Friday, November 30, 2012

Bye Bye NoBloPoMo & #201

So I didn't make it every day this month. I missed a 15 day chunk before and during Thanksgiving week. I got sick and then overwhelmed with travel. But that's okay. I haven't posted this much in a long time and I enjoyed pushing myself.

I think this is indicative of my life now too. I may not be able to do everything I want to do, when I want to do it, but I can push myself to try and accept that I won't always get it all done in my time frame. I wrote exactly 5 words in NaNoWriMo. The start of an outline. There was no way this was a good time to add that to my plate. Maybe next year, or the year after. It's not a good idea to do this when you have final exams looming or week-long travel plans. Whoops.

What I did get out of NoBloPoMo is the urge to blog again. I only get less than 10 readers a day but that's okay. I think I found my way back to blogging my thoughts out again. Since I committed to blogging all of November, I started a few different posts that I'll finish later, and I found drafts from years previous that I want to update and post.

So even though I failed at blogging every day this month, I'm okay with 'losing' this time. It was an important lesson for me to at least try.

Oh, and this was post #201 for me - here anyway. I have many others tucked away in my archives from way back.

Thursday, November 29, 2012

Dating With a Disability

For ages, even before I got sick, I said I wanted to start dating again. Sometimes I put my feelers out there just to check on what I might reel in. It's never pretty. I have an online dating profile up - for now. I deleted many replies there, texted a few back and forth, and never met any of them. Well, I planned to meet one but got blown off THREE times and had to put him in the deleted pile. I've been divorced for...almost 4.5 years now. I was still wrapped up in my own wishful world of the past. Then I got sick. Nothing was happening in my dating world after I got sick & I had to focus on getting better.

But they say that when you're not expecting it, it'll come. I think I may be open to it, but not actively looking for it. There is one potential. I just need to decide what I want to do with that potential, and if I'm ready. The major issue I'm having, outside of the lovely medication weight gain (seriously 40 lbs since May, wtf), is how or when to tell someone I'm disabled. I'm pretty sure seeing my handicap plates pull up on a date is going to give something away. If it's winter and snowing or icy, I have a cane to announce that I have some kind of issues.

So I obviously have to say something before a first date where it'll be obvious. I'd rather not spring it on someone as a surprise - like the guy who says he's 40 and shows up as 50. But I don't want to get into it on my dating profile and attract any weirdos either. So at what point between the first few emails or phone calls and a first date do I address my disability? I have mobility & strength issues. Not super obvious ones, but noticeable in certain situations. Something like a restaurant booth or bar stools are issues for me. If I sit too long I have issues standing up because my muscles stiffen.

Granted, if the person is someone I already know, then this isn't exactly an issue since they see me in person. But even then, they may not know what my issue is or how my polymyositis affects my daily activities. They may wonder about sex and not know how to ask if I'm willing and able! For the record, yes to both. I'm disabled, not dead for goodness sake. There might be mishaps or minor modifications but it's supposed to be fun, not some over-thought, be-careful-or-I-might-break-her situation.

So how to address awkward issues of my disability without going into my long, insane illness? I don't know. I'm going to have to think about it if I don't want to be bombarded by questions all about my journey on a date. I'm also hoping the issue of sex and my disability will weed out those too uncomfortable to talk maturely about sex. Something I despise. It's just sex. Really. If you can't talk about it like an adult, and not just "What's your fave position", we're so not having it.

I just wonder if I spring the disabled thing on them too soon will it freak someone out, or if I wait until we meet do I seem sneaky and untrustworthy? Thoughts?

Wednesday, November 14, 2012

Learning How to Live

Last year around this time I was an in-patient in rehab at the local hospital, my first of two rehab stays. I was relearning how to walk. I couldn't raise my arms to shoulder height. I was on oxygen levels of 8, which was down from who knows what level while I was in ICU. I coughed so hard throughout the day that it scared people, and hurt my throat. Not sure how I didn't get broken ribs! I wasn't able to handle my own personal care in the bathroom. Showering was a HUGE ordeal, but the best thing to happen to me each week. Trust me, those shower caps to wash your hair in the hospital just make things worse. But I was grateful. Grateful to be alive.

The ICU... I don't even know where to start. It's like a mental block. It was boring with a lot of reality television. I couldn't move, get up, eat, pee, or breathe on my own. Life sucked, but I was alive. Even when I wondered why and what was the point of having made it - usually when someone else was wiping my ass for me - I was alive and my son still had a mother. Eating real food, getting tubes taken out daily, going to the bathroom (with help), all meant progress. But progress was scary. I had to learn how to live again.

I cried a lot in the wee hours of the morning when I'd wake up. I'd see the picture of my son on the wall. It was meant to motivate me, but sometimes it made things worse. I'd worry how everything was affecting him. Whether waiting until I woke up for him to see me was the right choice. Whether this was going to permanently scar him. Whether I'd ever be able to be a parent to him again, or if he'd have to go live with my ex-husband forever.

Being sick without knowing the outcome is scary. Everything changes. I didn't want to let other people see me break down. I wanted to be strong and brave - even though I almost died - I didn't want to scare people. I don't like people thinking I'm weak. My body is a wreck but I'm not weak. Things are so different now.

Tuesday, November 13, 2012

Who Moved My... Everything!

Tonight on Parenthood, Kristina, who is fighting cancer, has her mother in law in her home helping her after her cancer surgery and subsequent chemotherapy. A strict diet and physical restrictions keep her from doing her daily activities. She calls her husband to have "a moment" where she freaks out. They really hit it on the head how it feels to have other people in your home to help you, and accepting help. I have so been there.

Losing control of my entire life and letting other people take care of everything while I was in the hospital was really hard. Letting other people take care of my son was the worst. I was so excited to come home. It was progress to getting better. I was so grateful to everyone that kept things going for me while I was sick and for all their help. I could've never gotten through it without them.

Then I started looking for things around the house. My kitchen was rearranged, which is why I had to laugh when Parenthood noted the tea had been moved on Kristina. It it's so true. People move things thinking it'll be easier for you. In reality, when you're sick - or recovering, you want things the same. You want the comfort of knowing things are like before you got sick. It took a while before I got it back together the way I like it. That was due to not being able to lift my arms over my head. My closet, on the other hand, was a HUGE relief. I was actually able to find things! When I'd gotten sick and my best friend came to help, she totally organized everything in there.

Things are definitely scattered and cluttered around here lately. It's especially hard when both my son and I have had colds on top of my disability. I could use a good organizer and helper, which my mom totally did when she visited, and boy do I miss the cleaning people! But whether my house is clean or cluttered, I'm surviving and I'm not in the hospital twice a month like last year. I'm thankful that even though my life isn't the same as before I got sick, it's still better than it was a year ago. I'm the one in charge of my life and my son is home with me. That's what matters now - even if I don't know where I put the remote control five seconds ago!

Monday, November 12, 2012

Tired and Stressed

I'm in pain. My hands and body hurt. Last time I got sick this happened and my inflammation levels went up enough to make a difference. It hurts to type. Not good for getting things done. I'm exhausted. I just needed to do my quick NaBloPoMo post before going back to sleep. Oh, sleep....

Sunday, November 11, 2012

Over Scheduled

So maybe taking on NaNoWriMo this year was a huge error in judgement. How many words do I have right now? Zero. I should have just over 18k. Whoops. I mean, it's not like I'm sick, or my kid is sick, or like I have exams & papers, or that I'm way behind in working. Oh, and that Polymyositis thing? It's flaring up with pain because I'm sick and the weather is jacked up here. I miss AZ heat. Then there's Thanksgiving and travelling. How I'm paying for that I don't even know yet. More working and praying I get time for homework. I'm actually just praying this chest cold doesn't blow up into something worse like last year. I'm having some anxiety about this right now. So much so that I can't sleep, which of course is bad when you are sick. I forgot how much I hate coughing. If I never coughed again, I'd be fine with that.

So, yeah, I think I over scheduled this month.

Saturday, November 10, 2012


Because being sick what I need right now in the middle of everything else going on here. The boy is sick and coughing. Scared me with a fever of 103 degrees and barely eating or drinking anything. It had gone up from 102 the day before. Thankfully, we got in to see the doctor, but of course by the time we got there the Tylenol kicked in and the fever was down to 99 degrees.

So now I wait out his coughing for up to two weeks, and I feel the coughing coming on myself. My child is good at sharing. We'll see how this goes. I'm supposed to be in IL the week of Thanksgiving.

Friday, November 9, 2012

Working Out with Slushy Magic

First, to cover my legal behind, I wasn't paid or given this product - I purchased it myself - and all opinions are my own after having used Slush Magic for a while.

Sometime during my illness, I ordered Slushy Magic for my son. Said son had been begging for this for months and I finally gave in. When they finally came, he was living with his dad while I recovered. So I didn't actually get to see them in action until recently.

Let's just say I'm getting my arm workouts in making him these slushies in a cup. Holy cow. I need a paint can shaker to get these things to make slushies. I think I'm filling them too full with the beverage. I'm not sure.  I didn't actually read the directions because, really, how hard could it be to make slushies? Yeah.

So here I am, at least twice a week shaking two cups to get enough slushy to make it worth it. One cup just doesn't cut it and isn't worth the work put in to make it. My physical therapist would be proud.

Wednesday, November 7, 2012

How To: Child Support in Illinois

I noticed that a lot of people get here by searching for how the government in Illinois is holding my child support. Whether it's your child support being held by the state because of their error, or by some other government agency because you haven't paid, hopefully I can clarify these posts about my struggle to get the system to work. No one should ever have to go through what I did to get their child support. When two government offices can't work together, don't communicate with each other and ignore their client (the parent) that's when you know the system is broken. Hopefully it's improved since I went through this!

First, the website for child support services in Illinois is here:

The phone numbers and websites for applying and asking questions are located there. The problem is that you sit on hold for hours if you have a problem that the automated system doesn't answer. I easily sat on hold for 1.5 hours waiting for someone to pick up. How can someone, who works outside the home, tie up their phone line for this long? They can't. Either they don't have access to a private phone line or they can't just have their phone off the hook on hold that long. I know when I worked in an office, I had meetings to go to and other inbound and outbound calls that couldn't wait. So what is the child support office doing to fix this? They don't have hours outside of business hours so that people can call after work or on weekends. Most single parents can't just take the day off for phone calls.

Once you get through, assuming you can wait that long or make it through the automated system without getting hung up on, you want to ensure you're speaking to someone who understands your needs and how to get things done. Go to your local child support office if you don't already have a child support order in place! You'll get an appointment to discuss your options and it sets the process in motion to get child support payments started. Whether your the custodial parent or not, visitation and child support are not mutually exclusive in IL. Your children's non-custodial parent has the right to see their child whether they've paid child support or not -- barring other legal issues of which you'd need to bring to a courtroom setting.

If you're in a situation like I was, where the state didn't communicate with the federal government agency, make sure you ask for a supervisor! They'll claim it'll restart your whole appeal process, but if you're not getting paid your support and they can't tell you what the problem is even though they claim to have sent the notice -- talk to a supervisor. Insist on it! Sit on hold for hours if you have to because otherwise they won't do a thing but let it sit on their desk and keep putting you off rather than fix the problem. Things like calling a government office when it clearly states they don't take calls on Wednesday. Saying they sent the orders electronically, but actually they didn't and had no idea what the difference between mailing and electronically meant.

Try to use the system as best you can to make it work for you, but don't give up when it fails. Stay on top of errors, call when they make a mistake and follow up repeatedly if it's not resolved. If they're not sending you the payments or withholding correctly, get it fixed whether you get or give the payments. Eventually it'll catch up to you if you don't.

It's a New Day, A New Dawn

I can't yet put into words how I feel about the election right now. I'm so thrilled President Obama won again, and even more so because I'm the minority Democratic voter in my family. So this feels so good to be able to celebrate another four years when it was looking a little scary there for a minute, and my whole family was voting Republican around me. Plus, those that are bitter and were doomsday dramatists during the campaign need time to settle down. Hee hee. I'm still doing a happy dance in my chair though.

I'm volunteering for my son's field trip to a fire station today. Then I'm probably volunteering with the PTO to help with the school fundraiser shipment - directing parents to their stuff. No lifting or carrying though. I hope I can do it all. We have dance class after all that. I have a feeling I'm going to feel like garbage on Thursday. I have so much going on right now. I'm trying not to stress out, but I am. Plus, the holidays are coming.

I'm just trying to get through another month. I just need to make it to January. I'm not even trying to think about disability anymore. If I have to go to a hearing for another review then I'll get a lawyer. Otherwise, I'm struggling, freaking out and struggling to get by. Everyone needs help of some sort this time of year and all the outside resources are stretched thin. It just really sucks right now. Sleep is scarce because my brain never stops.

On a happy note - HOORAY PRESIDENT OBAMA!!!! Woot! Woot!

Tuesday, November 6, 2012

What a Difference a Year Makes

I wrote Other Mothers on 10/13/11, and then I almost died a couple weeks later on Halloween. I even mention I was feeling sick and Noah was hospitalized for breathing problems that day.

This year, I'm still searching for my identity, but on a new level. Now I'm a disabled single mom. Now I am the room mom, and participate in PTO, but I'm also still the late-sometimes-misses-school mom. At least I can say when the boy misses school, if we're not sick, that I do homeschool type stuff with him. Or at least make him finish his homework from the last time we missed a day. I'm still considering home school for next year.

This year, things are different. I still wonder if I want to keep living here in this town or move to Milwaukee. I just don't know how I feel about bumping into people I know, or that my son goes to school with, all the time. It just freaks me out going somewhere and oh hey, there's so and so from wherever. It also means not making waves with anyone because it'll come back to bite you in the butt later.

This year, I'm just doing the best I can to stay above water. My disability has changed everything and I'm only just about six months out of the hospital on a continuous basis. I have so much to be thankful for, but so much to figure out. I'm also still waiting on my disability appeal, which sucks. Who knows when that'll happen. If it gets denied again, I'm going to have to go to a hearing about it - and get a lawyer. Meh.

This year, I'm just going to be thankful for being alive and my son being home with me.

Monday, November 5, 2012

How to Plan for the Unexpected Hospitalization or Long-Term Illness

I've been thinking about how things were when I first got sick. Likely because it's been one year since I woke up last November, but I actually started getting sick when school started in August/September. I just ignored the signs until I was in the ICU and in a coma on a ventilator. I think about my son coming to see me in the ICU with all the tubes and machines beeping around me. I don't even try to think about what was going on with my son while I was in the coma, or what he was thinking when he saw me so sick. It's pretty much a blank spot in my life. It upsets me too much.

Recently, a classmate at my son's school had her mom end up in the hospital with a serious illness. Her father had to stay with the mother for various reasons - one being he's disabled himself. They didn't have an emergency plan in place for someone to care for their daughter. She stayed with another mom from the school for almost a week. It was like watching what everyone went through when it was me, but I was on other side this time.

Honestly, I thought I had a plan in place if something happened. I had my ex-husband's number in my phone as the ICE contact. I thought everyone knew to call the ex if something happened, or had his number, so he could pick up our son and care for him. I was very wrong. I don't know how it all fell apart, but my cell phone battery died, and it had a screen lock on it that no one could get past anyway. For some reason my sons's teacher claimed she didn't know how to reach my ex, even though the school sends mail addressed to him to my house, and it's all over the EMERGENCY contact card. I can't even begin to tell you how pissed I was to hear that when I woke up - among other irritations.

I have a better plan now. I have to have a plan after seeing how quickly things can go wrong. As a single mom, it's not like I had a partner that was at home calling everyone to update them. No partner to watch my son while I went into respiratory failure and almost died. I was lucky enough to have my mom in town when they admitted me to the hospital initially. Ironically, I texted her that they were about to intubate me. But on a normal day, my son goes with me almost everywhere. He would've been with me that day too. I missed his Halloween party instead.

Everyone needs an emergency plan for their kids if something unexpected happens. Everyone plans for the future for their kids if they die, but what if you're alive but in the hospital long-term? Who cares for you children? Especially single mothers! Who would call your ex or your family to come care for your child. Do you have a living will or a medical plan in place? Do you have someone to handle any paperwork or make phone calls? Does EVERYONE know how to reach the care provider you want for your child so they can get your child? If you lock your cell phone, do you have an external method for family or hospitals to reach your contacts?

Create a phone list that you share with friends and family. Make sure everyone in your circle understands what you need them to do if you can't communicate. Make sure everyone knows where your child is supposed to go and how to reach those people. Have your child's insurance information and a signed document giving the caregiver permission to care for the child -- even if it's your ex! Single moms, be sure to add the caveat that it's only until you're well. Custody battles in court are ugly without documentation.

It sucks to think about your kid being cared for by someone else. I know because I lived through it and didn't know if he'd be able to even come home again. Sometimes it's the only option. Friends can't take care of your child long-term. They can't. It's not realistic. Legally or emotionally, it's not a good idea for your child. Even if you have family "issues," sometimes you have to suck it up and let them help you (unless it's dangerous obviously).

So get your phone tree in order, put together your child care documents, and make sure you communicate with friends and family what you need done if there's an emergency or you're hospitalized long-term. You'd be surprised how much you think you have in place, only to find out it's really not. By then it's too late.

Sunday, November 4, 2012

My dreams

I left my heart and dreams in Arizona. I cry for what should've been and what was lost. Love, innocence and family all got swept away, much like the rains in the washes during monsoon season. I wonder if my desire to go back comes from the memories of what could've been rather that what it really was. Was I really happy as I seem to remember? Wasn't I miserable alone? Wasn't my need to stay there the reason for my unhappiness? I'll never know if the choices I made would have changed anything. I only know how things turned out in reality.

I need to go back. I need to see the Saguaro, the canyons and the desert landscape. Memories of the farmer's market in the barn and the hikes through the canyon haunt me. Will it be the same as I remember?

Sitting on my patio as the sun came up, watching and waiting for something new. The new dawn breaking with pink skies, already a comfortable 75 degrees and a cool breeze. Soon to be a scorching 100 before noon. I miss it. I miss everything.

Remembering. Needing to remember. Maybe the bad will come back with the good when I go back. Was the bad only because I was alone? My heart was left in Arizona. I don't know if I'll ever get it back.

Saturday, November 3, 2012

Random Dance Stuff

I've decided I love my son's dance class. It's not a tap and ballet class, which are filled with all girls here, but it's a hip hop/pop and lock dance class and he loves it. I also enjoy the music while I sit and read a book through his class. Ironically, the teacher at the studio and I went to the same high school, yet ended up here in small-town WI. So I know the Chicago house music that he plays. I'm sure we know the same people back in IL, but I haven't played the who-do-you-know game yet.

I'm just hoping I can afford to get my son into the next session in January. He loves it so much and he's really good at it already. I can't wait to see their first production around Christmas. He always comes out of this class all excited and happy. I wonder if they have someone doing their social media marketing. Hm, maybe a potential bartering situation here??? Stay tuned for the outcome on that.

In tomorrow's news, I think I have a date coming up soon. Should be interesting.

Friday, November 2, 2012

Only Day Two of NaBloPoMo

I have two minutes and I have to get my son to his dance class. It's a hip-hop/pop & lock class. Tonight is a special rehearsal. We've been on the go all week. I'm totally wiped out and I have about a million things to do. I'm getting two hours of quiet time while he's in this class tonight, but I'm feeling lazy about driving home after dropping him off. I suppose it wouldn't be so bad if I didn't have to find parking down a one-way street and then walk in the cold, which hurts my lungs, to the studio. I also have to go up and down a flight of stairs which doesn't help my breathing or my mood. This building is so not handicap friendly at all.

I'm just so tired. Is it only day two of blogging?!

Crap, time to go.

Thursday, November 1, 2012

Because I Need to Add MORE Stuff!

More stuff. Adding on more and more and more. Story of my life. I collect things. Everything. I see how people become hoarders. I do.

This month, besides Thanksgiving, besides being my son's room mom, besides my son's activities, besides midterms and writing - this month I'm doing Photo A Day, NaNoWriMo and NaBloPoMo.

I'm obviously insane and I'm blaming that on all the meds I take everyday to stay functional.

Time to get the kid from school and I'm still writing this post. I've done none of the above - except blog for the day. Where does the time go???

Wish me luck. I'm going to need it.

Wednesday, September 26, 2012

365 days to 40

Happy birthday to me. Happy birthday to me. Haaaaaappy birthday to meeeeeeee! Happy birthday to me!

I made it to 39 - barely. Now if I can just keep going to get myself to 40 without the drama I had this last year, I'm good to go.

My son and I are headed to a new restaurant in town that he calls, "the fancy restaurant" because whenever we're near it there's always dressed up people coming out. So it's our turn to dress up and go to the fun, new restaurant. We're both excited. I'm even considering wearing my 'dressy' outfit to get him from school. Just because I'm a dork that way.

Friday, September 14, 2012

Denied - Thanks SSDI & SSI

I'm in the worst mood ever and I'm venting. I finally got my Social Security Disability determination and it was a denial letter. I know that most claims are denied the first time around, and I probably should've just gotten a lawyer because my case was complicated. They probably got the 1"+ of reports and said, forget this - denied. So I'm filing an appeal and I'm getting a disability lawyer to get things taken care of in a timely manner. I guess even though Polymyositis and lung disease is in their little book of disabilities, I'm not disabled ENOUGH to get an approval. Apparently I should've tried to stay sicker than I am now. Perhaps a relapse is required to get them to approve my claim? Maybe they'd try to deny my son SS benefits if I died during a relapse this time? UGH! I'm so mad I waited all that time for nothing.

I really want to know how people survive without working or income while they wait for their cases to go through this process? If you have income while you wait, you get denied because you have money to live! If you don't work while you wait for months on end, you lose everything because you have no money. The website says it can take up to a year and a half for an appeal process - if you go through every level, not just the first redetermination.

It just really sucks. I'm a single mom trying to keep up with my son's care as well as my own, and now I have to figure out what options I have available to me while I wait for the appeal. So yeah, I'm in a really bad mood today. Tomorrow I'll be over it and be in motivation mode. Dwelling on the negative doesn't get things done!

Monday, August 6, 2012

I Used to be a Writer

Before I got sick (BS I call it), I was just coming into my own as a writer. I mean, I'm going on almost ten years of blogging but I was finally getting things published. Mostly online, but also submitting to magazines once I realized I wasn't such a crap writer after all.

Then I got pneumonia and spent six months in and out of the hospital and sent home with tons of different drugs. Drugs that are affecting my memory and recall. My after sick (ASs) is totally different than the previous life. I don't have the memory for words that I used to. I can still spell, thank god, but the other day I stood in my kitchen mid-sentence, trying to remember the word for pancakes. Instead I found myself asking my 6-year-old son if he wanted the round things in the freezer with syrup for breakfast because I couldn't think of "pancakes."

This happens more than I want to think about. It's always easy words and they fall out of my head as I'm about to say them. Tip of my tongue then lost. Sometimes if I stop and think for a bit, they come back, but sometimes not. It can be embarrassing depending on who I'm talking to. My son's principal, not so fun. My girlfriends, kind of funny - depending on the word. From now on, I think I'll have them interject naughty words when I get stuck, just to break my brain lock and make me laugh.

But as an aspiring writer, this is not a good development. It was bad enough when I couldn't transcribe like in the past because of the pain it causes in my hands and the swelling in my feet/legs from doing it. Now I can't even remember basic words! I know the meds are keeping me going, and I never ever want to be where I was in April ever again. I just want my words back. That and for this moon face to go away!

I'm hoping as I taper on my meds that my brain bounces back as well. The word loss has been really difficult for me, even more than the pain sometimes. Words are everything. If I lose those, I have nothing. Maybe editing others' words is the new direction I need to take. I like fixing grammar/spelling/content when I see errors. I don't know. I'm not okay with this weird memory issue though. I just hope it goes back to how it was in my BS times.

Saturday, July 28, 2012


I'm struggling. Struggling with stress and finances and often pain, more than normal. I'm not sure if it's the stress or the drops in Prednisone that are causing the extra pain. I also did some transcription and holy cow that was painful after sitting and typing. My hands hurt extra bad the next day and my ankles swelled up from keeping them down to press the foot pedal for the audio.

Also, I'm preparing to move soon and I don't know whether I want to move to Milwaukee or stay where I'm at.  I'd be closer to the hospital that was able to find the Polymyositis, and it'd be easier to see family in Chicago from Milwaukee. I like the more urban/suburban atmosphere too. I have to research schools. I may just stay in this town another year to see how it goes with Noah's school.  He has 25 kids in his class and it's too many, in my opinion. I just need to find a new apartment. This one is too expensive and too much to keep up with now that Noah's home for good.

Otherwise, Noah's been in swimming and I'm considering putting him in gymnastics, even though it's all girls from what I saw.  He's been really interested in the Olympic sports and asked about how to do the things the gymnasts do. So, every day is something new and I just keep plugging along. I don't even want to think about the meds and weight gain I talk about at Fit Meets Fat.

Monday, July 9, 2012

Nothing New

A lot has been going on and mostly my Facebook followers get the scoop on what's new. I forget to update here, which is a sad sorry state for my readers...the ones I have left.  I did learn something new about sponsorships for conferences yesterday, thanks to a fellow blogger. Other than that, I'll get around to blogging about my awesome lack of weight loss, my medication side effects - think rashes, and how we'll be moving soon. The latter is the most fun because I waver between Chicago and WI when I look at apartments. I'm seriously considering Milwaukee for various reasons. 

That's all for now.  We have a busy day today filled with doctor visits and then fun later in a pool, I hope.  I'm over extended until Wednesday is all I know for sure. Ugh. 

Monday, May 7, 2012

Procrastination and the Consequences

Here's a primer on how not to manage your health when you have a rare connective tissue autoimmune disease which requires important medications to keep you well....

  1. Don't miss your follow up appointments, and if they're too far to get to... say an hour away and you can't drive and/or find a ride... make an appt with a doctor that's closer, at least until you can get to the doctor you want.
  2. Do not procrastinate making said follow up appts with your doctors. This is important later when you need meds refilled.
  3. Make sure your insurance isn't changing or lapsing, especially if you were in and out of the hospital and may not have gotten all your mail in a timely manner.
  4. If your insurance IS changing or lapsing, CALL YOUR SCRIPTS IN AND GET THEM BEFORE THE DATE OF THE CHANGE OR THE END DATE!!!! Paying out of pocket for prescriptions that cost the same as your rent, reimbursed or not, is scary and stupid.
  5. Call your prescriptions in long before they run out, not a couple days or the day the bottle empties. Rookie mistake here.
  6. Check if the prescriptions require a Dr. approval. This is important if you've done #1 & 2, as it takes time to figure out who is going to refill the script when you haven't seen anyone after being discharged from the hospital. **Ahem**
  7. Feeling better is NOT - I repeat - NOT a good reason to put off your follow up appointments even if your sick of doctors!

I did all these wrong. My insurance was lapsing because I missed the renewal deadline, not even knowing I missed it. I got the paperwork in at the last minute, but it caused a few days lapse and I had to call and beg them to push my paperwork through. Of course I needed my scripts refilled because I was out completely, and of course the most expensive one was it. Why didn't I call in the refill on the last day of my insurance coverage??? Because I'm a rookie and I also didn't realize it needed a doctor's okay. 

I didn't go to my follow-up appointments because they were an hour away and I couldn't get there via a friend. The transport option gave me serious anxiety about going to the hospital alone. I didn't know if I could manage the transport bus stairs, and then with my breathing being labored if I overdo stuff... anxiety overload. Anxiety = pain later. I also was so SICK of doctors and being under a microscope. I just wanted time to enjoy feeling better - finally. I'm finally feeling like myself and I wanted to enjoy it. Womp womp. Paying for this now.

When things finally started looking like they were fixed with the insurance, my primary care physician wouldn't fill my script. He's not familiar with what it does & it's not really his realm. Rheumatology takes care of this one - I found this out after calling doctors all day & all of them saying they wouldn't fill it. So more phone calls and even rheumatology is reluctant to fill it now because I missed my follow ups with this department in said far away location. The fact that I have an appt with a local rheumatologist in a couple weeks is what might save me. If I could drive, I'd be in the far away location because they're on top of the new treatments, but I can't. I find out tomorrow if I get a partial script. *fingers crossed*

So I'll be going a day or two without my Prograf/Tacrolimus. Thankfully, they told me that it's built up in my system and I'll be okay until my script is filled, hopefully tomorrow morning. So between the insurance and the missed doctors' appts, and all kinds of headache and drama, I might get my prescription filled after all. 

Let's hope the Prednisone script, which needs approval, goes easier than this one. Maybe they'll even reduce the dosage! A girl with Polymyositis can hope, right?

Tuesday, May 1, 2012

Six Years Ago - Happy Birthday

Six years ago today, I gave birth to the most wonderful child I could imagine.

I don't get to celebrate with my son because I'm still recovering from the issues caused by Polymyositis. My heart breaks if I think about that too long, so I'm not. Hence this is short and sweet.

Happy Birthday Noah!! I love you so much, and may this be just a blip in our journey.

Thursday, April 12, 2012

So I Almost Died but Didn't

About 2 weeks after my last post in October, just before Halloween, I went into the ER with pneumonia. A few days in the hospital on antibiotics led to respiratory failure, my being intubated on a ventilator, and put into a medically induced coma for about a week. This is the first time I've wanted to write about any of this. Maybe because after almost six months of being in and out of the hospital, I finally have a final diagnosis and I feel almost normal - outside of the physical damage that was done.

I officially have Polymyositis with Interstitial Lung Disease. It's a rare connective tissue (muscle) autoimmune disease with breathing issues. No definitive cause is known, but it means I'm on meds my whole life and I'm officially disabled. I can't lift my arms up over my head, and I can't lift my legs at the hip more than an inch or two right now. I'm in physical and occupational therapy to fix this and I hope to be back to normal in the months to come. I just have to stay on my steroids and anti-transplant rejection drugs forever to keep from a relapse. After experiencing what happens without these drugs, I'll gladly take those two and all the others given to me. I couldn't move without massive pain and my hands wouldn't open or close. Yay drugs, boo side effects.

It started with pneumonia. I couldn't catch my breath so I went to the ER. They admitted me, but I didn't get better so I went to the ICU. Just hours after I got to the ICU, the last thing I remember is saying I couldn't breathe and my chest hurt. Then it goes blank until I woke up a week later. My family says they gave me about a 50% of living while I was out. The hospital basically threw everything they had at me to keep me alive. I had crazy dreams from the drugs, and my son is what I remember most from the dreams. I had a tube down my throat and couldn't talk. I wrote on an eraser board the best I could, and a rolled my eyes a lot when I got annoyed, frustrated or angry. I did that a lot. Not being able to talk sucked. I did make a joke to my stepbro with hand motions (that didn't make sense to anyone but me) when I first came out of the coma. At least I kept my sense of humor, right?

Being in the ICU & having lost the ability to do anything on my own was humbling. Remembering the first time I had to stand up from the bed with a nurse's help is what keeps me going now when I get discouraged. Thank goodness for Xanax because that was the scariest moment of my life, after having been mostly immobile in a bed for weeks. Actually, the bill from that time is pretty scary too. My legs didn't work, my arms only moved at the elbow, and I needed help with everything. I'm trying to forget the tubes being removed and the other help the nurses provided. I could never work in healthcare, ever.

I went to the rehab unit for physical and occupational therapy, but the coughing from the pneumonia made everything so hard. Breathing is usually required when you exercise and I was struggling. I finally was able to walk up stairs and do a lot of my basic care and went home just before Christmas, even though I wasn't 100%. I was supposed to finish my rehab as an outpatient. I felt good and ready to go, but no such luck.

A week after getting home, the first week of January, my mom was here helping me and my right arm swelled up. Back to he ER! I had a blood clot in my right jugular. I was put on blood thinners and had to have my blood tested every week. I also would start to wean off the steriods/prednisone and get sick. I was in the hospital every month, if not every other week almost. I finally had to switch to a larger hospital because they'd had more exposure to my first diagnosis of ARDS - Adult Respiratory Distress Syndrome after pneumonia. I've had so many CT's and Xrays of my chest that I glow in the dark. I have about 8-9 DVDs of images from thouse and the ultrasounds to EKGs that it's just ridiculous.

Once I changed hospitals, I got better diagnosis of what was going on, but everyone kept looking at my lungs as the issue. Finally, this last episode of muscle weakness caused such distress that I couldn't even walk. A muscle biopsy was done along with many other tests, and I joke they went all Dr. House on me, but they found out I have an autoimmune disease. Finally! I was just happy to know what was going wrong with my body and how I can manage it in the future. Once I got into therapy, I rocked it and made super progress. Only two weeks in rehab and going from barely walking to being able to take care of myself at home. The doctors are super impressed and I'm really motivated to get better.

Yeah, it sucks I'm now permanently disabled, but it could be so much worse. My meds will help me get better and therapy too. The worst part of all of this? My son having to go live with my ex-husband until the end of the school year. I miss him more than anything, but I know his being with his dad is the only way for me to get well enough to bring him home. I see him this weekend and I can't wait. There so much more I have to say, but it's time to eat and take more meds. Here's to getting better!

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