Category Archives: Parenting in pain

Reconnecting my soul

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We are often out hiking or taking nature walks so I didn’t even realize it was missing. The part of my soul that nature just seems to click back in place from all the crazy of life. The problem had not been we were not out hiking or walking, the problem had become it was all too familiar. I needed somewhere new to explore. Once I started thinking about it , I knew that was it. I knew I needed to go some where new to explore and I needed to get dirty. Where oh where could I find that in Florida? The swamp. Oh that sounds perfect. We made plans with a friend to combined families and go to Corkscrew swamp. The day we were to go I decided to look up Corkscrew and see what to expect. What I didn’t expect to find was a twelve dollar per person fee. It would cost us thirty dollars to go hiking? Pass. We will save that for a special occasion hike. So the night before we were suppose to go I was scrambling to look up a place to go. I looked at a bunch of different parks but nothing was striking me. I was actually really looking forward to swamp stuff. A boardwalk through the swamp was just what I needed, or so I thought.

I found Green swamp in Lakeland. It is spread across five county parks. I narrowed it down to Colt Creek Preserve.

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Yes, my daughter chose to wear white to the swamp. I let her because , Bleach. We found great spots to explore. Places where wild boar had dug up, plants and flowers to inspect, and birds so many birds to listen to. It was even a bit wet.

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It was pretty near perfect. Within thirty minutes of the hike starting I felt my soul reconnect, that click that being out in nature does for me. Grounding whatever you call it , I felt it.

We even walked through trail that was past our ankles deep in water. We even scared a turtle out of hiding tromping through that trail. It was not what I had thought. It was a bit more water than I had thought to go through, but it was perfect in so many ways.

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We even came across some wild blackberries growing and some were ripe enough for the girls to eat. We left plenty for the animals though.

We found all kinds of places to explore. I had plenty of water with me and I had taken Ultracur that morning and had enough with me to get me through the rest of the day as well as a nutritious and balanced picnic lunch packed. Plenty of carb replacement and protein along with veggies and fruit. We did not set a certain pace and took breaks as frequently as we needed to.

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The kids did great. We came to a pavilion not too long after this part of the trail. The girls were so busy playing in the field when they were not complaining of being hungry. My friend and I decided to leave the girls there with my husband and go get the van, where we left our lunches. They walked a bit over three miles , not too bad for four girls under ten years old.

When I wanted a swamp hike, I did not envision stomping through water that went almost to my knees.

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In case you think I was kidding, that really was the water line. I didn’t stop while we were stomping through it because I was in anxiety overdrive. If I had been alone or even just with my husband I would have probably turned back. I probably would not have pushed through. I have a lot of anxiety about that much water and not being able to see the bottom. There are snakes and snapping turtles and alligators just so many things my brain could come up with. I was glad I had been practicing deep breathing because it really helped. Whatever was left out of alignment clicked in place after making it through that. The exhilaration of overcoming it really was something I needed, had you told me that ahead of time I would have told you you were crazy.

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I definitely felt the walk the next two days but it was exactly what I needed. It was much easier to give myself permission to rest and recover. I had squelched any fears of not being an involved enough mother. I had stomped on any feelings of uselessness. Truthfully I think my daughter was just as tired as I was afterwards. I definitely felt connected to the Earth and the fact that Earth Day was just a few days away made it seem even better.

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Ebb and flow of parenting with chronic illness

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

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

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

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

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

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

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

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

I am still working on it.

The summer climax….family vacation

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Family Vacation-It is grueling in a lot of ways. It is also worth it in a lot of ways too.

We booked our vacation in February. After receiving our income tax return. Thank you Government! It is the only way we can budget in a vacation. I was really really surprised how reasonable a Disney vacation package is.

I was determined to maintain reading time even with being on vacation. The car drive was a good place to enforce this. It was more like me saying every ten minutes. READ.. Are you reading? READ!  She had her book out the whole way there, a two hour car trip.

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We got to Fort Wilderness campsites. The check in time was suppose to be one pm or later. We got in ten minutes early. BONUS! We got campsite 2006. It would have been super awesome if it was 2005 since that was the year she was born , we were here to celebrate her birthday after all. I was super stiff from the car drive so I did some stretching while the husband went all Master Tent Setter-uper. It took about twenty minutes before the kid was ready for the pool.  We went ahead to the pool. Hubby was super about setting up the tent and inflating the air mattresses.

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Let the standing in line begin! An hour and half and we are done-for now.  A small trip to Wal-Mart. No vacation is complete without a trip to Wal-Mart.  We saw the good side of Orlando. We saw the bad side of Orlando. Thank you G.P.S. for taking us on the longest route possible.

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Each night Fort Wilderness has campfire events, Chip and Dale were there. The first night it was charades. It is amazing how much they can express without saying a word.

As a native Floridian you would think Epcot would be old news. It actually has changed a bit. It was a nice mix of familiar and new stuff.

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Of course, there is also the difference of seeing it through your child’s eyes.  Remembering how you felt and seeing it expressed on their face.  It really is priceless.  That’s what you hold on to when the kid is in mid temper tantrum. Actually she was really really well behaved.

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Some of the things have changed. Figment is not the same.  It takes a bit to remember that change happens. The message is still just as fantastic.

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Kids absorb so much more than we realize.  There were some really inspiring quotes around too. Which was great  because what else are you going to do in line? Think deep thoughts of course!

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NOT! It’s more like how long until alcohol!

There were primarily two types of parents at Epcot. Those who had alcohol and those who wished they had alcohol.

We did not indulge this trip. It was really tempting in Mexico to stop for some Tequila!

No really after ten hours at Epcot I can see how kids would have temper tantrums. I can see how parents could have temper tantrums. I am  physically only able to handle one day, even that was hard. I can’t even imagine going to parks back to back.

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Sunday we chilled. We went to the pool. We went to the arcade.  There were a few temper tantrums. It really should be expected. If you are tired, your kid is tired too.  It also helps to remember to eat frequently.  That is primarily where we ran into trouble. You really do loose complete track of time and not realize its been so long.

There was Mommy and daughter time. Even if she did say…..” look Mommy I am floating like you only better!”

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There was Daddy and daughter time.

There was bike riding, not by me though. My back won’t tolerate that. They rode their bikes, I walked to the bus stop and took the bus!

I also took advantage of the hot tub at every available chance.

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The campfire events were the perfect end to the day. Okay the S’mores might have been part of the reason for that. They had a movie as well but, realistically we were beat by seven pm. We headed back to camp by eight thirty each night. It was hot. I am not gonna lie. It was not miserable hot though. We had electricity hook up so we had a fan, which really did help.

It really was exactly what needed as a family.

Monday we packed up and drove home.

Tired, slightly burnt(despite copious amounts of sunblock) and ready for home.

I did not do much of anything once we got home.

Other than start planing next years vacation to Animal Kingdom!

So what did I learn?

1. Medicate medicate medicate.

Set your alarm. You may even need multiple alarms to actually take the medications! Don’t wait to be in pain! It slowed me down to wait for pain to ease to keep up with the kid.  It was easier to put aside my discomfort to make sure she had a great vacation by telling myself its temporary and rest is coming. Make up a mantra to help keep you motivated.

2. Pace yourself and go with the flow.

Some of our past vacations I have been completely stressed out.  It is better to have an idea of how the day will go but not be very rigid.

3. Speak up for yourself.

I mostly use over the counter medications. However I did discuss this trip with my Doctor. He was willing to prescribe muscle relaxers and pain control meds for the few days we would be gone.  I also was more tolerant of myself using some of my vices, Chocolate and Caffeine. I used Mountain Dew and a snickers bar to finish the trip home.  It was a small boost but it helped.

4. Plan ahead

So this may seem a lot like training for a marathon. YOU are training for a marathon! I did slightly more walking the days prior to going. I also tried to rest as much as possible as well.  It doesn’t always work but being mindful of needing to train and rest certainly helped.

5. Plan for REST!

I am really glad this year we added an extra day to hang around the campsite. It really helped me feel less taxed from our vacation.

I am still extremely tired and easily exhausted. I am still in higher amounts of pain. I expected it though. Plan for plenty of rest after the vacation as well.

Why must we build them up so high?

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If you have followed us all summer you know the kid has been going to numerous library events. It has been great to give me a break. I normally sit and read. This particular day I forgot my book. I sat and talked with a friend in the teen section. On the table were some magazines. Gamer magazines and then Seventeen and one I had never seen before called Girl Life or GL. I remember Seventeen from when I was a teenager. My first thought was aww look. I glanced through the pages and it dawned on me that the kid would be into this soon. I started looking at it with a parenting eye. How do I protect her from this? Why are we still assaulting the self-esteem with this kind of stuff? I started thinking about how much these magazines damaged my self-esteem.

I have touched on this in the past. A teacher told my daughter she was tired of her mis-matched socks. We discussed it and confidence was restored. She has returned to wearing what she wants when she wants. I rarely tell her she does not match. Instead I often ask her why did you wear that outfit? Tell me about it? Sometimes its ” just because.” but often she has a reason. Some recent ones were : ” This pink matches the pink in my skirt and I like that. ” “because I like both of them and wanted to wear them.”

If you Google Teenage fashion, you get a decent mix. There are sites I would let her get her information from. Then there are ones that just the images attached to it, I know its not for us. She maybe like me and research it via Google. However the most likely is that one or all of theses magazines will get passed around. Why must we tell our teenage daughters they should never ever leave the house without make-up. How about telling them they are beautiful just the way they are. Skin care is a completely different subject. Lets teach them skin care and how to use make-up to accentuate their natural beauty if they so choose. Lets tell them that they don’t NEED make up. Lets remove the need to beat down the self-esteem via make-up. Let’s change it so that if you have to leave the house without makeup, no big deal. Let’s change it to, I am wearing these shoes because I want to. Let’s change it to – This is who I am.

I am okay with my daughter learning about make-up, fashion, skin care and such. I am not okay with these magazines telling her she needs to do this to fit in. I am not okay with her being told how to catch a guy. I am not okay with her being told what to wear and how to wear it to be “cool” or “popular”. I know its not new. I know many of us dealt with it growing up. I know many of our parents dealt with it growing up. The thing is- Does that make it okay? I can not help but be saddened that we still feel this is an acceptable thing. This is the thing that becomes gossip and we know how hurtful gossip can be. It took me well into my late twenties before I was comfortable with my fashion sense. All I can say about that now is ….WHY? And how do I fix this for my daughter? Can I fix this for my daughter?

I am not okay with her being told to catch the guy she wants, she needs to show some skin. I am not okay with her being told sexy means scantily clad.  After all , for all her faults, Marilyn Monroe was an extremely sexy woman without wearing scraps for clothes.

Teenagers are learning who they are. Why would we want to tell them who they are or restrict that expression of who they are by telling them  how to dress? Why would we tell them that look isn’t right for them? Especially if they do rock it! Do I like that my daughter dresses to match her mood? Not always. Sometimes I wish she would let me dress her and keep her cute and innocent and adorable.  However of all the things that will damage her self -esteem, fashion and make-up do not seem  important enough to do so.

I really hope she has a self-esteem that can look at these magazines and toss what doesn’t appeal to her. I hope she is able to stay true to herself without feeling guilty about it. I really hope I have built her up enough for her to say to the world, This is who I am and not care what others think.  I really hope that one day, individuality is appreciated and accepted.  I have some hope we will get there.  One day this quote won’t apply anymore.

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(image credit- google images)

It saddens me that we even have to do this. It is not that as a parent I would not build and work on a positive self-esteem with her.  It just saddens me that we have to fill it up so high because we know how hurtful and damaging the world is to self-esteem.  It saddens me we start assaulting their self-esteem so young.

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.

 

The precarious state of my sanity, aka week five summer break

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One month down, I am over it. Already. I just want to sleep. I am over the running here and there. I am over the heat. So so so over the heat. I enjoy spending time with my daughter. Really I do. I also enjoy just having Mommy time. Summertime does not equal enough Mommy time. I am again finding myself in need of remembering to keep it balanced. She does not have to be entertained every second.

I have dealt with more flares than I expected. We had more roadblocks than I expected. I always feel like I did something to cause the flare. I let my guard down somehow. I spend so much time reviewing what I have and have not been doing to keep myself at the same level. Have I been resting enough? What about my diet? Have I been active enough? On one hand I know its more of a balance thing and its not possible to keep it in balance always.  Flares are gonna happen no matter what.  I also know I have a tendency to push when I know I am starting a flare. It works for me sometimes, when the kid is in school. It is not working for me with her here. I even added back in almost nightly baths in Epsom salt with menthol and lavender.

I am trying to remember I need to be patient with myself as much as I do with the kid. I knew I would flare. I guess I just forgot how badly I could flare. If that makes any sense at all.So here is what we did accomplish:

Sunday June 29th

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A very mentally stimulating sermon on Sunday. We are lucky to have the talented Barbara G Walker in our congregation. I love when I am intellectually stimulated to learn more on the subject! All in all a very relaxing and enjoyable day.

Monday June 30th

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Monday we walked to my cleaning job. Well I walked she rode her bike. She is getting really good at it. She lost TV and computer privileges so she had to read the whole hour and half of my cleaning. As you can see it was tough.  Neeka loves it though.

We also found this chair for the kid. No we did not buy it. It was some ridiculous price and space is at a premium here. We did however take a picture. It lasts longer that way.

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Spritzers were my thing when I was pregnant with her. She thinks she has a soda.  Little bit tricky mom right there.

Tuesday July 1st

We spent the morning doing Math and reading and we skipped writing in favor of sewing her purse. A light lunch and we were off to a library class.  We car pooled with Princess P and family as the one we went to is ….a bit creepy. There is a large homeless population that congregates around the library. We used to go to this one a lot. It is kinda far away though and there are several nicer ones closer. The wonderful world of invertebrates, so interesting! Starfish are now called Sea stars because they are not really fish. Whatever, Patrick will always be a starfish to me.  There was even a hermit crab……race.  The marine biologist was great and stressed the importance of conservation. He gathers all his specimens from the sea and returns them after the class.  So even he didn’t know how the races would go.

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Princess P was more interested in exploring so I took her out to read and explore. It was a real hardship to spend some quality quiet time with her, let me tell you. The lap sitting, the little hands, the kisses, and yes even the sassy.

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Wednesday July 2nd

The same marine biologist had a class at a different library. He said it would be the same content but that each class is customized to what the kids were interested in. The kid was a bit more willing to touch things at this class , there were a few new preserved animals and live animals. This one we also heard a story about tides and there was a discussion about tides, how they work, how far apart they are, why they are good.

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Another hermit crab race with new hermit crabs. This time they raced across the US….however the oceans were a big draw! lol.

Thursday July 3rd

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Math tutor lesson .. Daddy sat in on this one for the beginning while Mommy snuck out for breakfast with a friend. We did our hour of reading , an a writing prompt. Then we just took the rest of the day off. The  storm passing through is really messing with me. I know I am on the outskirts of this flare and I really want to rest but I also suspect the amount I have been resting is also messing with my sleep at night as I have not slept well the past two nights.  This is a chronic illness rock and a hard place.

Friday July 4th

This year we were really popular and got three invitations to fourth BBQ’s. We were going to go to Princess P’s house however without a car, transportation is an issue. Instead we went to a friend’s house who is much closer.Much more exciting though was that we found our new car! That will probably have it’s own blog post though because I am that excited about it. Here is a sneak peak though

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We had a great dinner…..

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We went downtown and parked the car , we then walked to get Gelatto and then down to the beach.

It was nothing short of gorgeous.

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It took three weeks or better but I finally got to the beach again! Hopefully now that we have a car we can go more often as originally planned.

Saturday July 5th

Today is all about recovering. I have not even gotten out of my pj’s. I have not had coffee. I don’t want to wake up. I have not had the tv on.  I am paying the price for not only being so active yesterday but also my diet choices yesterday. The bathroom and I have spent  a lot of quality time together. I doubt I will even get dressed today let alone get out of bed for more than a few minutes. Medication , possibly a bath and lots of water are on the menu today.  My stress level and even my conscientiousness level will go down dramatically as the kid will be off to a sleep over.

The reality of Week Two of Summer break June 8-14

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We can plan only so much. We can do only so much. This is what life with a child is all about. It is also what life with a chronic illness is all about. Combined the two and things don’t always go as planned. This is a peak into our summer break, what is planned and followed by what actually happens.

Sunday June 8  Tye dye T shirt party at church with youth group  went to girls dance recital

Monday June 9  > Well as Mondays normally go…Things changed right away… Text from cleaning job saying can I come Tuesday instead. Sure!  We run some errands first. We get to the art center for her class. We wait and we wait and we wait.. No one shows up. Apparently there was a problem with the teacher and she had to choose a different class. There was luckily another pottery class available.

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 While she did that I got a small walk in, I wasn’t up to a full walk. We had a fantastic and lovely rainbow picnic under the trees.

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We saw the movie Monster U at the library.

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We also made a short stop to pick more Exuvia from the dragonfly pond. We are giving a lesson on Dragonflies one Sunday for the kids program.

I was laying down by four pm and we were both in bed and almost asleep instantaneously by eight pm.

Tuesday June 10

Since my cleaning job was moved from Monday to Tuesday I had to keep telling myself over and over and over it was Tuesday.  While I cleaned the kid got her morning work done.

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She also did some more research on Dragonflies. We may be becoming obsessed. We even sneaked some math in there. We had lunch with a friend of mine and then we were off exploring.

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It has decided we are going to try and hike every trail at this park this summer. It is like five minutes from our house.

Wednesday June 11 …We had art class…. again this time though it was super hot and muggy and had rained so our picnic spot was not an option. We did end up going for a short walk and sitting at a pavillion for lunch. It was then off to dissect a squid.  It was an awesome class at the library.

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Thursday June 12

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Math tutoring lesson which I sat on the couch and read. We went out to lunch with a friend and then to her house for a bit. Reading time and writing prompt were completed.

Friday June 13

Let me tell you how ready I was for a Mommy day. I didn’t even mind having to pack a lunch for her. It took great restraint not to just push her out the car at the daycare and drive off… I went in and signed her in and did all that motherly stuff.

Despite the rain and storm and stupid people driving on the road. We made it to our destination. It was not a hardship to look at baby stuff let me tell you.

Then lunch . The Cheesecake factor. Need I say more?

 I do?

Here let this speak for me.

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And that was just the dessert. It was amazing. It was exactly what I needed.

Saturday June 14

I had a church meeting. We walked , well I walked she rode her bike, she brought her reading and math to do.  Later we get to tackle grocery shopping. The bright spot is I do have to go to Target.

So far Summer break has been kicking my butt. It has been a rather rude reality check for me on just how much it would take for me to be able to work and parent. I was starting to think maybe I could do that. Not sure I will ever be able to fully let that go.

What actually happened week one (May31-June7)

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We can plan only so much. We can do only so much. This is what life with a child is all about. It is also what life with a chronic illness is all about. Combined the two and things don’t always go as planned. This is a peak into our summer break, what is planned and followed by what actually happens.

 

Saturday:

Well of course she was up at six am. I let her watch Tv for an hour and realized at seven am it was pointless to stay in bed. We were out the door for a walk by seven thirty. Flipped her scooter up on the bike rack and we we were off. We started the trail at seven fifty. About every mile on this walk is a bench. We sat just about every time for a good ten minutes. I think this is why I did not swell as much. At the two mile mark I started stretching then sitting then stretching some more at our breaks. We stopped under the roadway bridge to listen to the bats and contemplate why we could hear them but not see them. OH but we could SMELL them. We found flowers. We saw a frog. We saw some poop, also known as scat

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Then we were off to meet my in laws for a belated birthday get together. On the twenty minute drive or so I had the kid read from her chapter book, squeezing it in where we can.We went to Myakka State Park which has both a boat tour and a tram tour. On the boat tour we learned mostly about alligators, the fish that live in the river and some of the bird life. We saw around twenty alligators. We then got on the tram after a short bathroom break. It is funny I have ridden that tram ride many times. It has new perspective for me as an adult as it did as a kid. I was more interested in the pioneers of Florida. It was fascinating the types of jobs that people had, ranging from Spanish moss gathering to Cattle hunters and even alligator hunters. Learned about a tree I never knew about, a water locust, and its big honking thorns. Pioneers used them for a multitude of things after they boiled them in water to get the toxin from them.  It was very interesting. On the way home I also had the kid read some more.

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We were outside from almost eight am to three pm. When we got home I immediately laid down and medicated.  The kid obviously was still at full steam and went out back to play.

 

Sunday:

We had our normal church morning and then after church a quick grocery shopping run. She also had her last harp concert of the season. All done until next school year.

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Monday:

It was the very last day of school. I originally thought to let her skip. She will have to go with me enough during the summer.

We did not go to the beach.. It was grey and over cast and forecast to rain. We did go for a short walk with a friend. Where we ran into …

 

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MANATEES. This was an unexpected surprise and a very pleasant one. Other mundane things happened, dinner and showers and such.

 

Tuesday oh Tuesday. I could not have predicted this and its just one of those things. I had severe fatigue. I had a severe headache. Even my own movement made me nauseous. It was completely a Pj and tv day. I did manage to get my daughter to read for an hour. That was about as productive as I got.

 

Wednesday we were not really sure what we wanted to do. Low and behold a message asking us to watch snickerdoodle. Of course we jumped at it! I made my daughter bring her book and a notebook.  While snickerdoodle napped she did her hour of reading. The writing prompt for Wednesday was to write using very descriptive words , seeing the manatees at the park.  There was lots of outside time. We even got a two mile walk in. I forgot how much harder a walk is when you are pushing a stroller. It is such a delight to see life through the eyes of  an almost two year old. Little things are big things. Excitement over trucks and squirrels and flowers and most importantly BUBBLES!

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Thursday started our first math tutor lesson. I did not stay for it as I wanted to get a walk in. I had realized I had not taken a walk by myself for a while and it is a good time for me to get some me time in. When I picked her up she was raving about the math lesson. Math is not as complicated as I think mommy! We got most of our hour reading session done and then had lunch with a friend.  The rest of the day was spent cleaning the house.

 

Friday came way to fast and after a rough night of very high anxiety dreams and then lack of sleep. I was looking forward to taking her to the library for a movie. I needed the calm comfort of the quiet sounds of the library to surround me. I stopped at the quarter book spot because who can pass up books for a quarter? NOT ME!!!  When my daughter found me. She didn’t want to watch the movie alone. Sigh.  We ran into Publix afterwards for lunchables and headed to the next library. This one has a nice pond in front and we say on a blanket and had lunch before going inside to get our hour of reading in.

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Then my favorite part. I had been looking forward to this part for at least two weeks. A class on archaeology with a real archaeologist!! It promised lots of hands on fun and it did not disappoint.  On the way home she wrote in her journal about what she learned. The coolest thing she liked? A six thousand year old clam shell.

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These pictures suck because most of the day I felt off just a bit and had the shakes. Could not seem to get a clear picture for anything.

 

Saturday. Oh thank god we made it to saturday. Oh but wait we have a nature hike planed. I know its a short trail. I know its gonna be hot. I also know the kid needs to get out of the house and expel some energy. She didn’t get up til six forty five this morning. That is almost like sleeping in for her. I woke up and thought, ” she isn’t awake yet….is she sick? I gave her the right amount of benedryl last night right? She was congested. Okay well if she is not awake by seven I will go check on her because if I check on her now , and she is asleep, she will wake up. Seven seems much saner to be up than six thirty.” but I didn’t go back to sleep. Just when I thought I couldn’t stand it any longer… She wakes up and comes to our room. Sigh okay.

Next task: Medicate and caffeinate. (spell check you are wrong Caffeinate is too a word.)

Then scroll the internet while waiting for it to kick in. Hoping it kicks in because man, the ache is bad today. The pain is already high.

I had grabbed some snack packs at Publix last night for today’s lunch so it will be hummus and carrots plus cheese and celery ,apples and grapes. Since we will be outside it is water to drink.

 

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I can honestly say it was completely worth it. We learned about Dragonflies, and Damsel flies. The difference between the two. We saw the shells from dragonflies at the larval stage.  We learned that dragonflies are deaf.  It was hot. It was sweaty. There was actually less walking than I had thought there would be so that was an added plus for me today.

We came home and the kid is now doing her writing prompt for the day, What did you learn on today’s walk. She has math home work from her math tutor and she will finish her book today and complete the assignment in the back about persuasive writing. I feel we are balancing the educational with the fun fairly well so far.

 

While it was exhausting it was also a great start to the summer break. It didn’t all go as planned, nothing ever does.

If you read to the end of this….THANKS YOU ROCK!!!

 

 

 

 

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.