Monthly Archives: July 2014

The Things we did…..

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Saturday July 26th

 There was much rejoicing when our friend arrived. We thought we had a library class. Apparently Mommy did not look very closely…it was capped at age seven. We went to Target instead.  We were then off to Snickerdoodles brother’s baby shower. HA thats a mouth full huh. Anyway it was a good day.

Sunday July 27th

 We went to church. We had an ice cream social.  It was really great.

We explored some of the mangrove areas and then it was off to the beach.

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We always find different things when we go to the beach.

We did not expect to find a condom

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It blends right in with the shell and sand dollar doesn’t it.

Monday July 28th

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Monday we got our art on. Ringling Museum is always a fun adventure!

We went back to the beach. A different beach this time. We did not stay long as there were some strong rip currents.

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Tuesday July 29th

 We had a little exploring and we saw some of the local historical houses

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Then we went to the pier.

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We had lunch with my other friend.

Then this happened because we needed some girl time….that did not include small ears. Some talking some beer….some pretending to read so the kid won’t ask me to watch every two seconds.Sometimes you just need a break.

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Wednesday July 30th

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We tried one last time to see some Alligators. They must have known we were looking. Not a single one was to be found. Its not like St. Augustine doesn’t have alligators but still.

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We did have a lovely picnic before the kid had a library class.

Thursday July 31st

 Lots of cleaning happened.  We were done house sitting. We packed everything up.  My friend left to go back home. We have one night at our house and we are off to Epcot thus the early post.

I WON”T BE HERE.  I thought camping the first few days in August with a nine year old would be a great idea. SO off we go!

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The eighth week of summer

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Here is what we said we were going to do Sunday July 20th : Church and hang out with a friend and her kid.

What we did was, skip church and go to the beach with friend and her kid.

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I was on a mission to find sand dollars. The last twenty minutes of our three hours at the beach, I found the Mother load. I am looking at it like this, I know where they are now! When we go back, because we will go back, they are mine alllllll mine. Hopefully next time we will find some dead ones we can keep. These were all alive.  Oh and guess what the kid’s research subject is going to be this week! We will finish that off with a trip to the beach on Saturday and find more.

Here is what we said we would do Monday: Cleaning job. What we actually did was , cleaning job! YAY they match!

There was also Espresso

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Lots of espresso because there was also storms moving in. We cleaned our house as well. We didn’t get everything done because  we had to go pick up Daddy from work and take him to his second job. We went to Starbucks in between so we could all survive!  The kid got a lot of math done and she got her hour of reading in. We also stopped to visit the new calf down the street from us.

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Here is what we said we would do Tuesday July 22nd:  A World of Drums Class

Here is what we actually did Tuesday :

We started the morning off with the kid doing her math and reading. I did laundry and dishes…oh yay!

We did go to the drumming class.

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Wednesday here is what we said we would do:

Here is what we did:

Thursday here is what we said we would do: Math tutoring

Here is what we did Thursday:

We are stepping back from the intense math tutoring sessions for a week possibly two and instead she is doing thirty minutes of math games online. We have been using CoolMath and Mathisfun. She is then watching thirty minutes of School House rocks math multiplication.  This is each day. Today she did an hour of math memory games then followed by a mix of School House Rocks Math all skills. She also did some math worksheets from her workbook from last year. We then went and saw smokey the bear and got to see lots of cool things and learn about how they fight fires.

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Friday we cleaned our house and packed for house sitting. We had one last play date with the girls before they left on vacation.

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Saturday we came to the house we are house sitting. The kid did her math and reading while I did the extra cleaning I said I would do.

All in all a pretty good week.

Let the insanity begin :July 27th – August 2nd

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So the next seven days is absolutely insane. This is what we have been building up to all summer. Think of this as our summer climax! No no get your mind out of the gutter….climax as in the apex  of our summer story. This week my friend from St. Augustine will be here. Two disabled women can surely keep up with a nine year old right? shhhhh

Sunday July 27th

We are going to church this week. Especially because after the service there is an ice cream sundae party!!!

Mote Marine Aquarium

Sunset at Siesta Beach

Monday July 28th

Ringling museum. This is an art museum which we have not been to for a while but is free on Mondays. Its very large and will take quite a bit out of us so we are planning on a quiet evening at home after this. Possibly go to the beach around sunset. Its so much nicer either first thing in the morning or at the end of the day.

Tuesday July 29th

Venice Rookery : not sure what will be there. It has been interesting to see the nesting patterns of the different birds.

Lunch with a friend of mine so I can introduce my other friend to her.

 Mighty Manatees at Selby library. This is a library about twenty miles away and it is gorgeous so we will probably take some time to explore the library while the kid is in the manatee class.

We will then go to the splash park which also has a nice trail to walk along the water.

Wednesday July 30th

Stroll downtown Main Street. It has such a large and diverse set of shops. It will be fun to see it through someone elses eyes plus…SHOPPING.

We will walk over to the art center the kid had her pottery class at. There is a show room and its just a nice place in general.

Sea Turtles class at Library.

Short trail at Oscar Schere park towards the late afternoon early evening to avoid the extreme heat.

Thursday July 31st

Spanish Point Indian Midden. This will just be a quick visit as early as possible.

Help friend Pack up.

Clean up the house we have been house sitting.

Friday August 1s

My baby turns nine today. Nine years! How the heck did that happen?

We will be packing up our own car and heading to Fort Wilderness.

Setting up our tent and getting situated.

Saturday August 2nd

EPCOT.

We will make sure to do it all but the kid really really really wants to make sure we see Hello Kitty.

Frustrating brain issues

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I woke up this morning and knew I needed to write. I knew I had things to get out. I tried several times. Every-time my brain just went blank.  Sometimes it helps me if I just dictate it into the computer. My brain again said…uuuuhhhhhh uuummmmmm uuuuuhhhhh..

Sometimes I can get around writers block by reading. I can get lost in my book and all of a sudden it flows and I can start writing. I set the kid down with a book to read as well. She loves reading but is very restless about it so her reading time is much longer than the normal recommended time length. I have to remind her to focus, to stop flip flopping all over the place. She does better reading out  loud to stuffed animals or whatever pet she can wrangle to her. This is all good and well. I am good with this pattern we have. However, I am one who needs less distractions while reading. I can lay down in bed and read for hours. Reading was not going to work today.

I tried to outline what was in my head. The only problem was I was all over the place. Flares, medications, coping techniques summer schooling structure for the kid. I couldn’t get enough of any one thing out of my head to be a blog post. Basically at this point picture me at a desk with a trash can overflowing with tossed off balls of paper. Me tearing them off in frustration.

Ah the boring monotony of laundry. I could do that and let my brain wonder. Washer to dryer, new stuff in washer. GASP. fold some of the laundry. Only problem…my brain did not want to wonder. I even did dishes from last nights dinner and this mornings breakfast. SHOCKING I know. Well its shocking if you know me.

I am hoping my last ditch effort. Aimlessly driving will be the release. However we don’t need to go anywhere for an hour longer and the kid needs to finish reading. Bare with me. I will have more than just our summer compare and contrast weeks posts.

The week of rain….otherwise- Week Seven

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It didn’t rain all week. It just seemed like it.  When recovering from a flare it does not take much to make you miserable again. This week there was two waterspouts within ten miles of us.  People are not always concerned by them. They are typically harmless. Unless you have arthritis.  So here is what we did get done. I am pretty pleased with it over all. I am glad I am doing this as it really helps me to see just how much we are doing. Its a good reminder because there are so many times I feel like all I say to her is not today.

 Sunday July 13th

Sunday was a slow easy going day. We also decided to start reading out loud at night again.  We shall see how long this lasts.  We have a great book to dive into.

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Monday July 14th

Monday we took the car in for an inspection, oil change and just general maintenance. I had not really planned on being without a car most of the day. We got the cleaning job done and the kid got her reading in. She also looked up vocabulary words from chapter one of 20,000 leagues in the dictionary. We went to a library presentation.  It was interesting. They were marionettes. We learned some marionette theater lore. The play presented was the original Jack and the Bean stalk. We also learned that story has been a play long enough that William Shakespeare could have watched it as a child too.

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Tuesday July 15th

Tuesday did not start off as planned. Summer in Florida means afternoon storms. I was not prepared for one in the morning. We finally reached our limit in the house. I needed to be up and moving around anyway. I was looking for an alternative to our hike since we got rained out. I found a park that looked interesting and looked to be outside the storm area. This of course meant that we drove right into another storm that had not been on the Radar when I first looked. However, I think the storm added to the magic of this park. It was a fairly light drizzle off and on. It was a really small maybe five minute loop walk. Super small for what we normally do. The magic here though. Man the sunlight, the tree climbing, it was nothing short of delightful. We also maybe absorbed just a tiny bit of knowledge about Indian Middens and about coastal hammocks. This is also one of the days of water spouts.

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We got to the Library about an hour early. It was really horrible to have to look at books. That hour really flew by!

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The class was very small but the kids seemed to enjoy it. The fact that the presenters were dressed up as pirates helped a bit. At the end they got to make edible pirate faces, to remind us not to end up like the pirates and have scurvy. Hey I will take any message that helps them eat healthy. Moms have to say eat your veggies but maybe if someone else says it…….

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The kid may have been a bit freaked by some of the information. She was really into having broccoli for a snack later. She then made herself a spinach brocoli and strawberry salad. Really I am not complaining about it. She ate quite well today without much effort on my part.

Wednesday July 16th

This library class was beyond awesome. The presenter had a great way of engaging kids while also entertaining parents.

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The kid even got picked to participate! She was the potassium iodine naturally. He went on to list what Potassium iodine is like….a party pooper.  Then he told her sometimes she can be clumpy but she can’t go into the HOOH (peroxide) like that so they had to unclump her.  It truly was entertaining.  This also happened to be a waterspout day which when I heard I was like… OOOOOHHHHHH thats why I haven’t been able to do anything all morning!

Thursday July 17th

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Thursday started off with our normal stuff.  Math tutor lesson, espresso and reading. We made another breakthrough and have a better understanding now of what needs to be done to help her in math. She can’t visualize the numbers in her head. We do a lot of guided meditation so I plan on having her envision a sheet of paper and adding numbers. More specifically helping with the place value. She knows them  but she can’t hold them in the right order in her head. This week it was me who walked away with homework.  We already know she falls into the ADD category. Right brain thinking. So during the day we have right brained math games to do.

She worked really hard and we got a lot accomplished so we went off to the splash park for an hour.

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 Friday July 18th

So we started Friday with this.

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It was pretty awesome. We had fun. It was even fun when I tried to dive down for a sand dollar and a wave came and tossed me over. I came up laughing. My back did not find this so amusing. It looks like more ice packs are in store. It was completely and totally worth it though.  So the laundry didn’t get sorted or the drawers organized.  There is always tomorrow to try again with that.

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We also treated ourselves to frozen yogurt for afternoon snack. Chocolate and hot fudge made me a bit less miserable about my back hurting.

Then we went to Target.

Hello my pretties. I have missed you.

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Saturday July 19th

So off and running first thing this morning. Well it was a reasonable time. Nine am is almost acceptable to be leaving the house. We were off to a fossil class. One that I almost forgot about. Glad I got that reminder email at eight am.

We swung by and picked up the kids best friend.

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We had lunch at our friends house and the kids all played. We left and came home. Got our swim suits on and we went to the beach. I only meant to stay for an hour. Turns out, my body prefers the saltwater. I am pretty sure I was always meant to be a mermaid. My joints are so happy right now… Two hours in the water…. yeah we may have gotten a tad burnt but it felt so good and the kid had so much fun. It was great just mommy and her time. I even left my phone at home. So no pictures which is sad but it was soooo nice at the same time.

Until next week…..

Oh the plans we have- June 20th-26th

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It suddenly dawned on me at seven thirty at night on Thursday night I had not even looked at the upcoming scheduled events.  I told you I was good at denial. Then I remembered this was rest week before the the insanity breaks loose. phew!  Its really good insanity but its insanity none-the-less.  So this is short and sweet:

Sunday July 20

Church….hang with a friend and her kid for a bit.

Monday July 21

 Cleaning job

Tuesday July 22

  A World of Drums Class

Wednesday July 23

 John Storm will fascinate you with a live python, turles and other exotic reptiles from around the world
We have seen it before but hey live animals!

Thursday July 24

Math tutor lesson

Friday July 25

 After a story, Barbara Gail of Rhythm Inlet will present an educational program that will mix music and yoga.

Pack bags for house sitting job.

Saturday July 26

Show up at house sitting job, get situated.

This is when the insanity begins but I love it. My friend from St. Augustine is coming for a visit.  Insert loud squealing and virtual jumping up and down because arthritis is mean. (this is pre-arranged with house sitting client)

 Library class: Young scientist:Watch amazing absorbing colors, experiment with magnets, build things, and more science fun
friend and I can go over to park for a walk and a little explore.

Relax at house rest of day

Light picnic dinner at the beach for sunset

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.

LET ME OUT… Aka Week Six of Summer Break

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

Sunday July Six.

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

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

Monday July Seven

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

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Tuesday July eight

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

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

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

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

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

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

Wednesday July nine

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

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

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

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

Thursday July ten

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

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

THEN we had family naptime.

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

Friday July eleven

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

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

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

Saturday July Twelve

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

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

Week Seven of Summer Vacation : July 13-19

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I almost forgot.  I am living in a state of denial at this point. I try not to look at what is planned until the night before.  The next three weeks are scary busy.

Cue horror music

Family vacation is coming

I want to but at the same time… I don’t want to.

So until then here is what has been scheduled.

……….

Sunday July 13

Church

Monday July 14

Cleaning Job

Picnic lunch

Bits N’ Pieces Puppet Theater will perform the story of Hanuman, a monkey with incredible powers, using puppets from Indonesia. Following the show, everyone will create marionette puppets using paper and straws.

Tuesday July 15th

I will get a slight break because I will add a kid, helping out a friend. It seems like that would be more work. It will be a welcome distraction. They can entertain each other and probably will entertain me too.

In the morning, since friend is coming over early, we will head back to Myakka River State Park.  This time we will pack a lunch and probably spend some time at the playground too.  Then off to a library class on Nutrition. Scurvy and the importance of fruits and vegetables. Where do we get Vitamins A,C, and K? Make your own healthy snack with an english muffin, cream cheese, and fruit! Yum!

Wednesday July 16th

Mad Scientist class at the library!
 A dynamic program full of exciting experiments and interactive demonstrations guaranteed to spark an interest in science.

Thursday July 17

Math Tutoring lesson

Friday July 18

Determined to get to the beach

Saturday July 19

Puppet show.

 Endangered animals tell their stories with music and puppets – and Katie! of Make believe Theater.
Send Coffee, Chocolate and any kind of alcohol.

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.