Whether we participate in the idea or not, money makes the world go 'round, plus the updates I've been putting off.

Ok, this post title may not seem connected to my blog, but it really is.  I'm going through one of those phases again where I'm feeling guilty for not bringing home the bacon.  In reality, I know that there's not much that I can do about it right now, but my brain keeps telling me that I should just force myself to find a job and try to suffer through it...even if I get fired in the first 2 weeks for missing 5 days of work because my chronic pain took over and I had to go home, or worse, stay in bed all day from the pain...at least they'd have to pay me for the time I did work, right?

Anyway, what brought this on was the fact that we've had a super expensive month, including a hail-damaged roof. So, it's been an expensive month, mostly because all of these unforseen things keep happening along with the forseen (is that a word without the "un"?). Aside from that, as  I've blogged before, my hubby drives 120 miles/day to work and we haven't been able to sell our house to move closer and save on gas funds because of this crazy economy where many are losing jobs and even their homes because they are in worse situations than we are. I know that our tight budget is the story of most people, so I'm preaching to the choir, but when it is paired up with health problems, and even worse, one half of a couple that is almost constantly in unrelenting pain, the stress and worry goes through the hail-damaged roof. (couldn't resist that one).

OK, now for a quick update/example of a poorly-run healthcare office.  My pain level spiked, I called my pain clinic, also mentioning that my last nerve block was no help, and aside from that left me with a numb upper-leg. They took 2 days to call me back, even though they have that crappy 24 hours for a call back policy.  I missed the callback as usual, took another day to get them back on the phone. Was told to make an appointment to see my Dr.  Called to make an appointment, they said it would be 2 weeks to get in.  I was angry.  By chance, an appointment opened up for the next morning (last Friday) with a Physician's Assistant, so I took it.  She focused only on the numb leg, drug-tested me, scolded me for taking more pain killers than prescribed (which I didn't, she was actually mis-informed), upped my number of percosets to 120 for the next month, told me that insurance probably won't approve  nerve blocks any longer because the last 2 didn't work (even though I maintain that the Dr. missed the last 2 times), had no other suggestions for me, and then ordered an MRI for my numb leg, telling me it would probably take 2 weeks to even get a call to SCHEDULE the MRI. I know, that was a run-on sentance, but I'm OK with that. She then told me to schedule a follow up after the MRI was done.  Here's where I admit that I cried through the second half of the appointment and my entire 35 minute drive home because a) I'm in pain and b) because I was casted aside with no plan. Note again that the leg numbness is not my complaint, just a symptom that I reported after my last nerve block.  I can't remember if I mentioned that I clearly remember a giant pain running down that part of my leg during my last nerve block, but that's exactly what happened.

My next steps were as follows: 

• I had my husband call the Dr's nurse to ask what the clinic's next steps are to deal with the pain...I signed a release for the clinic to talk to them anytime I want because frankly, I take it very personally when I'm not treated well by a healthcare professional and I tend to yell, whereas my husband's charming personality gets results.
• I obtained a referral for Physical Therapy with a highly-recommended PT from my new OB/GYN so that I can try again to improve my pain through non-surgical methods
• I also obtained a referral for a second opinion at the pain clinic in the same health system as the new OB/GYN
• My husband received a call from the clinic administrator instead of the nurse, and he made sure that they included my request to try cheaper alternatives, like a TENS unit, along with his request for a very specific short-term and long term plan for my care.

So, with all of that taking place, I did receive a call from the place I was referred for an MRI in only (insert sarcasm) a week's time, and guess what happened?  The place they wanted to send me, which from the business degree's that my hubby and I have, we figured out that they have a kickback deal for referrals, tells me that they are out-of-network from my insurance.  I promptly told the lady that I will not be setting foot (or lumbar) in her office, and she tried to tell me that I had to schedule with her.  Yeah, right. So, I called the pain clinic back to explain, and gave them the name of the hospital where all of my new doctors are, and asked for the order to be sent there.  Then, I received a call later that day from the pain clinic (which nearly gave me a heart attack, since I never receive same-day service from them), saying that I can call the hospital I provided to them to schedule the MRI, and she gave me that hospital's scheduling number.  Guess what happened when I called...seriously, guess....They had no record of the order being received!!!!!  So...as I'm standing in the grocery store on that Friday, on my way to my weekend vacation, I left a message for the general voicemail of the pain clinic, which promises to return my call on the next business day explaining that the order was not received, and provided the fax number where they can resend the order.  It is now Monday, and guess what...yes, you guessed it, the pain clinic never called me back, and I didn't not hear from the hospital, which is fabulous at handling business, to schedule the MRI.

So to summarize, as I did on my Facebook account the other day.  Can we puh-leeze fix the healthcare system?  Pretty please? 

Anyway, all that said, I've done no proofreading, so if anything is unclear...I'll probably fix it another day. Probably.
-S

A tribute to my husband

Hi,

I'm here.  People that are close to me in my life know that when they don't hear from me in awhile, it means that I'm not feeling well.  That's exactly why I haven't blogged in a bit.  Anyway, I don't have the time to do a full update right now, but I want to take a minute to share something that's been rolling around in my head for awhile now...

Not long ago, my Mother-in-law (Hi, Pat!), forwarded an email in which the moral of the story was, "God answers our prayers in his time, not ours".  I sat and pondered what that meant in my life for a bit and then something hit me like a lightning bolt...One of my prayers was answered before I even knew that I needed to pray for it.  Specifically, God brought my husband into my life when I was just 18 years old and on my own for the first time.   We started dating when I was 19 and was truly on my own, with no place to live, no job, and very little money in savings--I seriously wasn't much of a catch at this point. Yet, we fell in love and married 5 years later when I was 24.  My first sign of serious trouble with my health came less than a year later when I was 25.  If I had not had my husband in my life (along with his family) to support, comfort and help me navigate through this mess, who knows what would have happened to me?

Just something to think about.
Love ya, babe!
-S

From somewhere in Iowa

Happy Mother's Day to all the Mothers out there! In a surprising turn of events, my hubby and I are on the road on the way to Manila, IA where my Stepdad, who many of you simply know as "my Dad" since he raised me from the age of about 13, grew up.  We are going to make it to my Grandmother's funeral after all. I also get to see my Mom on Mother's day, which was not expected since she lives in AZ during the colder months.

Yesterday started badly with my pain. I was desperate to feel better so I took a pain med that I hadn't taken in awhile and it absolutely floored me-so much that I actually slept in a chair for a couple hours while 4 of my in-laws were dancing away to the game "Just Dance 2" luckily, I woke up feeling pretty good and was able to show off some of my sweet dance moves...and also the not-so-sweet ones. :)  the exercise must have been just what I needed because here we are, on the road just over 1/2 way to our destination.

Another note-preparations for me to be in the car for a long time are rediculous.  Pillows, blankets, snacks for the meds, ginger ale, comfy clothes in layers, a train case full of meds, my medical id bracelet, my med id card for my bleeding disorder, and the garmin in case we need to find an emergency room. Fortunately, warm weather does me good and it will be 85 degrees tomorrow.

Ok, back to the road trip now. I'm sure the hubby would like some attention on this 7 hour drive.

-S

Not good

Well, I'm not too surprised that things went downhill again.  Being sick along with stress and my Fibro flare caused me to miss my normal strecthing and light exercise routine for too many days. Now I'm dealing with a new round of pelvic floor muscle spasms, which is the worst of the worst of the pain that I suffer from (info is in a previous post somewhere). This one hits a 9 on the pain scale and takes a few days to calm down through specific exercises.

Aside from this is the fact that my Step-Grandmother passed away this week and I won't be able to travel the 8 hours to make the funeral.  She was a fantastic woman who instantly accepted me and my sisters into her family as one of her own when I was about 14.  I love you, Grandma Reding and I hope that you are smiling down on us with Grandpa.

-S

The nightstand of a sick woman

I'm always trying to find ways to illustrate my life, without feeling like I'm sharing too much of myself,  to help others understand what life with chronic pain is like.  I woke up this morning feeling very tired, yet better than yesterday.  I took one look at my nightstand and realized that the picture shares 1,000 words. Here's a rundown...

• Ginger Ale-helps with the nausea I constantly fight (3 cans from the last 24 hours). The wrappers are from the bars that I eat at night or in the early morning to keep pain meds from hurting my stomach.
• Prescription bottles-percoset for pain, gabapentin for nerve pain. Tizanadine to help me sleep. Wrapper from an Imitrex that I had to take in the middle of the night when a migraine set in and I had to fumble around to find it.
• Other medications-Mederma to help reduce painful surgical scars, ibuprofen (that I'm not really supposed to be taking) for sinus pain from my cold, Aspercreme to help with some of the muscle pain.
• Books-I've been reading into the late hours of the night.
• The box in the background-this is where I keep all of my meds that I'm not constantly using.
• The bowl with the scarf in it- I wore the scarf when I was out shopping last week. When I got home, I felt awful and ripped it off while I laid down to rest.
• "The normal stuff"-eye makeup remover, eye cream, moisturizer, water. Notice that this stuff takes up little space comparatively.

Otherwise, my plan is to take it easy today.

-S

 

This is my "Life isn't fair" post

Hello,

I truly have come to believe that keeping a positive attitude is the only way to get through the type of health issues that I'm dealing with, but that does not mean that the "life isn't fair" moments don't happen.  Here's my kick-in-the-pants for the day.

As mentioned, today is the bachelorette party that I was really looking forward to attending.  The bachelorette is a girl that I played soccer with from elementary school until I moved in high school.  If you read my previous post on soccer, you'll know that this means that all of my soccer friends from back then will also be there.  I had already decided in my initial RSVP that I should skip the pre-dinner activity and the late-night barhopping so that I don't destroy myself for a week because I overdid it yet again.  My plan was to attend dinner and then the comedy show before heading home. A couple of hours ago, I realized that there was no way that I could make the two parts of the night that I planned to attend. I debated attending dinner only, then the comedy show only, and then I finally decided I just couldn't make it.  So, I sent a text message to the party organizer explaining the situation.  As the message was going through, I missed an incoming call from my sister.  I ignored it for the moment because I was really upset about missing yet another thing in my life because of Fibromyalgia/Endometriosis/Chronic Pain, etc. etc.

After my hubby helped me pull myself together, I was ready to face the world again and listened to my voicemail.  My sister told me that she was coming into Wisconsin  from Minneapolis for the evening, (coincidentally for another bachelorette party) but that she wouldn't have time to meet up with me, and that she didn't want me to feel like I had to head into town anway, since I live about 35 minutes away from where she will be.  Little did she know...I was going to be inches from her!!! It would have been nice to see her for a couple minutes. After becoming upset and pulling myself back together and calling her back, she told me that her husband (a comedian) came with her and would potentially be doing a very short guest spot at the comedy club tonight...yup...the same one I was planning to attend. Seriously?????  Ugh!!!!!  She did text me a few minutes after we spoke to let me know that he wouldn't be doing the spot, but wow...the universe kicked me while I was down!

So, in the end, I'm sitting on the couch, watching TV and trying to figure out what the hubby and I can do tonight to make my day not totally suck.  My options are of course, pretty limited since I don't feel well, but my husband is a fantastic cook and we like watching movies, so my guess is that this will be our night. And you know what?  Now that I've worked through the emotions, I'm ok with it.  Here's hoping I can make the actual wedding.

Party on!
-S 

When will I learn?

Good morning,

By chance, I came across this article on Savella, the drug I recently had to stop taking because of extreme dizziness.  To my horror, there are serious concerns about this drug that the FDA approved to treat Fibromyalgia.  Even though the prescribing doctor gave me a prescription to continue taking a low dose, I opted not to start taking it because my new Ob/gyn provided a list of other doctors for me to see that would re-evaluate my entire treatment plan. Maybe this event will finally encourage me to conduct thorough research before popping another new pill.

http://www.bloomberg.com/apps/news?pid=newsarchive&sid=a0lZW4ldgHns#share

-S