Tag Archives: anxiety

What it is like

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Social media can truly be a miracle sometimes. When asked a question you have time to think without your facial expression giving it away or making it awkward. It is a small thing but one I find very helpful. Recently I was talking with someone who had just gotten diagnosed with a chronic pain illness. It would be a matter of constantly managing it. She asked me, “What is it like? How do you do it? I just can’t imagine ever being okay with this. It is so distracting and I absolutely hate it.”  I agreed. I still feel all of that. It hasn’t gone away, more like it is just simmering.
Simmering, yeah that is a good description. Let’s go with that. It is a lot like cooking a meal that will never ever be done but you know it will be worth it.  It is a labor intensive meal like Thanksgiving or Christmas dinner. It is like you have four pots on the stove and something in the oven.
One pot is emotional/mental health. One pot is physical health. One pot is spiritual. One pot is work and in the oven is the family. Just like in cooking you have to keep adding ingredients and it can simmer on its own for a bit but it needs a stir now and then. Every so often, and often when you feel you have it the most under control, all the pots start boiling over. Sometimes some smoke even starts coming from the oven.  Normally though the boiling over happens one at a time and you can handle it and move on. You take a taste every once in a while to check on it as a means to see how it is coming along. Sometimes tasting can tell you if there is a problem. Sometimes it tastes good but really something has started to go bad you just can’t taste it yet.
Then there is the other problem. Suddenly an ingredient is no longer working. It is no longer bonding with everything in the pot to make it one solid thing. It could be that self-care has fallen off your radar. It could be that you cut back on exercise. It could be that you thought it was self-care by sleeping in on Sunday, but really you hadn’t done anything else for spiritual health so it really wasn’t self-care. It could be that you cut back on exercise–physical health–for good reason, yet it negatively affected another part of physical health, vitamin D.  Sometimes you find an ingredient you thought would work well actually doesn’t and you have to take it back out of the pot.  Sometimes while you are disposing of that ingredient another pot starts to boil over. Don’t forget you changed the dynamics of that one pot you took the ingredient out of so you will need to adjust the temperature!
Yes, but that is essentially life isn’t it? You have to add the chronic pain as well. You are right about that, we are handling that as well. Hopefully each of the pots and the oven are helping that. Chronic pain though, that is the tricky element. That is the part that makes the ingredients suddenly stop working so well. That is the part that says, “that worked for a while, but now, not so much.”
On the really good days the chronic pain is like the background noise of the dishwasher going. You hear it, you know it’s going on. You just try not to pay too much attention to it until it dings. When it dings that is when you find out that suddenly the soap you were using didn’t work or something got gummed up in the hose and the rinse cycle didn’t go off. Sometimes there is not even running water to wash the dishes by hand while all the other stuff is happening. Chronic pain does that. You find something and your brain says, “hey, thanks this is really working,” so it starts focusing on something else more pressing.
So essential pain management just becomes part of your routine. I can’t tell you when it happens, just that it does. I can tell you that I am never okay with it. Chronic pain just adds to depression and anxiety because you are constantly longing for what you cannot have. Things you used to do are no longer an option. It took quite a bit of looking around trying to figure out what I wanted to do. It took even longer for me to realize that what I want to do will always be in flux. Some days I am overwhelmed that my health issues are only going to get worse as I age  because they are degenerative. Degeneration is already an issue as you get older. It is just sped up in my case.
Some days though, I don’t care. I am enjoying the moment for all that it is. Those are the days that make all the above worth it. They balance out all the bad days where all the pots are boiling over there is smoke coming from the oven and the dishwasher just plain won’t work.
It takes a lot of self-analysis to make those good days happen. In the beginning, I fought that. Don’t look too closely. Don’t fix what isn’t broken. If it is hanging on by a thread and still working, it isn’t broken. There comes a time though that it just doesn’t work any more. Nothing about it works and self-analysis is forced on you. You have to sit down and look at it. You have to acknowledge the problem.
Slowly you realize that sometimes you could be a bit more proactive. For a time that is all it is. A thought. You don’t act on it. Then one day you do something proactive and you see it pan out that it fixed a problem you didn’t even realize was coming. I am not saying that before you know it you are doing this all the time. I am not. I know I am not. I know there is always room for improvement.
At the end of the day, that is what I tell myself. I think about the things I handled proactively and the things I didn’t respond to that I should have. Tomorrow. Tomorrow I tell myself, we will try again. We are not going to try harder because we are already trying our hardest. We will just simply try again. I can tell you that if you keep telling yourself this each night you will believe it. I can’t tell you how long that will take. It could take months. It’s harsh to think that, Months! I can’t take months! I need a fix now! So take a deep breath and remind yourself that slow and steady cooks the meal.

 

 

Tales of struggling with Anxiety

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It is just one of those mom things we do,think about what we have to do while we are driving. Sometimes though we get so lost in thinking about it we forget we haven’t actually done it yet.

Today as we were driving from the house we are staying at (while our plumbing is fixed)to school. I almost turned down the street to go to our house instead of taking the kid to school. In my head I had already dropped her off and was thinking about what I was going to clean first at the house. If the water was back on and if it wasn’t maybe I would do some computer work. Luckily my head was clear enough I turned the turning signal on which got the kid’s attention. ” Why are we turning?”  she asked. ” What? Um oh crap. Yeah school first.” I miss the days that she would just let it go at that. Not any more. Now its ten million questions about every thing that happens. ” Why were you going to turn to the house?”  ” Because in my head I had already dropped you off.”  Which then spurs her to tell me about when this kind of thing she does when she is thinking in her head. At some point, thirty seconds into her spiel, I tune her out. I found myself thinking.  oh god I can’t believe I almost did that. Yet again another reminder of how heartbreaking it is when kids get left in hot cars and how easy it is to happen. At which point my anxiety pipes up.  Remember. Remember when she was little during the summer you would sit in your car and stare hard at the car seat to remind yourself you had remembered to drop her off at daycare. OOOOhhh and remember those dreams you had that you had in fact been one of the parents to leave a kid in the car. Remember that. Remember when you woke up drenched in sweat and sure you had killed your kid by leaving her in the car. Oh lets also think about Sandy-hook and how those parents dropped their kids off at what they thought was a safe place. Okay she is never leaving my sight ever. Or if that doesn’t happen someone could break into the school or the hurricane brewing could send off storms that have tornadoes. YES!  A Tornado could hit today. lets think about that!  Because this is exactly what I planned to happen at eight fifteen in the freaking morning. Lets panic about things that happened nine years ago.

I don’t think enough people realize how close anxiety can be to post traumatic stress. How vividly it can make you feel that panic all over again. At the same time your body is starting to panic from remembering that panic attack. It doesn’t matter how many times I take deep breathes and say stay present. Anxiety is irrational is a motto I repeat over and over when anxiety is happening. It does help but anxiety is a bastard like that and it doesn’t prevent it from coming back.

I did manage to calm back down. I took a wedge of my ativan, not a full dose. I focused. I wrote. Then I go to scroll Facebook as a break because I got so much accomplished. The very first thing in my newsfeed is about a school shooting at a University. That Anxiety voice starts up again. Seeeeeee. SEEEEE didn’t I tell you. Go pick her up right now. Go get her. You have to get her to keep her safe. It is storming right now too. Seee I told you a tornado could happen today. The whole process of stepping myself down from panic happens all over again.

Clawing my way back up;Ten things of Thankful #10thankful

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I don’t even know where to start. I haven’t written all week not because I didn’t have anything to say or to get out. I did. I just couldn’t make any of  it make sense. It wasn’t even that I couldn’t focus long enough to put it in order, it just plain didn’t make sense. It all seemed so pointless. The sneaky thing about battling depression is it starts rising so quietly some times. I was taking my meds, I was taking time for self care. I was doing the right things. It was rising though and I didn’t see it. That is the other tricky part about depression. It is not always about being sad. I still don’t even know how to describe it, but probably best would be a total lack of motivation. A general feeling of not wanting to do anything at all. It didn’t help that it had started before I went off melatonin for a week. I do this so that I don’t build up a tolerance. I know its going to be a crappy week of sleep but it does honestly help. Add on top of that a building infection, still unsure if it was teeth or sinus. Once I realized that it was all kind of attacking at once, I started attacking back. That is the thing though, you have to realize it is rising. I couldn’t organize my thoughts but my thoughts were enough to make me realize what was going on. I can only be THANKFUL for Cognitive Behavior Therapy that I have done in the past that helped me realize what was going on. The frustration of my lack of motivation is what spurred me to really stop and do some CBT. I know others may be frustrated with my lack of desire to do anything but it pales in comparrison to the frustration I have for myself. I am working on that. I am a work in progress.

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First, I tackled the infection. I juiced some fresh turmeric, garlic, ginger, lemon, basil and cucumber and red onion. Just imagine swallowing fire and brimstone and you won’t be far off. It was painful to get 2.5 oz of it down three times a day but I did it. I started feeling the difference. The fatigue was lifting. The body aches subsiding back to their normal dull roar. I prefer to do things this way. It doesn’t interrupt my birth control like an antibiotic can and honestly I think it works a lot faster. Plus I don’t have to re-battle my candida issue.  THANKFUL for all I have learned about juicing and its benefits.

After eight days of no melatonin and one day of no benedryl either, I started having dreams I was in a boat. The boat was great, I was enjoying being out on the water. Then suddenly the boat was sinking. I could never find a hole. I could never find a reason. I found myself in this dream over and over. I would inspect the boat carefully, still it would sink. I even got down to a Johnny boat where I could inspect it out of the water. It still sank. I woke so congested that I think some of that sinking was signifying that I couldn’t breathe , not just the depression. Last night I took both and slept so so so so very good. Thankful!

Thankful that I had two interviews this week and several more respsonse to my applications. It seems most people have their summer nanny and are now looking for mid to late august. Not ideal but I will take it.

THankful I have friends who can and do help watch my daughter so that I can go on these interviews and even take some time for myself afterwards.

Thankful that Harp camp starts next week. We have definetely reached the part of the summer where we are both sick of each other, the kid and me.

Thankful for instagram. Yes I know it seems trite but it is true. I truly enjoy the photos and especially cherrish the #bereal ones. The ones that let me know that I am not the only one battling theses issues. I am not the only mother whith a kid who thinks she ruins everything one second and thinks she is the best mom ever the next. Lately I have also found some very helpful and inspirational quotes as well.

Thankful for my husband. He works tirelessly for our family and I can’t tell you how much I appreciate that. Not only does it allow me to be here for our daughter who won’t always need me quite so much but it has also allowed me to work on my own health and recover from the damage medicating to work did to my body.

Thankful for my readers. I didn’t write this week. I honestly didn’t think anyone would notice. I so appreciate the people who took the time to email me or message me and ask if they missed a post.  Just know that I am completely dedicated to Ten Things of Thankful so even if I hit another rough patch, I will always do a Ten Things of Thankful post. even if it is just to post one thing and use the SGV (seven guard virgins)dance to get out of the others or the SBOR(secret book of rules).

Gratitude vs Depression vs Anxiety

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I have participated in Ten Things of Thankful for a few months now. Sometimes when I realize it is time to write the post I am at a loss. The things that stood out the most were the things that went so very wrong.  Things that annoyed me, frustrated me. Things to be thankful for or grateful for, not so obvious. I started just writing down something every day. It wasn’t immediate but it slowly has turned me around. I still have my days that my first response is to be grumpy and grouchy and anti-social.  It is especially easy when it is grey and overcast and nasty out. Sometimes I can in the midst of things going wrong, find the good.  I might not be happy about it but I can admit that there is something good in it. Some times I am not feeling thankful for it or even grateful for it. Just acknowledging it is the first step.

The really magical part is, reading the other blog posts. People with harder struggles then me are finding good. It really does help my depression. It’s like it forces me to think and depression doesn’t really like it when you think. Depression just wants you to listen and believe. Anxiety likes to be irrational so it too doesn’t like you to think. When you start thinking, even if it is just acknowledging what you do have, depression and anxiety have less power.

Remember that game at the arcade. Whack-a-mole. That is what it is like fighting depression and anxiety.  Sad thoughts whack. feeling helpless whack. lack of motivation-whack. whack. whack. Oh no one is  poking up. Sigh of relief. This is it. I get to rest now. I beat it. Then suddenly five moles pop up.  Sometimes I find myself angrily whacking it thinking. THINK HAPPY THOUGHTS. It works sometimes but what works best. A deep breath and then calmly thinking of good things.  It is really hard to do that second part though. I still get anxiety that spikes my heart rate and causes chest tightness and can’t breathe and omg all the things. It is really really hard to force myself to breath. To speak over the irrationality of the anxiety.

The key for me is to write a thankful each day. Even if it is at the end of the day right before I go to sleep. I did it. I found one. I am victorious over depression and anxiety just in that one thought. That is how I have clawed my way out. One thought at a time. Repeating things over and over to myself until I am so sick of it that anxiety has no power over me on that subject. Sometimes it is watching my daughter on the playground. She will not fall she will not fall she will not fall(anxiety flash) no she will  not fall. But that didn’t happen. She did not fall she did not fall. Constantly telling my anxiety it is wrong.  When things do happen that I actually worried about, I have to remind myself I did what I could. I will learn and move on. I will not dwell. No I will not dwell. WHACK WHACK WHACK stop it. I will not dwell.  The more I do this the more I have been able to tell the difference between intuition and anxiety. When my anxiety is high, I have a hard time with intuition. I can’t think with my gut at all when anxiety is around.

It also helps to write what went wrong and then write but this happened because of that so this is good. Writing what went wrong and finding the silver lining is another whack.

One positive thought at a time, I am winning. One positive thought at a time, I am thriving.

In another step out , I will be participating in BE THE VILLAGE 1000 voices of compassion #1000speak

 1000 voices from all  over the world, on the same day flooding the internet with good, positive posts. Posts about Compassion, Posts about kindness, Posts about self-compassion. Posts about caring for others, caring for the environment. Posts about Non-judgement. Spreading love all over the world. This will happen on February 20th 2015.

You can participate even if you are not a blogger! Follow the hashtag #1000speak  comment, share, like, favorite. The main point being to interact!

If you are a blogger and would like to be part of the 1000 you can request to join here.

The truth about flares

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I often get accused of being a chronic complainer.I don’t post how i feel for sympathy. Sometimes just seeing it in black and white helps me.  I just need to vomit it all out so I can move on. Its cathartic. This is not to say I don’t appreciate the comments.

Chronic illness is an asshole. Sometimes it makes me seem like an asshole. Most of the time in a flare I feel like I am being an asshole.
When I am resting I still feel like I am being lazy. I still think you are thinking I am being lazy. You can tell me all you want that you are not. When I have to cancel plans there is a part of me that feels I am just making an excuse. I know, if I went the pain would magnify. I know it.

Chronic illness makes your anxiety triple. Anxiety is an asshole too. Anxiety over what I do get done in a day. Anxiety over what I don’t get done in a day. Anxiety over what others are thinking about what I did today. Anxiety often makes me feel like I am being a complete wimp.
I feel ridiculous saying my skin hurts. Or any other body part that is acting up.
I feel like it’s an excuse even when I know the pain is too much to push through.Dishes have to get done ,I know that. It would seem standing doing dishes should be no big deal. Standing is a lot more work then we realize. There is a reason it takes babies so long to learn. There is a reason they get tired easily from it. If I do push myself my hips,knees and ankles blossom into painful bursts. If I keep pushing my hands will start to cramp up.  Have you ever tried to wash a plate and had your hand cramp. Most times I break the plate. It would make sense to stop doing the dishes before that happens. That is the thing though, the frustration, you don’t want to stop.

I am just as frustrated about my body flaring as you are, if not more. My brain is still functioning and often going a thousand miles a minute. I am thinking of all the things I need to get done. The things I should be doing. It is even more frustrating to feel somewhat okay while laying down yet, within five minutes of being up doing things, you are exhausted and often shaking.

I have a tendency to emotionally eat. Yes I know I shouldn’t eat that but sometimes emotions need to be fed. I do try very hard to balance my emotional eating with healthy eating. I do aim for that balance. I know full well I will pay for it later. Sometimes I feel it is worth it. Sometimes later when I am paying for it, I think I was being stupid. Just because I ate it yesterday or last week or last month doesn’t mean I can eat it during a flare. I could have eaten it yesterday and today it makes me want to vomit. I could have had it at lunch and my stomach tolerated it just fine. Eating it with dinner, not so much. It can be as small as garlic or lemon or as big as chicken. There is often no rhyme or reason to it.

So there it is the cold hard truth about flares and complaining.

Ebb and flow of parenting with chronic illness

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One thing that eludes me is consistency. Some of that is A.D.D., some of that is just life.  Chronic illness doesn’t really allow for consistency. It is super annoying.  It bleeds over into parenting. When my illnesses are flaring or acting up, I tend to slack off on parenting. I know I do this.I hate it.  I dislike how much TV she watches while I lay in bed. It takes energy I just do not have, to keep on top of her.  I want to always be that mom who is fully involved and happily multi tasking making dinner while the kid is doing homework. It is just not realistic for this to be happening daily though.

This morning  Actually it started the night before, we did homework for hours. Why hours? Because I was resting. She was supposed to be sitting at the table doing her homework. I could hear when she got off task. I made sure to point it out to her. When she was crying for like the fourth time I told her to pack it up. We would finish it in the morning. She is a horribly early morning child  anyway so why not. This lead her getting up an hour earlier than normal,because she was worried about not having enough time.  Between slurping coffee and getting really frustrated she is not focusing. The guilt starts. The guilt that I should have been more on top of this. I should have. I should have. I should have.  This is what goes through my head. I know on one hand, that I could have done things differently. Then again, she is nine. She is old enough to be responsible for her homework.

It’s not like I don’t know it’s coming. It’s not like I don’t know its due. It is more like, It just gets set aside in the hurry of every day. We set it aside because this came up or that came up. We set it aside because I am not feeling well,  we will do it tomorrow. I will feel better tomorrow because I rested today and I am going to take it easy tomorrow. That by the way never actually happens.  Then suddenly it is due tomorrow.

We get her homework packet Thursday after school. We pour over it like it’s the newest gossip magazine. Look how many pages of math! Oh, look you get to do this! I have an idea for that! We really do plan on tackling it. Thursday we are good about filling in her reading log, including the summary of what she read. We mark down what flashcards she did in Math. Friday, we normally have a family treat. However on the way there I normally make her read her book. There is a fifty-fifty chance it will get written down when we get home.   Saturday, sometime after I arise from the abyss of sleep, around eight am I look at her homework packet. We might even tackle some of it.  Then the outside is calling because it is fall in Florida. It is splendid weather outside. Not cold, not hot, windy but not windy to make it miserable.  In other-words, paradise. Sunday morning is out because church. The next thing I know its Monday. When I pick her up it’s all gusto. We are going to get it done. She reads. She does math. I am knee-deep in making dinner.  “Yeah I don’t care what you do. OUT of the Kitchen!” We have tomorrow. We will knock it out tomorrow. You get the picture.

Sometimes at the end of the day, I think “yup, nailed it today.” I got work done. I got the kid fed,to school-fed and in bed. I took time for me. Go Me! Then there are other days that at the end of the day. I think : ” Well breathing was really hard today.”

I think sometimes us chronic illness sufferers give the wrong impression about flares. Sometimes, it really is a flare and we never even saw it coming. We went to bed. We woke up having a new sympathy with road-kill. Most of the time though, it is not like that. I have weeks where I really feel on top of it. I have medicated at all the right times. I haven’t pushed the limits too far. I have eaten healthy and slept decent and taken personal time. Then it slowly starts off. By slowly I mean like from one day to the next. It just slowly one thing after another stops working. The medications are not as effective. I have more muscle aches than joint aches but I am still treating for the joint aches. Maybe what I did one week didn’t push the limits, so I do it again the following week. Uh oh. Limits reached and exceeded. What? I just did that!  I ran later than expected grocery shopping or cleaning so I had less me time in the car waiting to pick her up. It just slowly builds. Those kinds of flares are easier to recover from. It is like a light goes on and I am able to fix things. I start medicating  right. I give a little extra self-care. The times that it just WHAM! BAM! No thank you Ma’am. Those times we dread because so much of the time, we have to wait it out.  I can try to medicate. I can try to listen to my body and see if there is some craving it has. Most of the time, it is waiting though.

How do you parent when you feel like that? How do you parent when it’s not consistent?

You learn to go with the ebb and flow of your illness’. You learn to ebb and flow parenting. You learn to take advantage of when you do feel good.

I am still working on it.

My little activist in the making

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My daughter’s anxiety level has been rising. I knew she needed a good snuggle time. It is one of the parts of chronic pain that annoys me, the lack of snuggling I can do.  Last night I knew she needed it more than I needed less pain.

She came in to my room in the middle of a Law and Order SVU episode. This is not something I normally let her watch with me. This episode though dealt with some humanitarian issues.  I had made a promise to myself recently. I needed to stop sheltering her quite so much from reality.  I am not turning down NPR as often as I used to. My response now is not always , ” That is not something you need to worry about.”  So we discussed women being forced into marriage. We discussed how other governments are not run like ours. They do not protect the people like ours do.  We discussed how in the end the woman got  her papers to stay legally in the United States but refused. She knew it was possible to get justice now.  I was really impressed with her understanding of the basic concepts. I was also really impressed I could carry on such a conversation at seven thirty at night. Where did THAT brain come from? The episode ended.  I decided that was enough of that kind of talk.  We switched to Animal Planet.  In an attempt for mindless tv for the last half hour.

We succeeded with mindless TV for the most part. We were watching Call of the Wildman.  There was the commercial for Redwood Kings.  A fairly new show on Animal Planet.

” I don’t like that show. They are mean people. Those are rare special trees and they are cutting them down. That hurts the animals and the trees and everyone. It is not very nice.” My daughter comments.

I am slightly baffled that she knows so much about Redwoods. I am slightly baffled that she has come to this conclusion on her own. I am not really sure why it baffled me. She has always been a highly sensitive person.  She has always been very nature oriented.

Somehow I found myself back in heavy conversation with her about this.  I found that she had found out about Redwoods through National Geographic. Of course, she did. I know she is constantly on that website. She watches full length documentaries from there. She loves reading the magazine itself.  Of course, she would know about them.

Then just like that, she is on to a new subject.

“Mommy know that stuff that comes in a can that you turn upside down and its all white and fluffy and airy.”

” No, no I don’t.”

” Sometimes people put cherries on top.”

” Oh whipped cream.”

“Yeah I wish we had some whipped cream.”

I turned off the TV and we snuggled down into bed.  She may only be nine years old but, I see a budding activist in her.

 

No one asked you paranoia anxiety!

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Okay so technically there is no such thing as paranoia anxiety.  They are two separate conditions. It feels the same though. Anxiety can mimic paranoia in a lot of ways.

Anxiety often has you thinking very negative thoughts and sometimes even believing the negative thoughts. Paranoia you can’t see that its a delusion. No amount of therapy can help you see that lie.  So I know, after years of therapy, that it is in fact just anxiety.

I really hate though when it gets that severe. I start wondering if other people are reading my text messages. I have not left my phone anywhere. Then a voice in the back of my head says, “oh but they have technology that allows that.”  When its really bad I can get sucked into that and really disconnect from people. This normally leads to a depression. Luckily last night I was able to recognize it for what it was. I listened to some meditation, made fun of it and tried to move on.  It is not as easy as that makes it sound. It took years in therapy and wanting to move past these hurdles. I read books about retraining your brain. I use meditation to help me focus on positive thoughts. Positive thoughts help drowned out the anxiety.

No matter how good the medication combo is, no matter how much therapy, its always going to be there. I just have to remember that. I have to remember that its not always because of something I did. I wasn’t eating as healthy, sleeping as much, or whatever. I know my triggers. I know I hit some of them on our vacation. It took a lot last night to be able to make fun of it. It took a lot to pull out my toolbox for fighting anxiety. Sometimes I tell myself to just go through the motions. Somewhere along the lines, it does actually start to help.

It’s not completely gone today, but it is better. Writing helps. I will also probably go through our vacation photos and edit some. It always makes me happy. I will only have positive shows on today. Things like food network or something similar. This is opposed to my normal Law and Order or Criminal shows. They are too negative to watch with anxiety flaring. I will make it a point to go outside when the dog needs to go. Sunshine really does help. Even just five minutes outside can be so helpful.  The other thing I will make sure to do today is hydrate.  I have been drinking some soda but I will counter it with water. For every oz of soda I drink I plan on drinking two oz of water. If I could get past the fatigue from our vacation without caffeine I would. Well honestly I would try.  I doubt I would succeed at that.

LET ME OUT… Aka Week Six of Summer Break

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I really don’t know what to say. It has been a whirlwind. I am ready for a break and I think this week we actually slowed down quite a bit. Its not all bad but the days are super long and tiring.  Its hard to balance what the kid wants to do, needs to do with what I want to do and what I need to do.  Its not entirely different from what happens during the school year. I just seem to have less patience, its probably the heat. It takes it out of you when its ninety something by nine am and still in the nineties at eight pm. Between normal housework stuff, chronic illness stuff, and kid meltdown stuff , it gets a bit overwhelming. Never fear though, I wouldn’t change a thing.  So here is what actually happened this past week:

Sunday July Six.

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Blissful kidless morning. Church… and more kid free time in the afternoon. I would say it was blissful but Saturday night I slept horrible. I mean horrible, like I would have preferred a screaming baby horrible. I came home from church. I looked at the dishes and the cleaning that needed to be done. I laid down on the bed. I barely remember pulling the covers over me. I woke a few hours later and basically went to the bathroom, took a sip of milk and was out again. The vibration from my phone woke me up. The kid was on her way home.  Luckily the hubby was able to make dinner and do most of the parenting. The kid did hang out on the bed with me but I was not NOT up to getting out of bed.  It did not help that there has been a storm cell that brewed, growing and shrinking growing and shrinking in the ocean, it finally let down and rained.  Once it started raining I started feeling more and more normal. I woke up with that all over skin sensitive sensation , nothing can touch it without intense pain, and an anxiety attack.  Oh good just in time for bedtime.

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I am thankful I have friends that understand and help when and where they can. Believe it or not this type of crash is actually a good thing… it means the flare I have been dealing with is finally really truly curving off.

Monday July Seven

Three mile walk to cleaning job about killed me. The kid read her book. Then it was a flurry of activity to get ready for the car. Housework to burn some nervous energy. I am really proud I did not have a panic attack. We got the car and I actually had to pull over and have the panic/anxiety attack from not having one prior to getting the car.

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Tuesday July eight

The weight did not come off until we walked out of the DMV with the tag and title now in my name. I needed to just relax. We had so much time to kill as it took way less than expected. We went and checked out the Rookery as we had never gone when it was early morning. We thought maybe the bird behavior would be different. It wasn’t much. We went to Panera and had celebratory bagels and I got a big honking Sweet tea.

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We then headed to the library. When the kid points out a park we have not been to in almost two years. Mom can we check that out? Do we still have time? SURE!  It amazes me the changes we saw.  We even saw deer hoof prints. The kid tried out her tracking skills and declared they were fresh. Works for me, I have no clue.

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So then we go off to the library. GUESS WHAT???? I had the wrong library on my calendar. The one the Rainforest puppet show was at? Twenty minutes away. How much time did we have? Oh, it starts two minutes ago. I debated not going. It was not even an option for the kid. Of course we were going. Man. It was AMAZING. It was wonderful. She talked about conservation, She talked about endangered animals, loss of habitat, what the rainforest provided the Earth as a whole. She was captivating. She used Portuguese and Spanish words for the animals and colors. She talked about the cultural of the people who live in and around the rainforest.

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We decided we were not ready to go home. We wanted to explore the area like we were going to when our old car broke down. We found a new park. Oh man did we find a new park.

We are going back at a better time. Better time being early morning to beat some of the heat as eleven thirty am is NOT the time for a hike in Florida in July. We still saw some cool things, tortoise, eagle nest, iguana(huge lizard, not sure exactly on type)

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We didn’t exactly have hiking shoes on. No worries. I survived plenty of barefoot summers in Florida. The kid was really into it and we had a whole conversation about Earthing.

Wednesday July nine

It dawned on me that all the walking we have done since the car breaking down almost three weeks ago, has been with intent. It was fine as a change up for a week. Walking is my stress relief. Walking in nature more so.  This dawned on me late Tuesday night. I immediately made plans to go to a park for a hike Wednesday morning. I had a hard time falling asleep Tuesday night because I was so excited. It was nothing short of magical.

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It was beyond exactly what I needed.  We saw a total of eleven deer.  A hawk  landed in the tree right next to us. We saw two wild pigs.  Magical.

We came home ate lunch and rested. There was a snake and reptile show at the library. I felt good enough I thought. Its just an hour.

So wrong.  Bedtime started at four pm.  Of course it was hubby’s game night so dinner and all that crap was on me.  Somehow I made it.

Thursday July ten

Math tutoring day.  We were off and running. While recording her math tutor lesson, I wrote out her writing prompt instructions for the day. I am really happy to say she is really starting to enjoy her math lessons and is gaining better understanding each week!

We were off and running hubby to the ortho doctor…. checking on his thumb. While he did that, we went to the natural food store. We have been out of Natural Calm and DHA/Omega3 supplement. It was obvious we needed it STAT this morning.  They had samples. Most of the samples made me happy. One I wanted to try had corn oil in it. True it was Non-GMO but I don’t think my corn intolerance really cares about that part of the corn.  The kid worked on her writing while we were sitting in the car waiting for hubby to be done.  We decided on Burger King for a special treat for lunch.

THEN we had family naptime.

It was mostly rest time the rest of the day.  The kid finished her writing. She also had to get her hour reading session in.

Friday July eleven

Someone really must have given me crack or something. I agreed to take hubby to work and then thought since I will be up, we should go on another early morning hike. I have to say…. it paid out.

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Towards the end of the hike she was getting irritable and tired and cranky. I thought about tossing her in the bay….. instead I just tickled her and said ALLIGATOR. To which she ran ahead in a fit. Ahhhh Silence…. Oh I mean… yeah…that probably wasn’t nice.

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The insanity started at Target. I know I know. It was not their fault though. Insurance was being super weird and stupid and thus, waiting another week for medication. Paid a Doctor Bill, always a big occasion.  Home for lunch and rest time. The kid had Math to do. I had a church meeting to go to. She sat in the other room and read her book, mostly.  A quick very sucessful trip for a birthday present for the party we go to Friday.  The rest of the day, rest. I am trying to remember just because I am feeling better doesn’t mean that a Flare can’t happen.  I am trying to remember it is better to pace myself, and her. That resting is productive for the chronically ill.

Saturday July Twelve

I had hoped to go to the beach first thing in the morning. Morning came and neither the husband nor I were really feeling it. We were not feeling like doing much of anything. After all isn’t that what Saturday mornings are about. So we have just been loafing around the house.

Later we will go to a friends house to celebrate their son’s eighth birthday. The kid and him are eleven months and two weeks apart. Yes we figured that out! It’s hard to believe our sweet little babies are getting so big.  They really need to stop growing so fast.

The real cost of being sick

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 There is so much more to chronic illness expenses than doctors appointments, tests, and prescriptions. Those are the more obvious expenses. Those are costs that you can control to a certain extent with the type of health insurance  you have. These are some of the less obvious costs…

Lets start with diet.  I don’t mean the kind of diet you go on when you want to lose weight. I mean the kind of diet that completely changes how you eat. I won’t say that I avoid trigger foods altogether–I am human. I know [emotional? you just said “eating” which is good!] eating it is not the best idea, but sometimes it’s emotional therapy.

Many times the prescriptions that people with chronic illness take can cause digestion and gastrointestinal  issues as well. What that means for me is I can not rely on a good quality multivitamin to catch any lapse in diet. A good quality highly absorbable multivitamin can cost fifteen dollars or more per month.

The reality is fresh fruits and vegetables cost almost twice as much as canned or frozen fruit. Why is this an issue? Well this ties into the digestion issues. Many people with chronic illness cannot process the additives, extra sugar, processed sugar, and preservatives as well. This makes canned and frozen fruits not the best choice. I am not saying I never get these but its not my preferred choice, and I always have more issues after eating these foods.  I am lucky in my diet the only issues I have are preservatives, additives, lactose and corn.  This still makes it difficult, it could be so much worse.

While my family normally tend to be fairly healthy eating to begin with even before I got sick, it’s not even a choice now. It is how we have to live.  This is not necessarily a bad thing, just another hidden cost people don’t think about. I did do about six weeks of juicing with fresh fruits and veggies. It worked really well, and I did feel better. It cost me  about forty dollars a week. When it came down to it, I had to start focusing on making sure my family had enough groceries for the week and not just enough to juice.  Its great to juice or make smoothies, but I still have to feed my family.

Next we have what I like to call my toolbox. A list of things that you can do to help alleviate some of the chronic pain that goes along with chronic illness. Oh just take an Epsom salt bath every night. I use Icy hot and love it. Pick up some Tiger Balm. Pain patches, supplements, and exercise are what helps me.  It is one thing to say that but here is the hidden cost.  To be effective you need to use at least a cup of Epsom salt per bath, while recommended amount is two. At one point in order to take a just plain Epsom salt bath every night I was paying roughly fifteen dollars for salt each week.  This is just plain epsom salts. This was not for the ones that have added benefits of lavender or menthol or eucalyptus, rosemary or ginger added to them.  Not to mention its not like I can just jump into the bath tub any old time I need to.

Then you also pick up a variation of rubs, creams, and ointments. Each of these run from as cheap as five dollars up to twenty  bucks each. Since we often use them multiple times daily, we might get a week or two out of a tube or bottle–if we are lucky. Pain patches, however wonderful they are, are one short use and they are done. Five dollars for five patches that if you stretch it can last you four days. It gets to a point that you can easily be spending fifty to sixty dollars a month on these kinds of things.

There are some more natural remedies that you can take to help bolster the prescriptions that often you have to take. I have gone off a lot of prescription medications and have gotten down to my bare essentials so to speak. My bare essential prescription cost is about  [$150] {or} [One hundred fifty] every three months.  It was almost that a month at one point in time.

It is easy to say “go pick up a supplement.” Looking at quality matters a lot here. Turmeric, which is great for chronic pain, is a minimum of ten dollars for a month supply. Then often people in chronic pain use Magnesium which can be relatively cheap, again the type and quality counts here. The one I have had the best success with is fifteen dollars a month. I use a strong omega three supplement as I have both heart issues and mental health issues, and that helps with both.  I also take Melatonin as opposed to a prescription sleeping aid.  It is not hard for me to spend fifty dollars or more on supplements [a month? how long?]. Fifty dollars is where I am at right now with just the basic cannot-do-without supplements.

This is really just the first layer of unseen costs of being chronically ill.  This is not even taking into consideration that the kind of mattress you sleep on matters, keeping shoes fresh and supportive by changing them out every three to six months.

This does not even take into consideration that people that have chronic illnesses tend to not be able to work but yet not meet the terms for disability through the government.  I am lucky I have decent insurance and my costs are low comparatively speaking. Shockingly enough, to many the answer is not through medicaid, I actually paid more and struggled more going through the medicaid system.  The stress the system puts you through to jump through the hoops to get what you need……it’s unbelievable.  Even with the good insurance we have now my out of pocket expenses are anywhere from 100-150 a month. This is not including prescriptions that are significantly cheaper with insurance.  This is what I have it boiled down to as essentials. It could easily be twice that.

I often deal with people who are very flippant about my chronic issues because they are not visible nor are they the same from day-to-day.  To date my diagnoses are: Myofascial Pain Syndrome; Chronic Fatigue Syndrome; Fibromyalgia; Degenerative Disc Disease of cervical, thoracic , and lumbar spine; Irritable Bowl Syndrome triggered by a corn intolerance; Supra-Ventricular Tachycardia;  Raynauds; malabsorption of Vitamin D, Potassium, and Magnesium; severe outdoor allergies which borders on allergic asthma; OCD with tendrils of ADD.

I don’t look sick. I don’t like to talk about being sick or what I can or can’t do. If I am discussing it in detail with you, I trust you a lot.  I am not willing to continually prove my conditions to people over and over. What would I do to do that? Carry X-rays and MRI reports and blood test results around with me constantly? I am not being lazy or taking the easy way out and yes I can read that in your eyes. After dealing with Doctor after Doctor after Doctor who did not believe me, I can tell exactly who does and doesn’t believe me. Some of the disbelief comes because I was super active and really did a lot one day. The next day it takes everything I have to get out of bed. I am paying for being so active. When you have a kid, you tend to push yourself to do more, for them.

I have gone through the disability process with the government. Essentially they believe I have the issues I have but because I can parent to some extent and function to some extent, I am not disabled. What I was doing when I was working and trying to parent was not functioning.  I was a mess. I could not enjoy any time with my daughter. I focused on getting through the day til I could medicate and hopefully sleep. I had no quality of life, not to mention the immense damage to my organs that the prescriptions were doing. It has taken two years off of three medications to get my liver and kidney functions to somewhat normal levels. TWO YEARS.

It has been a long hard road to get my health back to some extent.  We are lucky that we have family and close  friends who understand and help us. We are functioning, barely, at a fourth of what we were earning when both of us worked full time, and this is with my husband working two jobs to help support us. If anything ever happened and he could not work, we would be completely screwed.

************************************** some exciting news in store***********************************************************

 

Below is a brief outline of the campaign, which illustrates what we’re trying to achieve and how people living with chronic conditions can help.

 

Via the “Hidden Cost of Chronic Illness” campaign, Debt Advisory Centre aims to raise awareness and visibility of the challenges faced by those living with chronic and ‘invisible’ conditions. We’re also conducting our own research into perceptions of chronic illness, especially in relation to the work environment.

 

 

We’d like to know the following about the patients that use your services;

 

  • How long they’ve had their condition.
  • What their specific condition is.
  • How it affects them (professionally, socially, emotionally)
  • What things they have to purchase in relation to their condition.
  • What other financial disadvantages they face.
  • Roughly how much they spend per month in relation to their condition.
  • How they feel others perceive their condition (employers, friends, strangers)

We’re keen to gather as much user-generated content as possible and welcome contributions via email and video.

 

Once we’ve gathered the information, we’ll combine it with research we’ve conducted ourselves and research supplied by other organisations ourselves. We’ll then be distributing and sharing those findings with the media.

 

Patients can find out more by visiting the campaign page http://www.debtadvisorycentre.co.uk/advice/Illness-and-Debt-What-are-the-Hidden-Costs-of-Chronic-Illness-0-4163-0.html

 

Please note, if you aren’t already aware, that Debt Advisory Centre is a fee-charging debt solutions provider and not a charity.