Just a minor life change, NBD

Well, this is not a post that I ever expected to be writing.

 

There’s a lot of fears that present themselves in the lives of people who are chronically ill. Illness forces you to think in ways you never have or would have. Fear of abandonment by family members, friends, SOCIETY in general is one of the more overwhelming fears. And just as you try to tell yourself these fears are unfounded, the unexpected happened.

I haven’t really talked much about this to anyone other than those closest to me or who I knew would pray, but my husband and I have separated. I don’t want to turn this into a bloodbath of any sort, so let’s just say we didn’t see eye to eye on some things. I don’t want to speak for him. I know he had his reasons, and I’ll leave it at that.

Still however it leaves me in quite a predicament- rebuilding a life that was already on shaky footing, already broken. And NEVER ever thinking that as close as it felt we were, that this would be the outcome.

God doesn’t require you to have a neat and tidy situation to help you rebuild. He is all about rolling up the sleeves on his white robe (thinking back to all the Jesus pics with him and a lamb from my childhood). He gets into the mud with you. He ain’t scared of your broken, your ugly. Not one bit.

So….here we are, rebuilding and taking each day as it comes, cause reallly- what else can we do??

I’ve had to let go of a lot of people I cared very deeply for, because I need time to heal. And I am very serious about that. I don’t have any energy to spare, and the most of it is going to be wasted on the people who most obviously have been placed in my life by God – my kids, my family, my church family. Anyone else, I might not have the time or energy for.

I see life very differently since I have been “sick”. That’s really a whole different blog post, but I have stopped praying some things. I have stopped praying (for the most part) for my healing. I have stopped praying for the removal of “bad” things in my life. I stopped praying to received only good things. I really feel like across the Christendom we have it so messed up and so backward. Instead, I want to pray for God’s idea of what I need and don’t need. And He really delivers. But we have got to get out of that first world mentality, that everything has to be my way, right away. What happened to the honor of suffering? Rejoicing in trials? Did we forget that we are in the upside-down Kingdom, the one in which everything is backwards? Blessed are those who mourn. Count it all joy. We so quickly forget all that when hard things hit.

I am being stretched, my faith is being stretched, my love is being stretched. I thought I would hate every minute of it. But you know what? I don’t.

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Honesty – Is it Really the Best Policy?

 

A friend and I recently had a “discussion” over social media about the elderly and how they (some of them anyway- maybe most?) lose their filter and really don’t care what they say- whether it’s offensive or not. My mother and grandmother had a really bad case of this- my grandmother would say whatever seemed to enter her mind, completely filter-free for as long as I knew her. Or, well let’s just say if she had a filter, wow- I can’t imagine what her unfiltered thoughts were. My mother grew more verbally open the older she got, and the sicker she got. I guess when you know you’re about to meet your maker, you gotta say what comes to mind. I’m kinda okay with that. It really was pretty embarrassing at times though. Especially the time she gave the pastor the finger. And could be hurtful. But I don’t hold it against her- she is forgiven.

 

I was an only child and I will totally admit- I’ve never really been an adequate communicator. When things go south with anyone, I typically will keep it in and rot inside- which is probably why I have to drink Mylanta. I have often felt that I didn’t have a voice. I didn’t want to rock the boat. I don’t deserve to have an opinion. I’m not anyone special- so I don’t deserve to speak my truth. I feel this line of thinking has been a breach in my integrity. In finding myself again, I am going to have to verbalize who I am and what I want, and maybe even why. Clearly and concisely. In good times and bad. I got stuff to say.

 

So- I’m gonna start communicating- and letting the chips fall where they may. I’m gonna do It until I get it right. I’m sure I’ll mess up a lot as I try. It will be like a baby learning to walk. I’ll fall down and pick myself back up. I’m gonna say what’s on my mind (and not just via text or social media). I’m sure I’ll say things I wish I hadn’t said. People will receive what I say wrongly. But that’s just the way it is. I am going to start being true to who I am, developing me, trying to learn what makes me tick- again. The Word says I’m fearfully and wonderfully made, and I’m excited to speak my truth. I’m kinda looking forward to it.

 

The rest of the world, however- the rest of the world may need to duck.

Who is Me?

 

As I have been typing out my prayer tonight- which I haven’t done in a while- I realize that most of what made me who I am has been stripped away.

I live in a bed, basically. I’m not really able to go and do with my kids like I used to, which I loved. I’m not much able to get out and lunch with friends, which I used to enjoy. I don’t wake up at 4am and have my quiet time with the Lord anymore. I’m lucky if I even have it at all, because most of the time I don’t, it seems. I certainly have the time on my hands! I am just not plugged into the power source, as my pastor put it during one of his messages. I have tried to get back into good habits and for whatever reason, it ain’t happening for me. Maybe it’s my fault, I really don’t know.

Furthermore, no one wants to hear my whining and complaining. So while I’d like to complain 24/7, I try to stuff as much as possible.  Sometimes, much to my dismay, it comes out.

I don’t want to be ungrateful. I mean, I’m still alive, still breathing. My kids are healthy. I do have a husband willing to work while I can’t. We have food on the table and the bills get paid, although discretionary (fun) money is scarce. We are certainly getting by, which is more than I can say for a lot of people I know. Furthermore, I have friends in way worse shape. I just hate to see anyone going through this stuff, even though the Bible says to rejoice in trials. I know this trial is making me- making me a new person. But man, is it ever painful, in every way. It is exhausting.

I used to be a nurse. While I wasn’t the best nurse in the land, I loved serving people and helping make their lives a little better in some way. That part of my identity has left the building, also. Heck, I need a nurse myself probably.  Now my nursing is done behind a computer screen and on a phone. I find this ironic and comical, as much as the Lord knows I hate talking on the phone. But, the ability to work the way I do is a huge blessing.

I can’t clean my house. I can barely get dinner made. I live vicariously through people on TV.

I can’t always make it to church. If I do get there, I can’t wait to leave- simply because I’m in pain and I want to be home.

I can’t drive or sometimes even ride long distances anymore. Something about being in motion in the car makes me miserable. So that greatly limits my visiting the area I was from. I have to keep in touch with everyone via social media.

There’s a whole lotta can’ts in my life right now.

What CAN I do?

I can blurt out little prayers to the Lord on behalf of my family and friends. I can usually make dinner- maybe 4 nights out of 7. I can mail doo dads to one of my special friends (well, I can put the stuff in an envelope and my son will usually mail things for me). I can encourage my kids to lay with me and I can rub their backs and play with their hair. I can joke and enjoy their company and laugh. I can work my telephone triage job for brief intervals and for the most part enjoy it and feel useful. I can read encouraging Christian blog posts. I can comment on my friends’ posts and let them know how I feel about them. I can text people and do the same. I can manage our finances and make meal plans for a few days at a time. I can fold a load of laundry and put it away. I can’t do all these things every day, but I can do them sometimes. And I’m gonna try to figure out what else I can do.

 

So, Lord, in obedience I come to you, and I thank you for what I CAN do. I also thank you for this trial, in obedience to your Word. Although it is a literal pain, I thank you for the good things that have come from it and I do know that you work things out for my good and your glory. I thank you for your patience with me as I navigate these unchartered waters. I thank you that as I sink, you are there to pull me up. Thank you that I have friends who care about me and check in on me.

 

Why did I type this out? To get it out of my system, so I can start tomorrow fresh and new hopefully. Why did I post it, you may ask. Because I know someone somewhere out there feels the way I do. They have lost their “me”. And I want them to know they aren’t alone. This is my only floor, my only podium, my only voice. I’m not interested in pity, I loathe pity! I am just trying to figure me out. Trying to make sense of what’s going on. Something we all need to do for ourselves.

 

Thanks for hearing me as I journey.

Andra

What If….. A Dissertation on Illness, Need, Death, and All the Other Things We Dislike About Life

 

 

Last night, I was watching (for the second time) a documentary regarding the life and death of Joey Martin Feek (To Joey, With Love– you may be able to watch this on Netflix or Pureflix). I didn’t follow Joey’s story until she became terminally ill. She seemed to be an amazing person, who lived an amazing life and died an amazing death. Many have been so heavily impacted by her life (and death). It’s such an inspiring, yet sad, yet SO INSPIRING story- of a beautiful person with courage and faith. And she left behind a beautiful family whom she loved with every moment.

Since I have been sick (constant chronic pain since 2009, in 2016 diagnosed with a condition called Ehlers Danlos Syndrome- a genetic disorder that I have had since birth but only have recently received the diagnosis. EDS causes pain, migraines, anxiety, depression, gastrointestinal problems, genitourinary problems, extreme fatigue, PAIN (did I mention pain?) – and the list goes on and on), I have had multiple people, including myself until the last year or so, pray for my healing. I have had people blame my lack of healing on some sin of mine- there’s plenty of those it could be pinned on! I have walked through a miry swamp- wrestling God, wrestling disease, being worn completely out by my disorder, by irritation with people, with God, and with myself. I’m sure you can relate, because even if you are not sick, you have some sort of problem. In this sin-sick world, there are financial woes, physical woes, family woes. You may have a wayward child or not enough money to pay the rent. You may have people you don’t get along with, maybe even in your own home. You may have a marriage that is teetering on the rocks. I hope none of these are true. But you probably have at least one thing in your life that really gets your goat, and you can’t figure out why God isn’t fixing that thing. I mean, he supposedly loves us, right? And I love my kids, and the one thing I’d love to do is fix every single one of their problems.

But….WHAT IF. What if we threw our arms open in reckless abandon of our circumstances, instead of trying to change them? Hear me out before you assume I’ve lost it. I mean, if your kid is sick, or in rebellion, or your body is shriveling away, the right thing is for it to be- well, righted? Right? Made right? But if it isn’t happening, then, it isn’t happening. And why continue to beat our heads against a wall that isn’t budging?

I am wondering if the answer might be to just embrace the circumstances. Embrace the pain. Embrace the discord, or the person wronging you, even as they are wronging you. And even in their dirty muck. I long ago quit asking for healing. My logic was- I was made this way. It’s not like I caught some disease. I was put together chromosomally like this. Kind of the same way someone with Down’s Syndrome is put together. Do we pray that they won’t have Down’s? I mean, usually we just accept that they do and enjoy their beauty and loving personality. At least I do. I am wondering if we maybe should look at our own issues this way, embracing them, ACCEPTING them.

I despise the mere thought of ACCEPTANCE in my own life. I am a fighter. I historically have fought problems, and have warred in prayer. I am goal oriented. I am always thinking forward to the next big thing. I always have a goal in mind- finish a degree, buy a different house, accomplishing something/anything. But maybe that’s not always the answer.

While watching Joey Feek, I saw her cry. I saw her and her husband and family pray for good. But the greatest thing I took away from this wonderful documentary, is watching her live, despite the dying; watching her embrace her circumstances. Sometimes living meant having a surgery, or just ironing a shirt. She didn’t fight against the cancer all day, every day in prayer for healing. They seemed to pray as they normally would, asked for healing, and then embraced in faith the circumstances that did not change, only worsened. Then she died. She received the ultimate healing, the ultimate victory, from a good God that she had entrusted her life with. She had a baby, a husband, and every reason to pitch a hissy fit because of her circumstances. I’m sure she had her moments. But I didn’t see any hissy fits.

Circumstances are what God uses to mold you into the person you were created to be. The clay doesn’t fight the Potter’s hand while it’s on the wheel. It curves and bends to mold to the hand. It doesn’t yell back demanding prayers either. It doesn’t stand there scratching its head, or get bitter and dry up. It just turns into a beautiful piece of pottery. And that is what our lives are likened to in the Book of Isaiah- we are clay on the Potter’s wheel.

I was inspired by Joey’s life. I want to be like her, as she followed Christ. Her life is a beautiful testimony of a life well lived and a woman who loved well. Even though she is no longer with us, she still lives on in the hearts of those who loved her. Isn’t that what we all want in life? Well, I do.

I want to be a Joey.

Blessings,

Andra

Ode To My Prius, May She R.I.P plus a little Meal Planning Magic

This week I had a quasi-near-death experience as an SUV pulled out in front of me, leaving me in a heck of a predicament as I sideswiped it. Thankfully, the only injuries were our our hurt feelings and our vehicles. I received a call today that my car- a Toyota Prius-is a total loss. We expected this as the right wheel appeared to be bent, the car is 11 years old, and has 160,000 miles.

The whole predicament is kind of inconvenient, but I have been praying for us to get out of debt. I saw no feasible means of pushing this process along due to Ehlers Danlos Syndrome. So I have also taken an ax to the finances, whacking off everything that isn’t essential. Except cable. I haven’t gotten there yet. Since I spend a great portion of my time in bed, I want my cable. At least until we have some other feasible alternative.

My husband and I married July 31, 2014- we’re coming up on our 3 year anniversary. I brought a large amount of debt to the table. I was basically disabled, was the single parent of 3 kids, and did not have time for all that budgeting stuff as my energy level was sucked dry from working. When you are sick and you work full time, that is all you can do. That’s it. I had no energy left to worry about money. I was just surviving.

So I spent what I felt I needed to and if it didn’t fit into my budget, I figured out how I could get it. I knew what the Bible said about debt (the borrower is slave to the lender) but I didn’t have time to really care about that either.

My husband and I now are reaping the consequences of my lack of diligence in regard to money. This year I took over management of the finances. It has helped me so much to see where our money is going and to have to make decisions for the family. I sometimes can’t believe my husband entrusted this to me; but he did, and I do try to do the best I possibly can because a lot is riding on it. Our family’s future is dependent on me making good decisions and I now take that very seriously.

So, when I wrecked the car, I thought about things a bit. We have an old camper sitting in the yard. It has only a little over 50,000 miles on it. There are a couple of things that need to be repaired- for one, the air conditioner! But the more I thought about it, the more I thought I’d like to apply the amount of the car to our debt rather than rush out and get a new car. I don’t drive much- I just take my daughter back and forth to work and don’t even do that every day. Between the amount for the car and our tax return, we should be pretty close to being out of credit card debt. And, my friend, that is huge. Because the amount of debt I arrived with was HUGE.

The other thing I’m doing, rather than having big shopping trips, is going through daily what we have, and making a meal plan based on that. For instance, yesterday I knew we had bacon. We had eggs. I had pancake mix and potatoes. BREAKFAST for dinner! And today, I have lots of leftover pancake batter, some leftover taters, I still have some eggs – so I knew I could do it again! I just wanted a breakfast meat to go with it. I went in my daughter’s store when I went to pick her up and they have bacon on sale again. I really wanted ham, but I can deal with bacon, and the rest of the family likes it. It was 2.99 for a pound, so bacon it is. Tomorrow, I have some beans, cornmeal, cabbage that needs to be cooked, so we’ll be having a country dinner tomorrow night- with no meat. Just beans for protein! And I won’t have to buy anything for that. I have stuff to make spaghetti, minus the noodles, so for a pack of noodles (around a dollar) I have a third meal. And on and on we’ll go, until we have nothing to transform into a dinner. And we’ll be saving money that we can put toward bills and debt.

I encourage you to google “$25 meal plan for a week” and you will see several good meal plans- surely one will fit your fancy! My favorite teaching on this so far is:

http://www.houseofhermens.com/how-to-cut-your-grocery-budget-to-25-a-week/

She has many great ideas, and a list so you can list out what you do have, so that you can make a plan based on that. We rarely, and I mean rarely, have to ever throw anything out because we transform leftovers into good meals!

I do miss my Prius, and I do plan to get another car. But I won’t be rushing to do so. For now, you’ll see me swinging around town in an 86 Toyota Dolphin, living it up. I’m just praying it will continue to serve us well!

 

Blessings to you and yours.

Differently-abled? or Handi-capable?

Last week, I received my handicapped tag in the mail. Very bittersweet- on one hand, I can now go shopping (MAYBE?). On the other, I had to look at my condition as it lay right in my hand. My doctor had approved me for a handicapped tag. At 43 years old. My heart broke. How did this happen? I mean, I asked for it- I wanted it, I want to be able to go to the store and other places with my kids and actually make it in the door and through the store. So we eliminated the problem of getting into the store, now I just have to get through it. But to actually hold my status in my hand- it was more than I could bear. However- I used it for church this morning and could see the benefit! After cleaning out one of my small raised garden beds yesterday (and afterward coming inside and sleeping for two hours!), I was extremely sore. Heck, I’m still sore, probably getting sorer. If that’s a word. But since I was able to park in the handicapped spot at church, I had no problem getting in and sitting down, and usually I’m in massive pain just walking through church. I may get over the heartbreak of handicapped tag, just saying.

The other thing I’m dealing with -primary on my mind- is filing for disability. I am going through the process as we speak, and I should have an answer in a month or two. I had my medical evaluation over a week ago, and I have my mental evaluation this week. I would be so happy to have disability awarded. It would probably be another kick in the teeth initially, but it is sure needed. I have trouble even getting through an hour of work. The exhaustion is more than I can take sometimes. I’m also tired of trying to come up with ways to make money- things to sell, etc. People who are sick should not have to deal with things such as this. But I cannot sit by and let my husband shoulder it all. If it’s saving money somehow or making money somehow, my brain is all about it. I don’t want him to worry. And my medical status brings quite a few bills our way- it’s just the nature of chronic illness.

Couple of good websites I found:

http://www.ratracerebellion.com- if you want to find something from home full time or even just part time to add to your income.

http://www.laurengreutman.com – Kinda Dave Ramsey-ish, budgeting and financial help, menu ideas, freezer meal planning

The Abundantly Pregnant (but not) Belly

So, since I have had Fibromyalgia and EDS, progressively the old tummers has had its share of issues. The most frustrating one is – I blow up and look >9 months pregnant- more pregnant than I ever even looked pregnant I think. I just wanted to take a minute and post a little salad/salsa that I love when I am in this condition!

http://www.centercutcook.com/corn-black-bean-avocado-and-tomato-salad/

This is so yummy, I could eat it all day. I eat it with a few blue corn chips from Aldi. Pretty cheap! I also drizzled it with apple cider vinegar for additional detoxifying benefits.

 

 

Just wanted to add this as a quickie post, in case it helps anyone else 🙂

 

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

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