Tag Archives: Self care

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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Connecting with Compassion to who I am #1000speak

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Everybody dreams what their life will be like when they are older. Especially when you are a teenager and life is so hard and no one even remotely understands you. Life will be so much better when you are an adult and in charge.I would get married. We would have at least two kids but probably more and of course we would have a boy first and then a girl. We would have this nice house which I would always be able to keep clean. We would have success after success at our careers. We would have money for vacations and would be well-traveled. This picture of how it will be drives you on and on and on. Until it doesn’t. Until that is not how your life is going at all, not even remotely. Your daydreams didn’t account for reality. They didn’t account for infertility, job loss, deaths of loved ones, and on and on the list could go. That’s the problem I struggled with for a while, the picture of my life in my head and how it really has gone.

Many days and nights spent berating myself for messing it up so badly. I obviously wasn’t trying hard enough, doing enough, being enough. I had to get my act together. It was past time to grow up and be the adult I dreamed I would be. In time, I added to that. It was time to be the wife I dreamed I would be. It was time to be the mother I dreamed I would be. It was time I had the career I wanted. I was so good at criticizing myself. Really , I still am.

Every month for a week at a time I would beat myself up. It was so easy to get pregnant we had been told. It only takes one time. Every month I struggled with the feelings of not being enough. Not being woman enough to do a simple thing like get pregnant. Made worse only by doctors who said “ah your young it will happen. There is nothing wrong.” Nothing wrong at all with a nineteen year old, a twenty year old, a twenty-one year old trying month after month to get pregnant and failing. Month after month of seeing my dreams flushed down the toilet, literally. Finally when a doctor did believe, I wasn’t relieved. I didn’t feel vindicated. I felt broken. The day came and the test was positive, for a short while everything was back in place. Then it was gone. I was back to flushing my dreams down the toilet. That picture in my head said I should be pregnant with baby number two by now. That picture in my head was starting to shake and tremble. If I was really honest that picture had broken years ago but I refused to see it.

The test was positive. I took a million more. I didn’t really believe it. I was sure something was going to happen. Even as I was in labor, something would happen. My dreams can’t be coming true. I will mess this up some how. We were leaving the hospital with a baby. WITH. A. BABY. For a few days I believed and then, you have eighteen years to mess this up every day. For eighteen months I worried about every single detail. No, I didn’t worry, I obsessed. I question every decision at least ten times. My house could never be clean enough, I could never be doing enough for this precious life. Obviously the only answer was to try for another baby. You know so I could mess it up twice. I mean so I could get at least one right. Maybe. Two months and nothing. So much for the second time being so much easier. Then the phone call. My husband lost his job. Laid off. Back to the doctor I went, for birth control.

At this point you maybe wondering if I had the same issues around getting married. The simple answer is no. The process was not simple at all. Three weeks after we met my husband was in a car accident. He had been taken by Helicopter out to a trauma hospital. Scary words were said, like life support, coma, brain injury. To see someone like that is not easy. To see someone like that and suddenly know they can’t die your suppose to marry this person.The only second guessing I have is , if he hadn’t been in that accident would I have ever known? Would I have messed that up and walked away. For a long time that answer was probably. Probably I would have walked away from the greatest thing in my life. I am sure I would have messed it up.

One day it was clear. I needed help. Therapy started quickly, before I changed my mind. Medication happened. Medication changes and more therapy. It took me years to be comfortable with self-analysis. This was just simply not done. You simply didn’t do self- analysis with someone else. This is what you did in bed late at night when no one was around. Most certainly you never told anyone, let alone discussed it. Slowly progress was made. Until it all fell apart. It like literally fell apart, got laid off then my car blew up and then I wrecked my “new” car. I tried to pick it back up and worked at a new job for three months and then I realized. No my family is more important to me then this. This work and have nothing left, using medications that allowed me to work but ultimately would shorten my life considerably. My family deserved more than this.

It really wasn’t though, it just seemed like it. Instead it was all falling into place. All that therapy was not for nothing. I have been slowly coming to accept where I am. The first thing I had to do was tear up and burn that picture in my head of how life was supposed to be. Chronic illness had dictated long ago just how clean I could get and keep my house. It dictated a lot of things for a while. Second thing was to tell this chronic illness crap it wasn’t the boss of me, well not all the time. I started writing as a form of self-analysis and as something that maybe eventually one day it would help someone else. Even if it only helped me it was worth it.

Four years later, trying to look back to what really ultimately helped me make the change. The change that took me from a person who had to please everyone else even if it didn’t please her to the one who likes to please others but knows she has to please herself as well. I can’t tell you how much watching tv show after tv show actually helped because I stayed true to what truly interested me. How many Doctor Who episodes I watched at just the right time. The universe was getting its message to me.

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I can’t tell you how much these words stuck with me long after the episode was over. I can’t tell you how much I really just sat and thought about how I feel about these words. There were quite a few others I am sure that I heard but didn’t really hear. I know now that it wasn’t the right time for me to hear them. Somewhere along the way I found myself back to being an avid reader. Somehow I was finding myself. Four years of this, so don’t think it was just one day. I can’t tell you where I was in the journey when I saw this next quote. I just know it stuck with me.

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Huh, yeah. THAT. For a while I just related to this post. I would see it and it would always get a “like”. Then maybe I shared it. The more it sat in my brain just percolating the more I thought about it. Then came the final point, the epiphany if you will. What if I just let go of that picture? What if instead of burning it or ripping it in anger of how it was “suppose” to be. I just let it go. Slowly, I began to actually enjoy my life. I began to start analyzing what I do have about a year ago.

I can’t tell you that voice that always says I am not enough, not doing enough is gone. It is not. It is not always easily squelched under foot either. This is where Buddhism has really come into play for me. Reading some of the Buddhist texts and books available through the Unitarian Universalist Library in our Church I found this quote.  This quote quite often becomes my mantra during meditation.

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I can’t tell you how many times that voice tries to rise and I can only answer Self compassion repeated over and over. I am not quite there yet. I am not quite to who I am yet. I am getting closer and stronger in it every day though.I am trying every day to connect with who I am instead of who I thought I would be.  I hope you are too. I hope you are showing yourself compassion because that voice is wrong. It is dead wrong. You are enough.

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Please do CONNECT with Compassion and Link up to 1000 Voices of Compassion Speak

Ten Things of Thankful the non-jumbled version #84

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I was so busy with Squish and #1000speak and collapsing into an exhausted pile of goo at the end of the day I have not had time to even think about writing my thankful’s daily.In it’s own special way that is also a thankful.  I have thought about them through the week. Must remember to include this.Must include that…But never got around to actually doing it.  So this week they are NOT in date order I know that will throws some of you for a loop.

Number one on my list this week. I mean it is right up there as the most thankful thing.

The science fair project is completely done and turned in!

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Number two is the ability to see the beauty around me even when I don’t feel all that great. The first one I saw while on my walk with Squish. The second I saw out of the corner of my eye and had time to turn around and get a picture. Yes, I am that lady on the side of the road taking pictures with my phone.

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Number three is very special. The first time I took this path for a walk I saw manatees in the Intercoastal.  They have been hit or miss but it has been weeks and I was just thinking that maybe they had moved on when these two popped up. See those two little smooshes in the water- those are Manatee noses. It was like they heard my wondering about where in the heck they had gotten to. Number four is I am so thankful that we live in an area where wildlife is so abundant.

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Number five is playground time with Snickerdoodle. Seeing how kind and compassionate my daughter is with snickerdoodle just satisfies me in so many ways. Not to mention it is fun sometimes to go back to dealing with a two year old over a nine year old!

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Number six is new things. This was squish with first experience being put in the grass. Bare toes and all. While at nine my daughter still has some firsts, they are not nearly as fun as those in the first year.
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Number seven and number eight are math workbooks. First off that my stop at Goodwill paid off and they had not one but TWO math work books for fourth grade. We held her back in second but she should be in fourth grade this year and she is a bit below level in Math so I am hoping the extra work will help give her a boost. Number eight is that even though she eye rolled. She dug right into them right away.

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Number nine-seeing a fellow friends studio and planning Imbolic. We also splurged and went next door and had the most enchanting Malacala Chai tea complete with tea bread to nibble on.

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Number ten. It has been a few weeks I think since I mentioned it, how Thankful I am for my husband and all the long hard hours working two jobs that he puts in. I really don’t know how he has continued to work seventy hour weeks for longer than a month now.

And as a bonus the book Eat Pray Love. I recently started reading it and I just love it and am so entralled in it. It has been a while since I was truly thirsty to devour a book.

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.

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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.

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 idea of pain relief

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Its been… um.. let me think… Seven years? I think. It all runs together. I no longer remember not being chronically sick or dealing with Chronic pain.

Once upon a time I was taking prescription level strength pain medications. Now I get over the counter pain relief medications.

Now I laugh when I see them call them pain relief.

Oh honey aren’t you cute. Its more of a pain dampener. Its like after the mind numbing silence someone turns on static and you think well this is nice. But then it fades and the static gets quieter and we are back. Sometimes it doesn’t even do that.

I know I have an amazing ability to push it aside most of the time. For me, most of the time it is mind over matter. Meditation has gone a long long long way to help me here. If I am in motion I am less likely to notice it. It is so much easier for me to stay in motion once I start. To just go from one thing to the next.If I let myself rest , I feel it. I don’t want to start again. This is part of the reason mornings are so difficult. Its that initial get in motion activity that is so hard to do.

I have too many sensory issues to use much in the way of creams or gels during the day. As hard as it is to believe the sensation that the cream or gel creates is more distracting to me than the actual pain.  Same with pain patches and what not. Sure I could go through the hoops and motions and get back on Lortab or something similar. The question remains though, at what cost? They were making my health deteriorate faster and with a family history of drug dependence and abuse, I am more comfortable not being on them.

In the end this means I spend a lot of time at the end of the day getting out of pain. I take Tumeric and ginger during the day for the pain and it does help. At night I often flop between aspirin and Tylenol, ice packs, epsom salt baths and sometimes even massage.

Everyone has to do what is right for them when it comes to pain management.  For awhile , for me, it was prescription medications. For now , for me, this is how I manage. It will change again. I know it will. That is one thing this journey has taught me. Pain management is all about change because our body has this wonderful way of adapting to  pain. We become tolerant of the level of pain. We become tolerant to the type of pain relief we are using.  Had anyone told me that I would tolerate a pain level of five as my normal pain level on any given day when I first started. I would have laughed until I cried.  Had they told anyone that when I rate my pain a three I consider it a really really good day. ……  The pain can only be pushed aside so much before it demands to be felt. I probably would have told them to keep the drugs coming, I don’t want to feel 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.

 

Nature’s Gift

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Today I turned a year older. I didn’t really want presents. I have no room for anything and really don’t need anything. Instead I wanted to go on a hike at a new place with friends. I had seen pictures of a place that was a bit of a drive but still near by that intrigued me. Six Mile Cypress Slough Preserve. I just can’t even begin to tell you how perfect it was.

There are quotes on plaques at certain spots along this boardwalked path. Between the sighs and sounds of the preserve, and the quotes. Nature was talking to me. Letting me know that I am on the right path and to keep it up. It was nourishing in a way I didn’t even realize I needed.

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“You learn that if you sit down in the woods and wait something happens” Henry David Thoreau.

The soft sunlight, the smell of cypress and the chatter of birds in the trees. It was all just so perfect.

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“Falling in love with the Earth is one of lives great adventures. ” Steve Van Matre

Its true. It was like falling in love with the Earth all over again. Every step. Every new discovery. Every new enjoyment from the kids.It doesn’t matter that we have lizards and squirrels. These were here now! We saw them! It was right there! Watching their delight was truly a gift. Using our imaginations and just taking our time walking. We even saw a tree looking at us!

 

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It was truly an enjoyable walk. It was exactly what I wanted. It was gorgeous weather. The humidity and barometric pressure were steady, important tidbits when dealing with arthritis.  We lost track of time watching the turtle weave around the pond. We delighted in watching them eat the algae.  It was a secure enough trail that we felt confident enough to let the kids wander ahead of us.  Letting them explore and make their own discoveries.

 

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Its camouflaged  very well but I promise you there is an alligator in this picture. We watched him rather lazily swimming around for a bit.

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I can’t even imagine what it was like here even just fifty years ago. These trees are relatively small for cypress. There were some bigger ones. I just love the cypress knees sticking up.

 

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I think one of my favorite things was how many Yellow crown night heron’s we saw. It was like once we saw one we kept seeing them. We even got to watch one eating a fish.

 

It was the perfect escape and the perfect way to turn a year older.

 

We followed this with a visit to Tropical Smoothie Cafe. The kids were super excited for smoothies.  It was all very delicious and the food came fast enough that the kids didn’t get too delirious and were so well behaved. Enough so that they even got cookies.

 

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!