up by six months and walked by eight months and I think both babies will be on similar development paths. 

I remember when we brought Cody home from the hospital as a newborn... I was so excited to have two children at two different stages of development! Ryan was 3 years and 9 months old when Cody was born so I had the fun preschooler and the precious tiny little baby. On our first evening home their dad had to run out for supplies and I was alone with both boys for the first time while trying to sort out the laundry situation. They were both crying and all of a sudden it hit me... I had two kids who not only would be at two different stages of development... I had two kids who would both need me at the SAME TIME!  I leaned against the washing machine and slid to the floor in a moment of frightening clarity.

Having Irish Grandtwins carries a little bit of the same panic for me. It's so important to me that both babies know me and know how much I love them. It's important (probably more important here at first) that both sets of parents know how much I love their baby and that they feel supported and encouraged by me. I want to give the same amount of attention to both but the hard truth of the matter is that one baby is a few miles up the road and the other baby is a hundred miles away and I don't travel well.

Just for the record, riding in an RV is not the cushy, float on pillows experience I had thought it would be. There was a slight mishap with a little bump against the RV that hurt like a hot poker in my spine before we even got on the road. The comfy seats that I thought would make for a fabulous opportunity to prop my feet up - so my knees and ankles don't swell - were not as comfy as I thought. I had been warned that the bed in the back was the least comfy spot to ride in but about 3/4 of the way down I decided to try it out and it was better than the dinette seats if I propped myself against a pillow but it was painful enough to make this face. Lugging luggage - enough for a couple of days - meant more stress on my spine.

Respecting the difficulty of the journey made me want to soak up every drop of Ollie-love that I could while I was there. By the time we left on Friday I was one big bag of hurt. I'm still worn out - worn out enough that I had to postpone my usual weekly Cosette cuddle session today. I just don't bounce back like I want to. Factor in a round of Evil Gut Pain combined with a few arthritis flaring rainy days and... you've got a Two Naps A Day Nana situation.

But how sweet is this little fella with his arm up by his face? Cosette and Oliver both want their hands out of the swaddle. I'm more confident changing Oliver than I am Cosette because my three babies were boys. Girls have all those crevices and stuff. I've been left alone with Oliver but not with Cosette yet. Both are nurslings and both have maternal grandparents who are very involved in their lives. I'm glad that they are both loved so very much by people besides just Nana.  

  I could (and do) hold both of them past my comfort level because I just want to soak up as much of them as I possibly can! Both prefer being held up in a vertical position rather than being cradled in a horizontal way. Both have mine/their dads' lips and chin and you would think they are the fitting image of their fathers until you see their moms! Cosette looks a lot like Tasha and Oliver is Marquee Jr! They are both absolutely adorable and I love them so very much.

So much that I want to make everything as fair as I possibly can which is completely contrary to my parenting style. I NEVER set out to do all things equally for all three boys when they were growing up. I didn't want to hold out on things that I couldn't do times three and there were uh-LOT of things I couldn't do times three as a single mom. I wanted each boy to have their own unique bond with me and truly, that's what we have. 

Oliver sitting propped up on Nana


Cosette and her doll, Eponine. 
My greatest desire right now (always) is to have all of my eggs in the same basket. There are five people on this planet that wouldn't be here if I hadn't lived and I want them all together as much as possible. I want Cosette and Oliver to grow up together. I want pictures of them together - even dressed alike - as soon as possible. I feel frantic, almost, about having them get to know each other.

It's scary. My nephew Caleb and my niece Jamie are about the same distance apart as Cosette and Oliver. Their first photos together were when they were a year / nine months old. I took dozens of pictures of the two of them together and was soooo looking forward to watching them grow up together. But my brother has been estranged from our family since Caleb and Jamie were around 3 years old and I doubt either one remembers the other. I watch Jamie and try to imagine what Caleb is like now and grieve the loss of him and his siblings even still.

The bottom line is that love carries a risk, whether it's romantic love or the love you have for your family or the love you have for your friends. There's a saying that "to be a mom is to have your heart walking around outside of your body." Being a grandmother takes that to the next degree. I'm not a control freak but there is so much anxiety for me in not having any control over the lives of these babies. I mean, I am quick to suggest things when Cosette or Oliver are upset but I do try to defer to their parents' preferences for things like what I post on social media and - well, everything!  I'm pushing myself beyond my physical comfort zone to spend time with them. I'm also putting myself beyond my emotional comfort zone by loving them as much as I do. I've lost a lot in my life and I'm reluctant to develop or trust in relationships any more. Loving these kids makes me feel so vulnerable! Wanting them to know and love each other feels like the best legacy I can leave for them. No matter what the future holds for all of us, I hope they will find their way here and know how much I love and treasure them both from the very beginning.

Tasha told Cosette she was mailing her to Nana's and Cosette smiled... didn't quite catch the magic moment but still! Baby girl loves her Nana! She also loves her feet which she has just discovered.

Ollie-pop gave me a little smile last week but I was nowhere near a camera at the time. It might have been gas... but I want to believe it was a purposeful expression of joy!

Life as the Nana of two babies is beautiful beyond what I could have imagined and much more scary than I ever anticipated. I'd love to hear from those of you who are grandparents if you wouldn't mind sharing if you had the same kind of anxiety/delight that I'm feeling. Thanks for reading here. I've been working on this blog post for three hours so I'm gonna go watch some youtube videos and eat my italian ice. Love and hugs, y'all!

Monday, August 10, 2015

Cosette This Weekend, Ollie This Week

There are a few things I want to share but there's no logic or order to them so we'll call this a "random stuff" blog post.

Last Wednesday, on our way home from the hearing, these deer ran across the road in front of us in the same place they ALWAYS cross. It's not that we haven't seen deer anywhere else in our neck of the woods but this particular spot is ten times more reliably a spot of  "Deer Xing". The baby deer were about the size of a dog. Super cute! And taken through a windshield at a long distance.

Living here never gets old.

Since my court date I've been through a big old long exclamation point of misery that completely validates the judge's decision. It's not like I thought winning would immediately make life better (because that's not logical, is it?) but in a way it seemed like having that struggle behind me plus having some validation from the judge would make life... better. Seriously. I completely accept that as convoluted thinking but honestly, it's a bit of a let down to realize that the pain is still a constant companion.

I have been just a tad bit more social over the past few days, though. My Aunt and Uncle brought their RV up here and have spent the past week exploring things around here and visiting with us. Saturday night we had dinner with them, Jim and Angie and the girls, Austin and Tasha and Cosette. I did a lot of holding Cosette and took like, zero photos of the gathering. Angie got a few that are really sweet and I know she'll make good use of them. She does a photo calendar for us every year and it's always fun to look back at events like Saturday night. I was atypically social and stayed upstairs for way, way longer than was comfortable. Cosette had a busy day Saturday so she was a little fussy and my mom and I took turns (i.e. stole her from each other) holding her. I sat in some uncomfortable places and was beyond exhausted at the end of the night but I got some great quality visiting time in with the fam. And, of course, had fun with my nieces.

Sunday my "other son" Josh and his wife Megan came up to meet Cosette. Josh is a friend of my sons' from way back when. He's probably in more family photos than I am! Cosette was delighted to meet them. No really. She was. Actually she was still tired from the day before and had three decent naps cuddled up with Nana. I love seeing her grin and be outgoing but I also really love having her squished up against me napping. She likes soft people and I am really soft! I tried several times to get a "framer" of Cosette with Josh or Cosette with Megan and... well, I'll let you see...

She did this with her Uncle Ryan when she met him... wouldn't make eye contact with him. Notice how long her legs are?
 and in this one, you'd think she was focused on the picture taker but, no... she's looking at the tv behind me.

Then there's this one with Megan. I cropped Megan out because she wasn't thrilled with this one. I get it. I've had more pictures of all my chins and all my rolls than I'm comfortable with lately. Cosette was briefly being sweet and smiley and then...

"Just hurry up and take the picture, Nana!". Megan looks lovely in this one, though. Cosette handles picture time like her dad does... "get it over with".  Cosette seems to be developing a little touch of "stranger danger". She took one look at Uncle Bubba (Jim) Saturday night and started wailing. She is very adept at communicating her feelings!

At any rate... this is a good one of Josh and Megan and Cosette isn't screaming so we're going to call this one "success".

My Aunt and Uncle got her a little tummy time play thing - which she hasn't quite mastered yet - and her first little baby doll. We named the doll Eponine. If you're not familiar with Les Miserables, Cosette is the heroine of the story and Eponine is her rival and foster sister, of sorts. Eponine (the doll) is just the right size for Cosette to cuddle. I've posted a half dozen pictures of Cosette and Eponine between Facebook and Instagram. Here's one more because it's just so cute!
She's gotten where she really love skin to skin contact. She cuddles best if I've got a short sleeve shirt on where she can lay her head on my bare arm. She also reaches up to touch whatever bare skin she can. I've been working on teaching her sign language for "milk" which is like making a fist with your thumb side on top and squeezing, like if you were milking a cow. Any time she's hungry I ask, "do you want milk?" and I squeeze her hand in mine. Austin thinks that's why she reaches up to squeeze bare skin when you cuddle her. I don't know but I'd be thrilled to know she's already communicating that way.

Have you ever tried to type with a cat putting his paws between your hands and the keyboard? Not. Easy. Apparently Little Kitty needs some attention today. Maybe he's caught on that I'm leaving him for a few days. My Aunt and Uncle are heading back down South tomorrow and I couldn't imagine a better way to travel than in an RV so my mom and I are hitching a ride and going to spend a few days with Oliver and his parents. I haven't seen him since he was a day old so I am beyond excited to have some good bonding time with him! Pop will come pick us on later on this week. I'm really drained today and battling some nasty pain but I can curl up in Cody's recliner as well as I can curl up in mine and just can't pass up the opportunity to spend time with Oliver without having to make the hundred mile drive to his house and back. I'm still really eager to get both of my grandbabies in the same place but I'm being patient. For now.

How cute is this picture of Austin and Cosette sleeping in the exact same position?

I've been trying to wrap my head around all the things that have happened this year. It's mindboggling how much things have changed! And... it's also weird how much is still the same despite the drastic changes from this year. I'm keeping a "wish list" on my phone of things I want to buy when I finally start getting my disability. The judge said it would take 4-6 weeks for him to write up his decision so I know it will be that long plus however much longer it takes for the checks to start coming. My disability is backdated to March 2013 but it looks like, based on my internet research, that the checks don't start until six months after the date of disability. So assuming it's September or October (and I hope not much longer) before I get my initial payout, I'll have about two years of pay coming. The lawyer gets his chunk, I intend to repay my parents as much as I can and I've got some dental work that I've been putting off that has to be done before I end up drinking all of my food. After that there will be a little mad money for me and my kids/grandkids. Medicare kicks in after two years of receiving disability which would be September/October-ish so I've got to do some research on how that will work and if my current doctors accept it. But honestly, it doesn't feel real yet.

And... I guess that's about it for now. It's been a Pajama Monday for me because today is a "barely functioning" day for me. Recovering from the weekend and resting up for the week and excited to take lots of Ollie pictures! I'll be sure to share! Thanks for reading, love and hugs, y'all!

Wednesday, August 5, 2015

My Disability Hearing and Decision

Spoiler alert: I won my disability case! Most of you have either seen it on Facebook or gotten a text from me by now but for those who don't know... I won! For those of you who want to skip the novel below, that's the gist of it all.

I wanted to jot down as many details as I could remember today because so many of you have been along for this crazy ride with me and because I think it might be helpful to people who are in the process of getting Social Security Disability. Ironically, this is one of the really bad pain days thanks to the post ablation syndrome (PAS) formerly known as evil gut pain. It may have a name but it's still evil. I just tell you that as a disclaimer in case this blog post doesn't make sense or isn't up to my usual (very low) standards of punctuation, spelling and grammar.

Just to recap the process I've been through... I filed for disability using a large national group that specializes in disability. They are one of those advertised groups that doesn't charge unless you win your case. They got me through the initial application and the first two (was it three? #painbrain) denials and then dropped my case. They said I didn't have enough documentation to be able to win. (How do you like me now, first disability lawyer?) That was the lowest of the lows on this journey.

They broke up with me in November of 2013. By this time I was already having the pain from the PAS and was really struggling. I knew I needed to find a new lawyer but I was really (overuse of the word "really" #painbrain) (overuse of parenthesis also but that's typical) I was really anxious about talking to any other lawyers because I just couldn't bear to get another rejection by either Social Security or an attorney. It took me until February of 2014 to schedule an appointment and go meet with my current attorney. I don't want to put his name here because ... I don't know... I'm not comfortable doing that but if you really want to know, just email me. Basically I used a local guy that was recommended by my pain doctor. I knew the pain doctor had a lot of patients who go through the disability process and I figured if they liked him and recommended him they would be more likely to work with him. Winning strategy, by the way.

So I went and met with my guy in February of 2014. At that point all that was left to do was prepare for the hearing. I say, "all that was left" but truly, he went way, way beyond what the original representation had done for me. We met and talked about my case and talked about the dark, scary things in my past (i.e. Jacksonville) and although he said it wouldn't be EASY because of my age and because my profession was sedentary, he agreed to take my case. The scary part for me was that he was the kind of attorney who you had to pay whether you win or lose. I've had that potential debt hanging over my head with no income since February of 2014. That'll keep you up nights.

From February, 2014 until sometime this Spring (April, maybe? I know it's here in old posts) I didn't hear anything else from my guy or Social Security. I knew there was a long wait for a hearing. I knew there was nothing I could do to speed things along. I settled in for a long wait. Then we got notice of the hearing and it was the day before my brother's fabulous wedding in Connecticut and I already had THEATRE TICKETS! for New Yorks three days before the wedding. I mean, let's be real, Bryan and Helen's wedding was truly a once in a lifetime experience for me and I am so grateful to have been a part of it. I can only describe it as "magical" because it was, in so many ways. But too, plus, also, I was going to see WICKED with my two favorite redheads and we had great seats! It was a huge risk to request to move the date but... long story short, we did and it was and I got to not ONLY attend the once in a lifetime wedding but also the once in a lifetime show.

Along the way since Spring my guy and his very sweet assistant (her name is Natalie and always made me picture my friend Mary's gorgeous daughter Natalie although I still haven't met her face to face) worked very hard to make sure we had crossed all the t's and dotted all the i's. Honestly, I don't think if we had gone to the hearing in June we would have been successful. A few key things happened between then and now, including (but not limited to) getting an affidavit from my last ever supervisor explaining how much difficulty I had working, finally getting a diagnosis for the PAS and being able to tie all of that in with all of the other things that make life difficult for me, getting two really awesomely helpful forms filled out by my pain doctor and my primary care doctor. I complained about the 11th hour doctor visits to get those forms filled out but they made a huge difference.

Ultimately what made a big difference from me was having consistency between the doctors' observations and the observations of my two prior employers. I can't even begin to tell you - no, literally I can't tell you because I am not able to discuss the details of my "unintentional sabbatical" from the next to the last employer - but the way certain things were done made my case. M-A-D-E it. I'm not up to digging up old blog entries at the moment but there was a moment, driving in the rain from the unemployment office, feeling so broken and disheartened and hurt, really hurt by the things that had happened. A voice inside of me said, "what man means for my harm, you use for my good." There was absolutely no way then to know what I know now but I know now that what happened was for my good.

I have been completely out of money for a long time. I spent every dime to my name, literally. I don't know what people do in those circumstances, I really don't. My parents have stood in the gap and made a way for me throughout all of this. I mean, lodging, for one thing, cat food and cat litter and people food, for another. They've paid for all of my pain doctor appointments and all of my prescriptions and that hasn't come cheap. Yesterday my attorney told me that having continued to see the doctor consistently even when it was self-pay demonstrated how very real my pain was. Most people are not able to do that and I couldn't have done that on my own. Seriously, this process is way too long. I know why people give up and go back to work and suffer because it is a long process. Buy private disability insurance, people. For real.

Yesterday I went to meet with my attorney and he laid out the case for me and explained what he had sent in his brief (I think that's the right word?) about my case to the judge. There was the stuff I've already talked about and other things... such as a stable work history. Again, I didn't have a choice about working, I had to provide for my kids and sometimes it was only me providing for them (and my parents, again, who helped out UH-lot). There were times when working was very, very hard for me. My attorney found medical records going back to Jacksonville where I was already having back pain. I totally forgot about those things because I've really blanked out all of the things from back then out of my mind. When I left Jacksonville I was seriously in no condition to work but I had to go to work so that I could have a place to live so that Austin could go to school. And I had to keep working, even when it was miserable because I needed to keep Austin in school. Doing the very hard things that I had to do along the way made a difference for me today.

Gosh this is long. I'd do a two-parter but I hate having to wait for details, don't you? Take a break if you need to. I'll wait.

Anyways... so yesterday was a review of the case and practicing answering questions and watching a video of the process with my attorney. We went in early today for more of the same. My attorney told me this morning that there was practically no way I would have a decision today, in fact, he thought it would be 2-3 months before a decision! Ugh. He was going to request to leave the case open so we could get additional info on the PAS stuff because it's a very important link in the chain of stuff wrong with me. He said that if the judge asked us to amend the disability date from my last day of working full time to towards the end of me working part-time it was a very good sign.

I am no longer an extrovert. Pain has made me less enthusiastic and outgoing. I am much more self-conscious and much less articulate than I used to be. I have never had stage fright or had a hard time talking to strangers... I'm the girl who will chat with a stranger in the stall next to me in a public bathroom... but it's harder now for me to make things make sense. (Obviously, five hours into this blog entry). I didn't allow myself to dwell on the fact that I was going to have to talk to a judge before my meeting with my attorney yesterday. I couldn't allow myself to allow that anxiety to build any bigger than it had to be. Even after practicing with my attorney I was really not looking forward to the hearing today. And then as we sat outside the courtroom my attorney cautioned me not to make any jokes to the judge which, if you know my family, you know is hard. Real hard. We're not always funny but we try really hard to be.

So we were called into the hearing. It wasn't like a tv courtroom... it was more like a conference room with a judge sitting behind a pulpit at the end of a long oblong table. My attorney and myself sat at the table with microphones in front of us. The court reporter sat at a desk off to the side. There was a vocational expert teleconferenced in with us.

The first question the judge asked was if we could amend the disability date from the end of working full time to closer to the end of working part-time. I knew that was a good sign but my nerves didn't let me process that quite then. My attorney asked me a bunch of questions about basic things like name, birthday, family specifics like how many kids I have and where I live. He asked me a few - but not many - questions about how my health problems impact my ability to work. I thought I must be doing a bad job because he didn't ask me many questions.

Then the judge asked me to explain about the PAS - post ablation syndrome - in layman's terms. That was difficult because I was discussing stuff that I would normally hide behind clinical terms to make it less personal. I gave him the best explanation I could and apologized (unnecessarily, of course), for the TMI. I actually used the term, "TMI" with the judge. My attorney told him we had requested documents from the diagnosing doctor but had not yet received them.

THEN the judge talked to the invisible vocational expert (via phone) and gave him hypothetical scenarios for someone in my profession asking whether or not the conditions I have would make it impossible for me to work. The vocational expert said that there was no type of work of the kind I was trained for OR of any other kind that a hypothetical person with my hypothetical health problems could do. I was still processing that statement when the judge gave his decision. He didn't wait... he just said something to the effect of finding that I was disabled by the standards set by Social Security and I was eligible to receive benefits and that I was also eligible for medicare. Then he said, "I'm sorry that you're having to live with this kind of pain and I hope that you'll be able to get some relief in the future". He explained that he'd have to write up his decision which should take between 4-6 weeks and they would pay me for disability starting back to the end of March 2013. And we were dismissed.

I heard what the judge said but I didn't fully comprehend it... like I knew what it meant but I couldn't quite wrap my mind around it. I honestly thought I'd never get approved because ... I mean, rejection has happened a lot in my life. And even if I did get approved I thought it would be months down the road before I heard. We had a little victory discussion with my attorney and... that was that! My attorney said he didn't ask me many questions because he knew from the opening discussion that the judge had already decided in my favor just based on the evidence submitted. I say "just" but it was a lot of stuff.

My phone was in the car because we weren't allowed to bring them into the courthouse (never felt so lost in my life!) so as soon as I got in the car I started texting people. I was shaking... partly because of the emotion of it all and partly because I'm for-realz in a lot of pain today and I didn't take anything because, you know, having to talk to a judge and all. I texted back and forth with folks most of the way back to the house and then settled myself down in my nest to rest and recap.

I feel like I should give some sort of profound observation here but I'm still so stunned. It's a game changer for me. In a good way. Thanks for all of your support and encouragement throughout all of this long process! So much love for all of you!

And, right on schedule, Cosette laughed out loud today for what I think was the first time! Happy days are here again! Maybe they never really left...

Tuesday, July 28, 2015

Random Things

This has been a crazy week month year for me! Two grandchildren, a new sister-in-law, a big disability hearing, finally a diagnosis for the Evil Gut Pain... life has just been speeding by me lately. Since I rarely hardly ever post daily blogs any more there are a lot of little details that I forget to share. I thought I'd do that now.

After we got our little Oliver cuddle on Friday morning they had a fire at the hospital! There's some new construction going on and I'm not even sure there were flames but just a lot of smoke and bad odors. Marquee and Oliver were evacuated from the mother/baby wing back to the labor and delivery room which they were sharing with several other mothers and new babies. Can you imagine being less than 24 hours from giving birth and having to be squished in to some ad hock maternity ward? Nuts!

I had my final doctor appointment before my disability hearing today. I've re-written that sentence five times trying to make it make sense. I had my final doctor appointment today before my disability hearing. I had my final doctor appointment today before my disability hearing on Wednesday. Confusing. English is hard. I mean the appointment was today and the hearing is next Wednesday. Obviously, I've lost my mind so... anyways... Today's appointment was to get a specific form filled out by the pain doctor. They were mostly great and I feel like we've got much more medical documentation lined up and that makes me feel better. Ultimately it just comes down to one man's opinion based on a few minutes of knowing my history and it could easily go either way.

I had one of those "duh" moments in the doctors office. You have to give a urine sample for drug testing because that's a huge hairy deal with a pain clinic. No pee, no meds. Because I'm not limber any more I get one of those top hat things to catch the specimen. Today I went and completely missed that gigantic container. I told the nurse and she told me to just drink up and try again in a few minutes. I had a gatorade that I was drinking and I chugged it. Got my specimen but then had to pee so bad on the way home I thought I would burst! Aren't you sorry I'm not daily blogging because you would have missed out on that little nugget.

I made tabbouleh today. I have mentioned before that I use the Near East brand that has the bulgar wheat and the spice mix. You just add boiling water and let it plump up and then add lemon juice, olive oil and tomatoes - or whatever veg you're putting in it. I forget how much I love it. I found some orange tomatoes in the store and that inspired me. The orange ones are less acidic.

Speaking of food... Pop made hamburger helper for dinner tonight and it was so good! Comfort food never fails. I've got pineapple upside down cake for dessert. I'm allergic to pineapple but the less fresh, the less it bothers me and this was from canned pineapple. I'm sure I'll survive.

Now that I have a smart phone I have been taking advantage of Siri. I couldn't figure out how to set an alarm for this morning so I asked siri. I was driving home from Gainesville this morning and I needed to text Austin to tell him I was on the way home and I just got siri to text him. I haven't figured out how to get her to read me the response to a text but I'm sure there's some way. And just now I asked her to remind me to take my meds at 7pm. I mean, she's a middle aged woman's best friend. Instead of having notes everywhere I just put it on siri!

Also... how have I lived all of my life without emoji's? I'm that annoying person that uses them in combinations. Sometimes I just really don't have the energy to articulate so a smiley face comes in handy. Or a frowny face. Or a red face.

I have two super cute videos to share and I'm not great at inserting links but I'm gonna give it a go.

The first one is Cosette watching herself on my iPhone. She smiles whenever you say the word "pretty" or the word "princess". She's really my girl! And Jamie's cousin! We took two videos of the same thing, one on my phone and one with my digital camera. This is the one from my camera. Obviously because you see the phone. #painbrain - the struggle is real.

Some people have asked about the red mark on her forehead. It's called a hemangioma and it's basically a cluster of blood vessels under the skin. It's not uncommon and it is supposed to go away over time. I have them in various places and the dermatologist said it's nothing to worry about so I'm going on that as a second opinion on Cosette's hemangioma. I've had mine for awhile and they haven't faded or gone away over time but... whatever. I used to have a huge nebulous something or other, I forget the name, in the middle of my forehead. I had it most of my life. I had it removed in September of 2008 which is why I have a little scar in the middle of my forehead now.

Another amazing kid video... Oliver holding his pacifier in with his own little hand while he was still in the hospital. His dad used to have three pacifiers at once... he held one in each hand and sucked on the other one.... and he turned out ok so I'm confident Ollie will as well!

By the way... Oliver's mommy has already lost most of her baby weight. I'm still trying to lose my baby weight from when I had Austin. Some folks get all the luck.

One more little tidbit that I know you just can't live without... I used one of those Pedi-egg things to get the dry skin off my feet. I'm a half inch shorter now.

And with that... I'll say goodnight, farewell and love and hugs!

Monday, July 27, 2015

Introducing Oliver Joel!

Oliver Joel Espericueta Sauls

He's here! My much anticipated Little Peanut arrived on his due date, Thursday, July 23rd. He weighed 6 lbs, 12 oz and was 19 1/2 inches long. For the sake of comparison (which, I'm sorry, it's impossible not to!) Cosette was 6 lbs, 9 oz and was 20 1/4 inches long and was born 6 days before her due date. So she was thinner and longer. Cody and Austin were both 6 lbs, 13 oz and were (I'll have to check the baby book to confirm) 19 1/2 inches long. They were both born about ten days before their due date.
So basically, Oliver was the same size, give or take an ounce, than his dad.

Oliver's birth story begins on Friday, July 17th. Marquee had been having consistent contractions for about four hours when they called and said, "hey... just so you know... don't rush down here or anything..." and so we waited. And waited. And waited. And the contractions stopped. Then Saturday came and contractions started again and I got the phone call again and then waited... and waited... and packed my overnight bag... and rallied the troops... and brought Tasha and Cosette over as a distraction... and Austin got off work early... and we waited... and the contractions stopped. So the overnight bag stayed packed and when I needed something out of it I would use it and then put it right back in the bag. I was ready. So ready.

Just for proper perspective, Cody and Marquee live almost exactly 100 miles South of us. It's not a bad drive... but the shortest route takes us through Atlanta traffic so the possibility of getting stuck in traffic plays into every possible pending birth commute. The hospital is another... maybe 20 miles or so?... from them. That was always a consideration in planning our "New Baby Vacay".

On Wednesday I got another, "hey... just so you know... don't rush down here...." phone call. Marquee had a massive, unrelenting, extremely painful contraction and had gone to the doctor to check out the old dilation situation. The doctor determined her to be in early labor and predicted she would go into labor in the next 4 to 18 hours. I think she was dilated to 2-3 at this point, if I remember correctly.

More perspective: it's boring and redundant to talk about but I do have this chronic pain issue and I have bad days and worse days and hardly ever have good days. Being in pain, for me at least, includes such fun side effects as dizziness, nausea, disorientation, anxiety and so forth. I feel ok about driving around here sometimes, most of the time, probably, and I'm pretty sure I could rally in an emergency. I WANT to believe that I could easily make the trip down South on a less bad day if I'm well rested and medicated enough to be able to drive but not so medicated as to be a risk to myself and other drivers. That was also always in the back of my mind while waiting for THE CALL. Would I, should I, could I make the drive down?

So Thursday morning, July 23rd right around 6am, I got another, "hey... just so you know... don't rush down here...." phone call from Cody. Marquee had been having contractions since 2am and her water had broken, at least part way. They were on their way to the hospital and wanted us to wait until she had been checked at the hospital before we came down. How many of you out there are thinking exactly what I of hands... ??? So you understand why I said to myself, "if her water is broken there's gonna be a baby one way or another in the next 24 hours" and made sure my bag was packed, rallied the troops, arranged for my sister-in-law to bring Tasha and Cosette over to pet sit for us, talked Pop out of playing golf and into driving us down there (because... I just couldn't.) and after dropping Austin off at work headed on our merry way. Pop, Mawmaw, Oscar and me off for an adventure in birthing babies!

I sent a text to Purple Michael letting him know it was baby day. His birthday is the 24th, the next day, so he said Marquee needed to hold off for the next sixteen hours so the baby could be born on his birthday. Pop said, "tell him she'll hold off on the baby for sixteen hours if Michael will hang on to a kidney stone for sixteen hours". Michael wrote back, "PUUUUUSSSSHHHH Marquee, PUSH!!!!".

We made excellent time down to Riverdale with hardly any traffic. We stopped at the Chic-fil-a Dwarf House to get Pop some lunch, Mawmaw a shake and me a chicken wrap (which I knew would be good for lunch). We dropped Pop off at Cody and Marquee's house so he could dog sit for Oscar and Sammy and me and mom headed down to Fayetteville to the hospital. We got a few miles down the road and realized we had Pop's cell phone in the car still so I turned around, Dukes of Hazzard style and headed back to the house to drop off the phone. They don't have a home phone (who does these days?) and we didn't want Pop to be stranded without a vehicle or a phone. And then quickly, quickly back on our way to the hospital.

Oliver was to be delivered at Piedmont Fayette Hospital (Medical Center, whatever) which was a much, much larger hospital than the one were Cosette was delivered. There were no handicapped places left open and practically no parking places at all. Fortunately they have volunteers who drive around in golf carts to ferry people to the hospital. This was much appreciated as there was so much walking inside the hospital that I wanted to save every step I could. We found our way to the waiting room, Cody came out and got us and took us back to see Marquee who was very calm courtesy of her brand new epidural. I want to say that at this point it was 11-ish but I'm not really sure.

After awhile we went back out to the waiting room to sit with Marquee's grandparents and aunt and with Cody's dad and stepmom. And there we waited for what seemed like an eternity but in the scheme of things, was really not that long. I played a gazillion games of sudoku on my phone, posted on Facebook, texted back and forth with people I was keeping in the loop (Austin, Tasha, my sister-in-law Angie, Purple Michael) conversed with folks in the waiting room and... waited. We were updated fairly often either by text or by Cody coming out or by Marquee's mom Donna coming out. Marquee got stuck at about 7 cm so they gave her a little pitocin. Then she was almost completely dilated but his chin was in a bad position so they were trying to move him into a better position.

The funniest moment of the day was when somebody came out and said that they were almost ready but had to get the baby in a better position and Marquee's grandfather came out of a semi-nap state and said, "they're waiting for the baby to get his shoes on???"

Once I knew they were pushing I was crazy anxious. You might remember that when Cosette was born, whenever Tasha was ready to push her mom, dad and myself camped out right outside the door so we could hear what was going on. Marquee insisted that we would NOT be sitting outside the door while she was pushing. They even pointed me out to the nurses on duty and gave them instructions not to let me hang out in the hallway. Eh, whatever. Nana's gotta do what Nana's gotta do, know what I mean?

I got up to go to the bathroom although I was certain that Cody was going to come out with an update while I was gone. I took my time in the bathroom washing and rewashing my hands and staring at myself in the mirror because... bored. When I walked back toward the waiting room I could see Cody there and sped my limp/walk to a limp/gallop. Oliver had been born shortly before 6pm.

Marquee's Grandpa&Grandma, Mawmaw, Aunt DeeDee, Marquee's mom
My pain at this point was crazy high but I had to see that baby on his first day of life. He and Marquee were both running a fever so they took him to NICU for some tests. I wanted to stay to see him but if they were keeping him overnight in the NICU and we weren't going to be able to see him anyways, I wasn't going to put my body through any more abuse. Cody's dad and stepmom left, they had dogs at home that had to be let out of their crates. I debated. Pop was ready to be relieved of his pet sitting duty. We were tired and hungry (that chicken wrap was awesome but it had long since worn off). We got word that we would be able to see the baby in an hour or so and I hit the vending machines for a coke and sun chips for dinner for me and Mawmaw. I never drink coke and rarely have caffeine but desperate times call for desperate measures and they don't sell wine in the vending machines.

Sammy meets Ollie
After a lot longer than we expected, we got word that they were moving Marquee and Oliver to their room. When I announced that they were on the way to the room me and Mawmaw got up to begin the loooooong walk to the room and... everyone else in the family got up and walked with us. As it turned out they weren't in the room yet so we squatted there until they wheeled them in and then... got kicked out of the room so they could get her situated and try to breastfeed. At this point it was about 8:15 pm.... past my bedtime.

So it's me, Mawmaw, Marquee's mom and dad and Aunt DeeDee and Grandma and Grandpa and Cody and Marquee's friends David and Craig all out in the hallway outside the door and I'm practically delirious from exhaustion and pain. It was almost an out of body experience, overwhelming all of my senses and then... I heard Oliver cry. I might not have heard his first cry but I definitely got to hear him cry on his first day of life and it was the sweetest sound!

Sometime around 8:30 we were finally able to get in to see Marquee and Oliver (and Cody, but we had seen him off and on all day). I called dibs so I got to hold him first. I said to him exactly what I said to Cosette the first time I held her, "I'm your Nana... " So... pictures...

He was super easy to calm. If he started to cry all I had to do was touch his cheek or cuddle him and he would immediately chill out. So much like Cody who was/is the calmest of my sons.

And then Cody walked me and mom down to the exit and since the golf cart volunteers were long since gone, we made the long walk back to the car. By this point my feet were numb and all my joints were swollen and hot and ... my mom doesn't drive after dark... so I just had to gut it out and make it back to Cody's house. I ate a donut and a bagel that I scrounged up in their kitchen and settled into their recliner in the office to go to sleep. (I always sleep in a recliner, by the way, it's my most comfy position).

The next morning we got up and drove back down to the hospital so Pop could meet Ollie. Pop told him he owed him a golf game - once he was walking. I got some quality cuddle time and took lots of pictures. Then we drove back to Cody's house, picked up Oscar and made the drive back home.

I remember being surprised after Cody was born that although it was great to have two kids at two different ages to enjoy, that they were going to both need me at the same time! I felt woefully unequipped then and I feel similarly unequipped now. There are five people in this world who wouldn't be here if I hadn't been here first. They live in South Carolina, Riverdale Georgia and Cleveland Georgia. That's a long way for my heart to stretch! Having two grandkids three months apart is something I never could have imagined for my life. It's sweet and precious and rich and amazing and I feel so incredibly blessed and so incredibly unworthy. I will spend the rest of my life marveling at this amazing gift and I will spend the rest of my life doing my best to make Cosette and Oliver know how precious they are to me.

More pics... love and hugs, y'all!

Tuesday, July 21, 2015

Finally A Diagnosis for the EVIL Gut Pain!

Approximately two years ago I started having recurring abdominal pain, commonly referred to here as "Evil Gut Pain". For awhile, other than mentioning it to my pain doctor, I had no way to get a diagnosis for this pain. This happens for people without "affordable health care". In states (like mine) that didn't expand Medicaid, some people (like me) just have to do the best they can to deal with the great medical unknown. Obamacare is about as helpful as unicorn farts in my world.

Despite having access to medical care through a local charity - Caring Hands Clinic - if you're looking for a charity to donate money to, these people do a lot of good for a lot of people who fall in the cracks of medical care in our county - the clinic is not set up to diagnose illness. They treat chronic illnesses such as diabetes or high blood pressure. They weren't able to do much for my Evil Gut Pain but they set me up for an ultrasound through the local hospital system to possibly get
a diagnosis.

You might remember somewhere around this post here, back in February, I found out that I was approved for charity care through the hospital system. This meant that I had a clear path to a diagnosis of the Evil Gut Pain. Clear, easy, concise, affordable... with my awesome Primary Care Doctor (who is covered under the charity care) acting as "contractor" I  would know exactly what it was in a very short time... but.... not. Sidebar: reading through those old whiny posts I wondered, "how in the world do people stand reading my blog? I'm a whiny mess!".

Gradually, through a long process that included an ultrasound, xrays, an MRI and a CT scan, we have eliminated all the big, hairy, scary problems that might be causing me pain. With every test I would be delighted, of course, that there weren't any big, hairy, scary problems but really frustrated to not know why the pain is so bad at certain times. The one really consistent factor with the pain was that it was cyclical, at it's worst at times that coincided with the normal monthly woman stuff. Due to an endometrial ablation in 2008, I don't have a normal monthly thing happening but I do ovulate and have the normal PMS headaches and such so even though it's not normal, it's MY normal and the pain was happening at those particular times.

My awesome Primary Care Doctor decided we should do the full workup with a GYN so he referred me to a guy who was also in his medical system (and therefore covered under charity care). I saw that doctor in June. Even though I had already had an ultrasound (that was terribly inconclusive) he wanted me to go to his main office and have an ultrasound done by his ultrasound tech, who he had great faith in... not that the other ultrasound wasn't GOOD but he had a few specific things he suspected and wanted to have his tech check for those.

The thing about me and pain is that I detest leaving the house, ever. I am either already in pain or anxious that pain will start while I'm out and about so I just stay where I'm most comfortable, in my nest in the Whine Cellar. For that reason I drug my heels about scheduling the appointment at his main office because that meant me having to go somewhere.

I went today and had another ultrasound that was breathtaking painful but conclusive. As he suspected, there is a complication from the endometrial ablation I had in 2008. Basically, without pushing the TMI factor too high, the ablation scars the inside of the uterus so that the usual lining that accumulates every month in preparation for a potential baby, doesn't accumulate. The lining doesn't build up so there's no period to get rid of the lining.

 What has happened in my case, there is a spot where the ablation didn't scar the uterus enough to stop the lining from building up but the scarring from the rest of the ablation doesn't allow it to come out. This has created a pocket of fluid that increases and decreases depending on what time of the month it is for me. It's this pocket of fluid that is causing the pain. When I had the first ultrasound it was at a point where the pocket was not full so it appeared as a ovarian cyst. Today it's fuller which - bad news, it hurts - but good news, they could tell what it was.

There are two ways to cure this problem - a hysterectomy or menopause. The size of the pocket is not large enough for my GYN to get charity care (or most insurance companies, as it turns out) to approve a hysterectomy. They typically just treat it with pain meds for the days that it is particularly painful until such time that the pain gets too great to handle. Since I already have a narcotic agreement with a pain doctor, the Gyn will defer to him to handle the pain management on this condition.

The main thing is... I know what it is and don't have to fear something potentially fatal (and I did there for awhile!) The GYN completely validated that this problem IS painful (as opposed to my previous diagnosis of "chronic constipation", which I'm sure is painful but not taken too seriously, I'm afraid) There's a treatment plan in place and I now know how to handle the Evil Gut Pain when it happens. AND it's one more legitimate cause of chronic pain that will help my disability case as it could/would keep me out of work for several days a month in addition to the days that I would be sidelined by migraines or back pain or fibromyalgia pain and exhaustion.

Insert many happy, celebration emojis.

Love and hugs, y'all!