Tag Archives: mental-health

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.

 

 

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Compassionate acceptance of love (#1000speak post)

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Compassionate acceptance of love (#1000speak post)

Growing up I was told boys loving boys was wrong. Girls loving girls was wrong. Thinking you were a boy when you had girl parts was wrong and vis versa. I was told you don’t question God.God didn’t make mistakes. I never really gave it much thought until a friend came out as a lesbian. Now what do I do? I like her as a person. She is a great friend. According to the religion I was part of at the time, I was not to associate with her anymore. She was openly admitting to a “sin” and not trying to change. When I turned to the church for guidance , I came away feeling like I had done something wrong. I had such immense guilt for wanting to keep the friendship I had. To turn someone away for being who they were was just not part of me.

It took me a long time to work out how I felt about love being love. I had to work past these stumbling blocks I didn’t even know I had. It was not to be talked about so I found myself stumbling. I was lucky to have a friend who was willing and open to let me stutter it out and really dissect how I ,personally felt. I felt a openess and acceptance that I had not felt when I turned to the church. There was a lot of back and forth. Was she born this way? Was it a choice? I saw her dating guys was she faking it? How did she see me? Was she attracted to me? What was her type? Did she have a type? Is this something she was trying out? Didn’t she want babies? She not only explained most of it calmly and openly but she also questioned me back.   Are you sure it’s what you believe or is that just what you have been led to believe? It wasn’t easy and there was definitely squirming in our seats on both sides. We were both works in progress, still are.

It made our friendship stronger. I like to think it made us stronger as individuals as well. However, that was not the end of it. Later I found out that she was holding things back. She told me, Saying that I don’t approve of your choices but it’s your life isn’t acceptance. It is not compassionate. In fact it made her feel guilty, like she couldn’t share everything with me. She wanted to have girl talk and relationship discussions but  when she did she felt very judged. Here I thought I was being so helpful. I was making it worse, which was the opposite of what I wanted to do.  The opposite of what I thought I was doing. I had put conditions on my acceptance and thus our relationship.It wasn’t all one-sided. We had an open and honest enough relationship that she told me about some choices I had made that she didn’t agree with.  It was shocking to me that she actually didn’t approve of some of my decisions. I had not felt any disapproval from her.I never felt judged. She always seemed genuinely happy with whatever decision I made. That was when I realized she was mixing compassion with her acceptance. I am glad she was openly honest with me about her sexual preference. I am glad she was unapologetic about it. It really made me think.  It was easy to say no it is a sin and not acceptable when it wasn’t personal. I didn’t have to think much about it. I realize now how unusual that was for someone to be able to openly and unapologetically say this is who I am take it or leave it. It wasn’t easy for her but she had gone through her own storms to come to the point she was at. We are no longer such close friends. It had nothing to do with her sexual preference. Sometimes you just drift apart. I am forever thankful for the friendship we did have. The learning and growing I went through. Perhaps those lessons were the whole reason she was in my life to begin with.

It wasn’t until I started trying to think compassionately about others decisions that I realized how wrong I had been. Acceptance needs compassion to take the sting out of differences of opinion. Without it acceptance doesn’t mean nearly as much.  As much as we say we do not care what others think, we do. On some level we do. We may not even be conscience of it. The point is, I realized that in order to be accepting of others, compassion is integral. Compassion for myself as I explored what I really truly believed. Compassion for what she was going through and her feelings. True acceptance of someone for who they are is wrapped and entwined with compassion.  As you go through the journey you realize sometimes acceptance is leading and sometimes compassion is leading. At some point you realize they are no longer entwined, they have become one. In the end though there is just love. Love for a friend. Love for another human being. In order to accept that love is love no matter what circumstance requires acceptance at every turn and a blanket of compassion.

 

Join us as we spread warm fuzzy feelings across the interwebs every twentieth to drowned out the sad and horror and bad stuff that bombards us every day. Write and link up, read, comment, share, it all matters. We are not looking to make big huge ripples. Little ripples are much more effective and they can amaze us with their power.

A right proper pity party or Ten Things of Thankful?

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I could sit here and think of all the things that should have happened this past week, but didn’t. I could throw myself a downright proper pity party.I probably could even make it coincide with the regular Florida summer afternoon storms. After all what pity party is complete without dark clouds and rain?  I could do that or I could change my thoughts. I could focus on what DID happen. I could just let go of those things that didn’t happen. I could let the negative things slip through my fingers like sand and hold on tight to the positive nuggets that dotted my week. I could reach up and bat away those dark clouds and find the light. I think I will do that instead, that sounds so much more lovelier. So off I go to sift through my week:

1. Raise

Hubby got a raise again. This was his yearly review raise. Still it helps!

2 Hair to locks of love

I have decided to grow my hair until December and then donate to locks for love. This made me very happy with what I am currently doing with my hair. I have been debating getting it cut.

3 Successful hair cut

I think it was two years ago now , my daughter had a full out panic attack when she was getting her hair cut. Ever since then she is a mess whenever I brought up the subject. I finally reached my limit and was like no its time. I am fairly certain it has been over a year. No panic attack today!!!!

 

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4 Awesome nature trail discovered

On Monday we went north a bit to discover this sustainable village. The website and the presentation I watched made it seem like it was a good idea. Instead it was such a disappointment.  HOWEVER, I had also discovered a short nature trail so we decided to do that as well. I am glad we did. It was such a neat little place!

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5 Amazing art work completed by the kid Henri Matisse

I am truly impressed by her artwork. It was a free class hosted by the Library through a teaching artist association.

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6 Groceries!!!

Okay seems silly but still. Some we were given and even though it wasn’t stuff I normally would buy it also wasn’t wasted. I mean what a shame to have to use the bacon right away. Oh darn.

7 Extra cleaning job

I unexpectedly got an extra cleaning job. This past week was super tight because it was a rent week so it was extra helpful.

8 Big changes at Church. Silver lining

Ah this is one of those things. You know change has to happen. You know it does happen. However I don’t always like when it happens. Still this is probably the most active I have ever been in a church. It is also the one I have felt most free to be me in. Unitarian Universalists, I wish I had found it when I was in my teens and twenties. However silver linings are important to find in the middle of huge changes. I won’t say there are not any, because I know there are. I am just having a hard time right now finding them. In theory the changes sounded good, in reality they kind of suck. I am however determined to stay the course and investigate what new things are in store for our church.

9 Synched calendars!! Finally

 

Okay so this is actually quite a big deal. I didn’t do it earlier and it recently bit me in the bum. I realized I was double booked for things. One fun and learning and one a responsibility and one I can’t shirk. I sat down last night and synched my home calendar with my phone calendar all the way until the end of July. Now here is hoping our fun classes and my meetings won’t clash again. Oh and I double checked the locations so hopefully we won’t be showing up at the wrong library to any of these classes either!

10  at least one job applied to every day

I am not happy that I haven’t found a job. I am happy though that I have found a minimum of one job every single day this week to apply to. A few of the days I applied to three or four jobs.

 

HA! I found ten things I am thankful for this week. Can you? I bet you can if you really look with a different perspective from what you have now!

Sparkly happy on a cloudy day TTOT #83

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Ten Things of Thankful

Well it is Wednesday before I have even started this post.
In my defense I have been really busy. There was playing with baby goats, and working, and walking and more working. Some house cleaning, some waiting on repair man. Oh and a parent teacher conference and that was just Sunday to Wednesday.

Honestly Monday was a crap day. Outside it was grey and dreary and foggy. In my head it was black and thundering and foggy too.

It is however my first item on my list of thankful’s. Being that it is now Wednesday and I can look back. I am thankful for the bad days because I can see how far I have come. They are just days now. Not weeks. Not months. Days. Sometimes there is no plural to that word, as in day!

Let’s back track a bit though. Sunday the besties were coming over and the house was a mess. Fast thinking as I am. Lets take some carrots and whatnot down and feed the goats. Easily we can spend enough time there and then walk to church. Oh had I only known how fantastic this would be. I would have brought instant hand sanitizer. We got to the goat pasture and they were penned up inside the pasture. However when we had walked by the barn we heard people talking. Let me just go and see if they will let the goats out. Farmer Brian did one better. He let the girls come back and go into the pen. He showed them how to pick them up after you pinned one down. Goat kids are pretty darn fast. The giggling, the petting, the naming of the babies. Oh so much fun was had. Farmer Brian even had a bit of an ulterior motive. He let the girls catch the ones he wanted to inspect. OOOOOOHHH the squeals! To be helpful and have fun. Well nothing beats that.  However it was a good ten minute walk and I felt like I must have said 100 times.Don’t touch your face. Keep your hands where I can see them. AS soon as we got to church they were marched into the bathroom for a good handwashing.  Despite our best efforts. We still brought goat poop to church on the bottom of our shoes.

Of course there are pictures. I will only share a collage instead of the 35 I took in twenty minutes! (thankful ten,I was still able to enjoy the girls joy and still feel I had adequately documented it for treasured memories later)

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Thankful two is this awesome project that has brought me so so so much happiness and mood boosts and joy already.

#1000speak

Compassion has been something that I have been dwelling on more and more. When Lizzi tagged me in this project. I just can’t even describe how fast my brain said. THIS! Compassion for others and what they are going through.Compassion for myself. Giving myself just as much compassion as I would another. Just stopping and instead of instantly judging and being sassy and sarcastic to look at (fill in blank) with love and kindness. (Thankful nine is for perfect timing, a lesson I am still learning)

Thankful Three is a fantastic Parent teacher conference. I didn’t feel pressured to get my daughters learning disabilities diagnosed or to have her medicated.(thankful eight)  There was a free flow of communication and I really felt empowered leaving that conference.

Thankful four is a working dryer. Oh my gosh how much this makes me happy is ridiculous.

 This brings us to Thursday.

Oh look I forgot to fill this in,  but am too lazy to go back through and change the post.  Thursday I got to see two hawks rather close. They are so regal and gorgeous. They have a quiet look of arrogance that only a bird-of-prey can have.

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(Thankful Seven)

Friday…

The day I decided not to function to loose myself in the vampire diaries and go to my reading spot extra early.

I had clawed my way out of the dark stormy turmoil of Mondays brain and the weather seemed to mock Me. Here I was happy and content. It was grey overcast and foggy. I could sit in my parking spot look at the three trees feel the cool breeze and the baking feeling of the sun. As I sit crossed legged in my car with the windows down because fuck you hips and knees and ankles. Until it brings tears to my eyes to do it -I will sit how ever I want not how arthritis tells me to sit, even if I have to hand maneuver my limbs into place. I could appreciate the beauty. I could say, yes I know I am teetering on that edge. Several years earlier I would not have even realized I had wandered off the path let alone was lost. (thankful six)It doesn’t make the depression feel any less imposing. The problem with depression is it always wears you down…I know I will always have a day where I just can’t function. I don’t want to function so I have nothing to fight it with. I often know it is coming and fight to get it to a day where just maybe my world won’t fall apart if I don’t participate for a day. I can do all the deep breathing and meditation I want it just makes me sleepy but yet I won’t sleep. In the days before that no functioning day I feel myself grasping desperately at my self help tools. Sometimes I even feel them slip between my fingers despite my tight grip.they ooze through my fingers incredibly slick and slimey and smooth all at the same time.  That day of not functioning I read a lot of blogs. I read books I watch mindless TV. My thoughts don’t often bring me to tears. I have found I have to watch super sappy TV shows to cry to.There fore I am not crying for myself but for the TV show. Yes I am crying for those TV characters not myself. Perhaps if I could here and there cry I could avoid a no function day. That however did not happen so as odd as it may sound. I am thankful my nonfuctioning day came on a day I was able to be nonfunctioning. That is thankful five.

So now that I am only at five. Time to go through my week again,thus numbers that seem out of order-but are not.

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.

Why is there no in between sane and not sane?

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Recently a friend of mine was feeling off. She called her therapist and after speaking with her therapist it was decided she should go to the mental health hospital. She was not suicidal. She was sent away. She was essentially sent away because she was not suicidal so therefore fine. We were discussing how this is so vastly unfair. Further reflection led me to say, “This only goes to further feed the mental health stigma. You are either sane or not sane. There is no in between.” I know most of that boils down to funding. I am not finding fault with the mental health hospital itself. It is the system. It needs to start from the highest level. Government needs to start stating openly, mental health is just as important as physical health.

When I worked in probation I saw how broken the system was. I saw how many probationers were really mental health clients that could not receive help. Most often I heard they will give me medications but they won’t give me therapy. This in turns fuels the stigma that there is a “magic” pill that fixes the mental imbalance. While medications are part of the answer. They are not the only answer.

Mental health tends to be more like a puzzle. The problem is it is not just one puzzle. It is a puzzle based on each individual. Finding out how that person’s puzzle can be put back together , is the hard part. It also doesn’t help that you can’t glue the puzzle together so it stays together. It can and often does fall apart and has to be reconfigured. This makes it frustrating not only to the Doctor treating it but, also the person dealing with it. It is easy for the person dealing with the mental health issue to think there is nothing wrong. The system really does encourage that. I know this all too well.

I am estranged from my Mother and youngest sister. I  had already been in therapy for  four years by the time the ties were cut. When it was pointed out that I was relying on medication in order for me to deal with this situation I knew something had to be done. If nothing else this showed me how toxic it was for me. Not just emotionally, physically as well. No medication is completely side effect free.  I had chronic pain issues on top of this. My kidneys and liver were not happy.  Where as physical abuse is so much more obvious, Emotional abuse is much more subtle. Verbal abuse as well. We tend to tolerate a lot more from close friends and family than we ever would others. It came time though for me to love myself more. I am not going to get into the specifics. It is not for public consumption. The details don’t really matter to others.I often reflect on the situation. I do hear things here and there. What I hear still convinces me it was the right decision. We need to realize that emotional physical verbal and social all tie together in our health. They can not be out of balance.

Three years later and my kidneys and liver are back within normal ranges. I am on much less medication. I am aware I won’t get completely medication free. I understand it is a chemical imbalance in part. I am also completely okay with the fact that I will probably be in and out of therapy for the rest of my life. I don’t understand so much of the stigma around admitting to a mental illness. I don’t understand admitting an imbalance and working to improve that imbalance being a weakness. It is something that has to start from the top levels of our government AND from the bottom level of every day interactions with people. It is way past time for us to realize this.

I struggled with this when I was on medicaid and dependent on the system for my mental health care. Luckily I had years of private insurance therapy first. I knew what I did need and what I didn’t. Still they tried over medicating me. I won’t lie, I did go along with it for a bit. It took me a while to realize that over medicating is just as bad as under medicating. It is a balance. The problem is when you are in the middle of psychosis and are over medicated, it is really hard to realize that.  It is easy to see why people go off medication. Over medication made me feel like a zombie. It increased my brain fog. It made my mood swings even more unpredictable.  I was lucky that we were able to get back on insurance. I was lucky that I found a physician who listened to me. Who was willing to fine tune medications to the right mixture.  Having gone through the medicaid system I know how hard it is. I understand how broken the system is.  I had to go off all my medications for two months because I was not suicidal. They didn’t know how long it would take me to get through the waiting list. I was just needing maintenance.  The problem is if medication is part of your maintenance and you are denied that medication, you are no longer maintaining.

We need to fix our broken system in all the areas, not just physical health. We need to let people know there IS an in between. There is a work in progress level. That mental health is so much more than sane and not sane.

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.

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.

 

Don’t be so hard

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It occurred to me today that I have been unreasonably hard on myself. I have been wondering why things I used to be able to do are such a struggle lately. It was only in discussion over some of this with a friend that I realized the difference was medication. I am not on prednisone, soma and Lortab. That I have taken steps that means I can do less but will live longer, and healthier.

When I went off the medications it was not by choice. I was sure I was going to be back right on them as soon as I found a doctor that would listen. Between the weight gain and how sedentary my life had become, I knew I needed to make changes. I just didn’t want to think about it too closely.I dealt with it slowly and piece by piece.

Sometimes just realizing that you are being unreasonably hard on yourself, that allows you to relax a little. I am going to try and focus more on what I have done each day than what I have not done. I am going to try and remember that being off those medications is a good thing and that it just makes self care even more important.

I have realized that I have depended on certain activities to relieve stress. The problem is they are not relieving stress. It took me a while to notice this. It is time to switch up some of my self care things.  Summer is coming. Well really in Florida Summer never leaves but the kid is out of school in a week.  There is going to be more variety. More embracing what and who we are. There is just going to be more.

I know I have said this in the past. I have done it in the past. Each time I am a step closer to where I want to be. I just have to remember that and not get frustrated that it feels like I am back where I started. I am not. I know that I am not when I really stop and look back.  Its a process. Sometimes its the process that is frustrating. Sometimes just acknowledging that makes it a difference. Gives us a fresh perspective and renewed motivation.

Tomorrow I turn a year older. Here is to understanding the process and embracing it all, the good  and the bad!

Never a normal doctors appointment

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Friday mornings are my roughest. I am so ready for the sleeping in on Saturday morning that sometimes happens. If it doesn’t happen the staying in bed a little longer happens. Most of the time.  Having a doctors appointment on a friday morning seemed like a good idea. I am not sure why. I know how rough I am. I got the kid out the door and to school on time. I headed to the doctors office right away because traffic is still horrible here. The tourist and snowbirds are slowly going back home…..slowly.

This was a review bloodwork and make sure my medications were all still okay. I was seeing the nurse practitioner because of a schedule conflict the doctor had. Because I can never just be a cut and dry case of ANYTHING…… my magnesium and potassium are still fluctuating still on the low side….and my thyroid is off…also on the low side…but the hashimotos study and the antibody study came back completely normal. This makes perfect sense to me, because I am used to this kind of thing. The Doctors were a bit perplexed. As I have a heart condition as well and am on medication for that, she is a bit hesitant to start thyroid medication. My heart condition is fairly well controlled with medication, however that does not mean we should take risks. If we do start medication it will be with an event monitor to make sure that I don’t have any SVT episodes(read my heart goes wacko, arrhythmia). For now we are doing thyroid level checks every three months and checking the antibodies every six months.

She was incredibly pleased with my progress on loosing weight and walking. Both of these will in the long run also help my thyroid along with my heart and other things. The progress is also why she was hesitant to start thyroid medications, afraid it will affect my heart and set me back walking and weight loss wise. We discussed diet and how juicing is helping. She was a little bothered that I only drink juice in the morning for breakfast and water. I am not a breakfast person. Unless breakfast is at ten or eleven am. She said she would like to see some grains introduced into my breakfast but since I was getting such packed nutrition from the juice she was not going to push it.  I have cut back my soda and coffee and that too will only continue to help. I told her there is one thing I do , do……the week before my period. I go with what I want, not necessarily what is healthy. We also discussed the once a week frozen yogurt. She said she wasn’t concerned because it was frozen yogurt first of all and the amount of fresh fruit I add was enough she felt the hot fudge and carob chips were an okay splurge. 

I was on prednisone for several years. During that time I had issues with skin scarring and keeping my skin moisturized enough. When I went off it , it slowly got better and went away. It is back. However she was not concerned that it was a new thing. It can take several years for skin to return to normal and will take intensive moisturizing treatments. Oh more fun. I am so horrible at remembering to do this, plus my OCD hates the texture of most of the lotion and creams.

While my magnesium and potassium oh and vitamin D levels are just slightly below level, we are still gonna keep an eye on those too. Its a relief to know that I am not taking too much because the levels I take are fairly high. It concerns me. However my body just doesn’t seem to like to hold on to those things.  Malabsorption is so tricky. Sometimes I absorb things great. Other times not so great. There is constant adjustments needed.

We then discussed the upcoming trip in August to Epcot and camping. She doesn’t see it being a problem for a low dose muscle relaxer for a week. It is one less thing for me to worry about. I can work on progress with distance in my walking. It will help with endurance. Camping and keeping up to an excited nine year old will be hard. This is just a little edge off at night to keep me going for four days.

After such a good doctor visit and leaving so pumped. I treated myself to Starbucks. Just a single shot espresso. I add sugar to it and it reminds me of Cuban coffee I used to get with my Dad. Its a nice warm fuzzy memory to set the rest of my day with. Not to mention the boost of energy and possibly being productive with housework today!