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?

Honesty intimacy

 

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.

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.

tag

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

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

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.