Tag Archives: Coping

What it is like

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

 

 

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

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

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

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

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

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

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

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

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

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

Starting a food prep/cook day with a chronic illness

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Recently I was in a discussion about how I handle food prep and cook day to ensure I continue to eat healthy. It is so hard to function by the end of the day that it is easy to just order take out night after night or to skip eating all together. When my pain level rises I rarely am hungry. Having this day is not easy and it is an all day thing. Don’t expect to function much afterwards. Do expect a rise in your pain levels the first couple times you do it. I promise the more you do it, the more you put good healthy REAL food in you the better you will feel.
I think the best way to start is to go super easy. Lets start with Overnight oats for breakfast , egg and veggie muffins for snacking, Mason Jar salads, and what I call freezer meals. You are going to need a lot of mason jars for this but its the easiest thing to use and for some reason, the salads stay good for over five days in them. Not sure why. Probably some weird science thing.

Breakfast food grocery list

 

14 Mason jars with lids  1 large tub of Greek yogurt( ideally this would be plain but you can get away with vanilla) 1 pint blueberries and I think Blackberries are in season so 1 container of those 2 slightly under-ripe bananas Sliced almonds chia seeds Ground flaxseed Fat free milk(you can use any kind of milk , so almond milk coconut milk those are fine too) Old fashion oats Set out seven mason jars. In each mason jar pour 1/2 cup milk first, then add 1/3 cup greek yogurt, 1/3 cup oats, 2 tablespoons chia, 2 tablespoons flaxseed 1/2 cup fruit( you can mix or just do one fruit in each jar) I like blueberry banana . Bananas need to be sliced. 1/4 cup sliced almonds. Shake and put in fridge.

Snack Grocery list

1 dozen eggs

1 bag chopped kale

1 bag sliced mushrooms

Ground turmeric

ground ginger are a great boosting option to this, add to your taste.

Mix all in a bowl. Grease a muffin tin and pour mix in. Bake at 350 for twenty minutes. When done set aside let cool.  Two “muffins” can go in each zip-lock bag. A really smart friend then put her individual snack bags into a large zip-lock bag so they don’t all get lost and spread over the refrigerator

Lunch Grocery list

1 can chickpeas

1 can salmon or tuna

1 package Deli chicken strips

1 head of romaine

1 bag spinach

2 containers feta

sliced carrot sticks( like the little matchstick ones)

4 cucumbers diced bell peppers ( our store has them diced but sometimes i have to slice and dice them too)

Salad dressings of choice

Line up seven mason jars. In the bottom you are going to put your salad dressing. It is recommended to keep this to no more than two tablespoons Then comes your hard veggies, Carrot sticks, peppers, diced cucumbers(each salad should get roughly half a cucumber) Then comes the chickpeas, This is also where you add a meat choice here to mix it up or even some can tuna or salmon. I personally like the salmon. Then you can rotate Romaine and spinach add the feta last.

The snack eggs should be done by this time. Just set aside to cool.

Dinner freezer meals;If you prefer to use a toaster oven and avoid the microwave you are going to need small glass entree size containers. Otherwise glad or zip-lock entree containers are fine.

Dinner Shopping list

2 pounds chicken

1 pound fish

1 bag quinoa

1 container chicken broth(the less sodium more organic ones are the best option)

1 bag parsnips

about a pound of green beans

Sugar snap peas

1 head broccoli

1 bunch beets.

The easiest way I have found to cook this is on a cookie sheet wrap it in tin foil. Then wrap chicken with whatever seasonings you want in tinfoil. I set the chicken in the middle of a square of tinfoil then fold up and close it up. I typically just use garlic rosemary and lemon zest. Sometimes adding Turmeric as well. You can season each chicken breast seperately if you so choose. They will be cooking in tinfoil in their own juices. Repeat with fish of choice, my family will eat tilapia the easiest so that is what we use but you can use any white fish. Typically I just cook it with lemon and we top with parmesean . Slice the cauliflower and our favorite is to coat in coconut oil add some sea salt and some dill seed and thyme. Wrap it in tinfoil same as chicken folding it up. Slice the beets and add a tablespoon of oil of your choice really Wrap those in tinfoil the same way. Parsnips you can peel if you so desire we don’t normally. Same thing with tinfoil normally i just roll them in about two teaspoons of oil and sprinke sea salt on top. All this goes on baking sheet that was wrapped in tinfoil. Goes in the oven for an hour at 350. The tinfoil helps it all cook evenly and makes it so much easier to clean up after. Set four pots on the stove. Cook enough quinoa in the chicken broth for seven servings in pot one. In pot two go the green beans , pot three sugar snap peas and pot four broccoli. The veggies in the pot you are going to slightly undercook. When the meat and veggies are done in the oven take out and put on table. Well I put it on the table. Then put the pots next to it. Line up your seven entree dishes(gladware or glass) and put about 1/4 cup quinoa two veggie choices and a meat. Put top on and toss in freezer.

 

I only know how long it takes to thaw and heat in the microwave. If you can remember to take one out of the freezer in the morning and put it in the refrigerator that makes heat up time about five minutes. If you have it in the freezers no worries its about eight minutes. Of course this all depends on your microwave.

The first two times you may want to ask a friend to help you. Then you kinda find your rythm or groove or whatever and it goes faster; None of this is set in stone. Change up veggies for dinners as seasons change, same for fruits in overnight oats. There are tons and tons and tons of overnight oats and mason jar salads on Pinterest. The freezer meals I came up with several months back for my husband so he could have real food when he worked nights. Like I said with the salads they last up to ten days so you can easily do this for two weeks if that makes it easier.

DO plan for this to be a full days project.

It typically takes me from eight thirty am to about two thirty pm to complete and I normally am only capable of resting after that. I am pretty much spent for the day.

Then you can start exploring make ahead crock pot meals that you can freeze. So easy.with the same premise only these everything goes in prepped but not cooked in zip-lock freezer bags freeze it and then the same though of defrosting in fridge then dump the bag in crock pot. This would make it more family friendly. There are so many crock pot recipes on Pinterest I find it hard to believe you can’t make two weeks worth of food without someone getting bored of crock pot.

I did this entire thing for a friend of mine who also has fibro and she noticed a dramatic difference in less than a week.

Research the recipes you want to use and plan it out. I would recommend planning it on a different day than actually doing it. My brain can’t handle that much with chronic pain also going on.

The truth about flares

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

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

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

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

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

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

Ebb and flow of parenting with chronic illness

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

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

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

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

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

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

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

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

I am still working on it.

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.

Don’t be so hard

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

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

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

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

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

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

Never a normal doctors appointment

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

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

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

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

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

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

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