What Happens When I Can’t Afford My Meds?

It’s been its usual challenging week at Team Presley Compound, starting with a cryfest on Sunday. Life just isn’t right when you don’t have all your kids around you. It’s just not. Not when you’re a mama, getting older, less mobile. I miss everything about life as we once knew it. Well, I don’t miss being single. Not much. I do love that hubbers.

Then, Monday first thing I get an email that my Pristiq is no longer covered at the usual 80 dollar copay. It will now be in excess of 225 bucks. Okay. Not sure what went awry there. But since I have an aversion to phones (kinda funny since my job is on phones), I shot them a message. Received a reply in the middle of the night, unable to understand it, so I had to call them. Apparently, the generic has been released (I thought that was not supposed to happen until 2020) so if I want to continue to get Pristiq, I will have to pay 225 dollars. I can get the generic for 80-both out of my budget. I was paying FOUR DOLLARS. I had my system down! Why they mess with me like this. So I pulled up my draws, and realized, we are going to have to do some work here. This may work for you too, so I wanted to share it.

First thing I did was go to www.goodrx.com  and look up the generic med in my area. The cheapest thing to pop up for Desvenlafaxine Succinate ER (aka Pristiq!) was Health Warehouse, an online pharmacy service. I could get a month there for $57 WITHOUT insurance. I didn’t even present it- in fact, they don’t even TAKE/PROCESS insurance. So- if you don’t have insurance, you can still use this place. www.healthwarehouse.com. PS- GoodRX operates from an app as well, which I have on my phone. We were without insurance for 2 months, and I had to have certain meds. They helped me find the cheapest in a 30 mile radius – however many miles I was willing to drive. I got my Imitrex prescription for $10 at Kroger in Myrtle Beach, SC – had to drive a few more miles but I was also able to fill up with that CHEAP SC gas! That’s an app you need for sure. I use it a LOT.

Second, I got on my patient portal for my doctor and messaged her and asked her to send my prescription for the generic (Desvenlafaxine Succinate ER) to Health Warehouse. If you are not signed up for your patient portal, trust me, you need to be! I used to not be signed up for any of my docs, but now I get my appointments this way, keep my labs all together, and access lots of info just at the touch of a button. I can message each of my docs and they all message me right back. It is huge. In fact, I would seriously consider changing docs if they didn’t have a portal; it’s so beneficial to me now.  So I got on my portal and messaged my doc and she messaged me back the same day that she sent the prescription.

Third, I had an appointment already scheduled that same day for another doc- my rheumatologist. I printed all the paperwork off for Pfizer’s Patient Assistance Program (I already knew about this because of (a) my job, and (b) I had already attempted to apply 2x in the past- once I was denied due to income when I was working, and once I stopped the process because I was getting my prescription for $4 a month! I was ok with that. But this is an emergency, so I am restarting the process, and just so happens that two of my other higher copay meds are Pfizer meds and I can apply for all of them- just a few to help you out- Lyrica, Caduet, Pristiq, Celebrex, and MANY more- and you can apply for them all in one shot- if you are approved for one you are approved for all. I took all of the paperwork to my Rheumy office, because they prescribed the Celebrex- trying to keep it legit. She just took the whole pack and filled it all out. I didn’t expect that. She was great. I have had another doc do that before also- and also one who didn’t- so it just depends on who you’re dealing with. They even tell you what your income limits have to be- basically for a family of four, you have to have an income under 90,000ish- 400% of FPL (federal poverty level). So I mailed all the paperwork today and should hear back within 2-3 weeks about a decision and then they tell me how to get my meds. Joy! I feel pretty good about it. I sure don’t think God just allowed all that to flow so smoothly just to drop the ball. We will problem solve it all the way through.

So- like I said- it takes some work and some research. Meds don’t fall into your lap- but there are ways to get what you need for you, your kids, family, even your animals I think….but you have to do a little work. I am glad to help with what I know if you message or comment.

Blessings! Alexandra

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Blogging and Botox

Hoping this blog post finds you healthy, wealthy and wise. These are the goings on with me this past week or so… there has been a posting delay (migraine) so the timing may be off…

There has been so much going on over the last several weeks. I can’t believe my mind can be so busy when I live in a bed!

I have been working to build my eBay store. I am in the learning phase, just trying to learn what I can. I really enjoy having the store- the terrible part is shipping. UGH- shipping is a quasi-nightmare! I have added my store (which is not yet a *true* eBay store, but will be working towards that) link into my links page. There is also my Legging Army link, and my Younique makeup link. Feel free to browse if you wish!

In other news, I went to my functional med PA Terri Holler at Victory Health Consultants in Wilmington, and my newest lab work revealed a climb in my liver numbers. Disturbing, since I’ve been on medications long term that have the ability to cause liver issues. AND have been symptomatic- nausea, fatigue, bloating…the labs were not extremely high but enough to get my attention. So I’m researching and trying to detox. I’ve been looking up Dr. Axe. I think you should too. Let me just start by saying, I really don’t want anyone messing with my food. I really don’t. I have precious few enjoyable activities left and food may be #1 on my list. I made the mistake of telling my daughter- little food Nazi that she is- about my lab work and she is determined that my diet will change for the better. Bless her little heart. So she has some good recipes in mind and I will try them because I do want my kids to have their mom. I don’t have mine and no matter how aggravating an older mom or dad can be, trust me, the alternative of knowing they aren’t here and you don’t know how many years may pass before you get to talk to them again is not a pleasant option. So, as far as lies within me- I plan to stay around for my kids. Even though I’m depressed as heck sometimes and want to call in Kevorkian (did he die? I thought he did). I’m increasing the veggies- decreasing the sugars and flours and such. I’m trying really hard. Dr. Axe has a list of healing foods on his blog. A shopping list. We are getting to it and implementing one thing at a time. Hopefully health will follow. Also, I have lost about 5 lbs.! I don’t know how that happened but I am certainly ok with it!

Also, I am supposed to get my Botox injections this upcoming week! I am a little too stoked about getting shots in my head. But my goodness- the migraines- they have been unreal! Just making me so weak and tired- like I have been in match with Rousey- and lost. Of course I would lose a match with Rousey, like there would be any other option. Just the thought that I might be able to, at some point, live a normal life with my love and my sweet babes and the dogs- it just seems too much to ponder. To be able to drive up to Wilmington and go to the Costco, and drop by to see my friend Jana and her hubba hubba, Bob. A real person. I feel like Frosty the Snowman on those old Christmas cartoons. Wasn’t he the one who wanted so desperately to be a real person? REAL?

Live and love,

Andra

Adding links…..

Here are a couple of links for my friends. These are products that I have used and found to be helpful, and if you purchase from me, it benefits me and my family! There will be more links to come and I am setting up a store on ebay as well- eventually it will have only products that I love (I hope)-products that disabled as well as abled peeps can enjoy. Right now, it’s a bit of a mis-mash as I clean out due to minimalism! (See previous post!)

http://www.ebay.com/usr/alexandrn29

 

 

Less is Indeed More

One concept that I have begun to peruse this year is Minimalism. I started to feel that “stuff” was robbing me of time, joy, money- you name it. There is a documentary on Netflix- Minimalism by Joshua Fields Milburn and Ryan Nicodemus – my new BFF’s. So after watching that, I was uber inspired and now have started listening to their podcasts as well. Before I forget to tell you- I highly recommend. Highly. Do yourself a favor and watch, even if you have no real interest in being a minimalist. The documentary is chock full of juicy info that anyone can appreciate.

I’m pretty sure that inwardly my husband has been overtaken with glee- although he has tried not to show it. He has always been a minimalist to some degree, and now that I have begun taking over the family finances, and trying to get back to my old tightwad ways, I’m sure I continually keep his head spinning. I was a free spender when we married. I was always in pain, so convenience reigned over tightwaddery. Also- I was determined that my kids were never going to do without, even if I did. Then…..I decided, I was sick. And had a relatively miserable life. So I wasn’t going to do without either by gollies, when I worked my tail off as a nurse. So I just didn’t think about money. By the time I decided to stop and think about it, which ironically was about the time Darrin and I married, my finances were a mess. All I can say, is that man loves me. I was a physical mess, a financial mess. Every area in my life was truly a mess. Truly. Well, the kids were alive and I had a dog. Darrin likes dogs. I had that going for me.

So – as far as stuff. Things may be inanimate. Stuff is not. Stuff sucks you dry of time, money, energy. It demands attention and other resources. I had to rent storage buildings to contain my stuff. And what I am talking about is not anything that is really worth anything financially. Is it just worth something to me. Drawings my kids made. Doo dads that my parents had, and they are both deceased now (even more reason to keep stuff right? Guilt?). BOOOOOOOOOOKS ….lots and lots of books of all kinds. Homeschool, fiction, non-fiction, marriage (those obviously did not work), cookbooks I mean who uses those anymore!!? And who uses a whole cookbook you could copy the few you do use and keep those out of each book. The money we spent on storage buildings could have paid for our stuff about 20 times. Maybe more.

So what do we do now? Well- I am ebaying everything, slowly but surely. And I’ve made some decent money! I have to go slow, because I’m not doing well; I’m back to daily migraines. But I try to list a few things a day. The postman at the post office always says, “I’ll see you tomorrow!” They are getting used to me now.  I am also enjoying ebaying stuff. It gives me a little something to do to occupy my mind. I was able to take Hubbalicious out for Valentines’ Day- which I was glad to do since hurt his back moving my STUFF!- Yes- really.  My goal is to have everything sold that we want to sell by the end of the year. I also have a debt payoff goal to be accomplished by the end of the year, so these may go hand-in-hand. I have also started taking some “ebay consignment”- in that, if you want to sell some things, I will sell them and you get a percentage and I get a percentage.

Some recommendations: The aforementioned Minimalists documentary with Ryan Nicodemus and Joshua Fields Milburn- they just seem like guys you need to know. Also- check out their website! www.minimalists.com. There are some Facebook groups like The Minimalist Life, and just get on YouTube and look up people like Myka Stauffer and Maggy Day. Keep in mind that Minimalism isn’t organizing your stuff, but realizing that its ok to part with your stuff. That you don’t own your stuff, at some point, your stuff begins to own you.  And sometimes, letting go of that, and the rat race that drives it, equals freedom.

Not yet arrived, but still on the journey,

Alexandra P.

 

 

An Open Letter to the Daughter I Love and Lost

I have too many of these sleepless nights- it has been five years since you left home, equated to when I “lost” you, and I can only imagine that this is similar to what a grieving mother must feel when they no longer have contact with a deceased child. Not to minimize what they go through, because at least you’re still here….somewhere.

You try to say I changed somewhere along the line but the only thing that changed was I just got sicker. Nothing else. Body got sicker, mind got sicker. Psyche and emotions got sicker. But you were never there to see the gradual changes so I’m sure the changes to you were shocking. You expect me to approve of and even applaud changes in you, but you won’t tolerate any changes in me. You won’t stop to consider what can and can’t be helped. There seems to be so much hypocrisy and so many double standards.

Sometimes you fight really hard to try to make things work, and it’s like trying to push a square peg into a round hole. It just doesn’t work. I tried and tried to make things right. I hope you know I did. I hope you understand I just had to let go. Hanging on was killing me. More every day. It was draining every bit of life I had left in me which wasn’t much life at all. I just had to let you go, leaving you in God’s hands, and hope that one day you’ll care about me more than feminism or human rights or any other platform. Or hell, caring even just a little would be okay. Reminder- I’m a human. I truly do realize my mistakes, probably every one, probably even more than you know. Past and present. I can assure you that I have acknowledged them. It’s love, family, and most importantly God that holds family together despite our mistakes.

I would love to have my sweet girl back. I miss her so. I love you to the moon and back, a bushel and a peck, more than life.

Mama

 

 

Misunderstandings

“Man, I hope they find something soon that will help you.”

“I hope you get well soon.”

“I pray for your healing.”

“Are you alright?”

Sweet, huh? Concerned responses by sweet people to my physical “issues” that people, including me, just don’t get. I don’t know that I really see it as an “illness” or a “sickness”. Well, the fibromyalgia part, yes. That is pretty darn miserable, and feels sick. But the Ehlers Danlos- it is a genetic malformation. One could argue (and I kinda have) that I was made this way. I used to do party tricks and I didn’t have pain. Not until I was 10 and had the intermittent knee pain that went away. Then the intermittent migraines. And then the cervical herniations, on and on- other than that- I’ve been good at party tricks and yoga.

Misunderstanding chronic illness is an issue that can be hurtful and bothersome to the patient and/or caregiver. Don’t worry, if you have said any of the above TO ME, I likely don’t remember it for one thing- and secondly I’m just glad you care. I have been in this body a while, doing this a while, and see the heart behind it. I appreciate the well wishes. I am glad when someone isn’t plagued with illness and doesn’t have to know it intimately. I’m glad for the awkward-ness dealing with it, because that is a sign of a foreigner to this territory. I’m glad they don’t know what it’s like to be not alright, not getting better, not getting well, not healing, lying in wait for the next flare of symptoms. I’m so glad they don’t experience pain all day and night like I do, waking in the middle of the night. Lord knows, I hope they never ever have to.

I’m also glad that I DO get it. I’m glad that I know what it feels like if you hurt all night. I’m glad I understand when your family doesn’t. I might be awake at night when you are! If you wake in the middle of the night and see me on Facebook, you could message me and I might answer back. If I don’t, don’t take it personally though. I might be sleeping, and we chronic pain warriors need our sleep right? We need 10-12 hours of sleep a night; don’t let anyone tell you otherwise! God doesn’t waste a pain and if I have to hurt, I feel much better knowing that I’m hurting to benefit someone.

So- what can we say to the chronic illness sufferer? Is she really such a fragile beast? You can say any of the comments above. I think they will appreciate them still. Or how about-

“I’d be glad to go to the doc with you sometime if you need that”.

“Why don’t you let me bring you lunch?”

“I was thinking- maybe you have some laundry I could fold and I could hang out with you, too.”

“What if I pick you up for church?”

“How have you been feeling (really)?”

“You are very important to me/us. We love you.”

“How can I pray for you?”

One last word-

Please don’t assume a lack of faith on behalf of the chronic illness warrior. Please don’t assume a lack of prayer, some unpardonable sin, or some brokenness that has stood in the way of their healing. In these people you may find some of the rarest treasure, deepest faith, most dedicated prayer lives. Get to know them. Yes, they may have some huge, glaring sin. But it has been in my physical brokenness that I have come to know the Lord at a level that I don’t know that I ever would have if I were well. And I don’t know that would change a thing. I think I have been hurt more at times by people assuming these things than the fact that I was sick and in pain. Let us be careful that we don’t devour one another- especially the weak.

No, I wouldn’t change a thing.

 

A Lengthy Summary In Attempt To Introduce Myself and My Illness- Part 1 A Lengthy Summary In Attempt To Introduce Myself and My Illness- Part 2

This constant pain and fatigue made me question a lot of things. I had left a life of abuse a couple of years earlier and now had a successful career and family life since- or so I thought. Now I can barely work- heck, I can barely walk sometimes. I cried at the drop of a hat, for any or no reason. Physically I got worse and worse, and in the process I met my husband, who didn’t care that I was so broken. He was content to sit beside me in bed and watch every lame TV show I had become addicted to. He was a true friend. We married about 6 months after we started dating. He made sure I got out, helped me assess my finances, which were a true mess, and helped me assess my life in general. He took me to the hospital when I needed to go and wasn’t scared of my disease.

We moved to a small beach town, I eventually stopped working full time and some days I spend the whole day in bed. Today was one of those days. I woke up with a migraine and could not seem to get it under control. The house is a wreck. My husband has worked all weekend. There’s nothing for dinner unless the kids figure it out, which they’ve gotten really good at doing. Makes me feel like mother of the year. I’ve found that I have to sleep till 10, even noon to get enough sleep for this disorder. From what I’m hearing, that’s the norm. And I still wake up so exhausted. I watch some of the weirdest tv shows ever, as my husband will attest to and I do this a good bit of the day. I try to take a bit of the day to pray in between Real Housewives of Atlanta and Real Housewives of Beverly Hills. And , let’s don’t even discuss Netflix. I sell Younique makeup, so sometimes I makeup my face even if I’m not going anywhere. I color. I read. I Pinterest like crazy. I cook on stools if I can stay upright.

I have a grown and almost married daughter, 23, a son, 18, and another daughter, 15. They have been the center of my life. I have two dogs, 10ish and 5ish, that keep me company during the day. And Mr. Wonderful, who helps me cope with life and put a ring on it almost 3 years ago. I work from home a little bit each week and have a wonderful church family. My mom and dad passed away prior to my illness, so it’s just the five of us in my family. Jesus, Fibromyalgia, and Ehlers Danlos Syndrome, along with their cohorts, have been my constant companions. And that’s my life.