Tag Archives: lifestyle

What it is like

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

 

 

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Compassionate acceptance of love (#1000speak post)

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Compassionate acceptance of love (#1000speak post)

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

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

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

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

 

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

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.

The real cost of being sick

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 There is so much more to chronic illness expenses than doctors appointments, tests, and prescriptions. Those are the more obvious expenses. Those are costs that you can control to a certain extent with the type of health insurance  you have. These are some of the less obvious costs…

Lets start with diet.  I don’t mean the kind of diet you go on when you want to lose weight. I mean the kind of diet that completely changes how you eat. I won’t say that I avoid trigger foods altogether–I am human. I know [emotional? you just said “eating” which is good!] eating it is not the best idea, but sometimes it’s emotional therapy.

Many times the prescriptions that people with chronic illness take can cause digestion and gastrointestinal  issues as well. What that means for me is I can not rely on a good quality multivitamin to catch any lapse in diet. A good quality highly absorbable multivitamin can cost fifteen dollars or more per month.

The reality is fresh fruits and vegetables cost almost twice as much as canned or frozen fruit. Why is this an issue? Well this ties into the digestion issues. Many people with chronic illness cannot process the additives, extra sugar, processed sugar, and preservatives as well. This makes canned and frozen fruits not the best choice. I am not saying I never get these but its not my preferred choice, and I always have more issues after eating these foods.  I am lucky in my diet the only issues I have are preservatives, additives, lactose and corn.  This still makes it difficult, it could be so much worse.

While my family normally tend to be fairly healthy eating to begin with even before I got sick, it’s not even a choice now. It is how we have to live.  This is not necessarily a bad thing, just another hidden cost people don’t think about. I did do about six weeks of juicing with fresh fruits and veggies. It worked really well, and I did feel better. It cost me  about forty dollars a week. When it came down to it, I had to start focusing on making sure my family had enough groceries for the week and not just enough to juice.  Its great to juice or make smoothies, but I still have to feed my family.

Next we have what I like to call my toolbox. A list of things that you can do to help alleviate some of the chronic pain that goes along with chronic illness. Oh just take an Epsom salt bath every night. I use Icy hot and love it. Pick up some Tiger Balm. Pain patches, supplements, and exercise are what helps me.  It is one thing to say that but here is the hidden cost.  To be effective you need to use at least a cup of Epsom salt per bath, while recommended amount is two. At one point in order to take a just plain Epsom salt bath every night I was paying roughly fifteen dollars for salt each week.  This is just plain epsom salts. This was not for the ones that have added benefits of lavender or menthol or eucalyptus, rosemary or ginger added to them.  Not to mention its not like I can just jump into the bath tub any old time I need to.

Then you also pick up a variation of rubs, creams, and ointments. Each of these run from as cheap as five dollars up to twenty  bucks each. Since we often use them multiple times daily, we might get a week or two out of a tube or bottle–if we are lucky. Pain patches, however wonderful they are, are one short use and they are done. Five dollars for five patches that if you stretch it can last you four days. It gets to a point that you can easily be spending fifty to sixty dollars a month on these kinds of things.

There are some more natural remedies that you can take to help bolster the prescriptions that often you have to take. I have gone off a lot of prescription medications and have gotten down to my bare essentials so to speak. My bare essential prescription cost is about  [$150] {or} [One hundred fifty] every three months.  It was almost that a month at one point in time.

It is easy to say “go pick up a supplement.” Looking at quality matters a lot here. Turmeric, which is great for chronic pain, is a minimum of ten dollars for a month supply. Then often people in chronic pain use Magnesium which can be relatively cheap, again the type and quality counts here. The one I have had the best success with is fifteen dollars a month. I use a strong omega three supplement as I have both heart issues and mental health issues, and that helps with both.  I also take Melatonin as opposed to a prescription sleeping aid.  It is not hard for me to spend fifty dollars or more on supplements [a month? how long?]. Fifty dollars is where I am at right now with just the basic cannot-do-without supplements.

This is really just the first layer of unseen costs of being chronically ill.  This is not even taking into consideration that the kind of mattress you sleep on matters, keeping shoes fresh and supportive by changing them out every three to six months.

This does not even take into consideration that people that have chronic illnesses tend to not be able to work but yet not meet the terms for disability through the government.  I am lucky I have decent insurance and my costs are low comparatively speaking. Shockingly enough, to many the answer is not through medicaid, I actually paid more and struggled more going through the medicaid system.  The stress the system puts you through to jump through the hoops to get what you need……it’s unbelievable.  Even with the good insurance we have now my out of pocket expenses are anywhere from 100-150 a month. This is not including prescriptions that are significantly cheaper with insurance.  This is what I have it boiled down to as essentials. It could easily be twice that.

I often deal with people who are very flippant about my chronic issues because they are not visible nor are they the same from day-to-day.  To date my diagnoses are: Myofascial Pain Syndrome; Chronic Fatigue Syndrome; Fibromyalgia; Degenerative Disc Disease of cervical, thoracic , and lumbar spine; Irritable Bowl Syndrome triggered by a corn intolerance; Supra-Ventricular Tachycardia;  Raynauds; malabsorption of Vitamin D, Potassium, and Magnesium; severe outdoor allergies which borders on allergic asthma; OCD with tendrils of ADD.

I don’t look sick. I don’t like to talk about being sick or what I can or can’t do. If I am discussing it in detail with you, I trust you a lot.  I am not willing to continually prove my conditions to people over and over. What would I do to do that? Carry X-rays and MRI reports and blood test results around with me constantly? I am not being lazy or taking the easy way out and yes I can read that in your eyes. After dealing with Doctor after Doctor after Doctor who did not believe me, I can tell exactly who does and doesn’t believe me. Some of the disbelief comes because I was super active and really did a lot one day. The next day it takes everything I have to get out of bed. I am paying for being so active. When you have a kid, you tend to push yourself to do more, for them.

I have gone through the disability process with the government. Essentially they believe I have the issues I have but because I can parent to some extent and function to some extent, I am not disabled. What I was doing when I was working and trying to parent was not functioning.  I was a mess. I could not enjoy any time with my daughter. I focused on getting through the day til I could medicate and hopefully sleep. I had no quality of life, not to mention the immense damage to my organs that the prescriptions were doing. It has taken two years off of three medications to get my liver and kidney functions to somewhat normal levels. TWO YEARS.

It has been a long hard road to get my health back to some extent.  We are lucky that we have family and close  friends who understand and help us. We are functioning, barely, at a fourth of what we were earning when both of us worked full time, and this is with my husband working two jobs to help support us. If anything ever happened and he could not work, we would be completely screwed.

************************************** some exciting news in store***********************************************************

 

Below is a brief outline of the campaign, which illustrates what we’re trying to achieve and how people living with chronic conditions can help.

 

Via the “Hidden Cost of Chronic Illness” campaign, Debt Advisory Centre aims to raise awareness and visibility of the challenges faced by those living with chronic and ‘invisible’ conditions. We’re also conducting our own research into perceptions of chronic illness, especially in relation to the work environment.

 

 

We’d like to know the following about the patients that use your services;

 

  • How long they’ve had their condition.
  • What their specific condition is.
  • How it affects them (professionally, socially, emotionally)
  • What things they have to purchase in relation to their condition.
  • What other financial disadvantages they face.
  • Roughly how much they spend per month in relation to their condition.
  • How they feel others perceive their condition (employers, friends, strangers)

We’re keen to gather as much user-generated content as possible and welcome contributions via email and video.

 

Once we’ve gathered the information, we’ll combine it with research we’ve conducted ourselves and research supplied by other organisations ourselves. We’ll then be distributing and sharing those findings with the media.

 

Patients can find out more by visiting the campaign page http://www.debtadvisorycentre.co.uk/advice/Illness-and-Debt-What-are-the-Hidden-Costs-of-Chronic-Illness-0-4163-0.html

 

Please note, if you aren’t already aware, that Debt Advisory Centre is a fee-charging debt solutions provider and not a charity.

 

Don’t be so hard

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

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

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

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

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

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

Never a normal doctors appointment

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

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

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

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

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

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

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

Start

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That is the key. First you have to start.
Many people assume because I go on walks, I am feeling better. It looks impressive that I walked two miles.It is impressive but it did not happen overnight. I has been over a year though since I started walking and it has been slow and steady increase.

When I first started half a mile completely fried me for the day. It was all I could do to make it back to the house.

I didn’t give up though. I kept doing it. First it was one walk every three days.. Then every other day.. then every day.

This allowed me to ease  my Fibromyalgia and arthritis ridden body  to walking. Giving myself time to deal with flares when they happen.

It wasn’t about stopping when I hurt. If I did that I would never get anywhere. You will find that there is a period of time that the walking makes you feel better. It is typically ten minutes into the walk for me. Then I can go for a bit a feel pretty decent. Then the pain returns. That’s when it is time to turn around or be heading back.

Be gentle with yourself. Fibromyalgia does not like it when we try to minimize its impact on us. Remember that you need rest after these walks. Typically there is not a lot left for me to do for the day when I take my walks. If I take them too early in the morning I am completely fried for the day.

Track your walks with a pedometer. I use an app on my phone. It helps to keep you on schedule with walking. It is also an added bonus of something to show your doctor to show you are trying.  It is also fun to see the patterns you walk on the GPS mapping part of it, at least for me it is.

It is also important to remember to hydrate yourself. If you don’t like the taste of water. I recommend chugging at least eight oz of water prior and after the walks. Remember to keep hydrating through out the day.  I have found that people with Fibromyalgia need more hydration that normal.  It helps your muscles in so many ways.

Something else that helps is having someone else go on the walks with you. When I first started out I went with my husband or my best friend, neither of them have chronic illnesses but, they know when I am pushing myself too much. Now I tend to walk with another friend who has chronic illnesses. We keep each other accountable for walking. Now we tend to walk twice a week and we are averaging two and half miles. Sometimes it is too much for me, sometimes it is too much for her. We get each other through it.

Keep playing around with it and find what works for you. It maybe that it works better for you to walk in the morning. It maybe something you do by yourself,for yourself. I promise you will find it helps in so many ways than just exhausting you.

Walking can help improve your mental state, ease anxiety, it boosts your energy levels, it increases your Vitamin D intake(since most people walk outside in the sun). It strengthens your heart and other muscles, it aids weight loss. It can also help prevent dementia and lower the risk for other disease. I also find that when I am dedicated to walking, I sleep better at night too.

It is to your benefit to get out there and walk. So get out there and just START!

 

What eating has to do with Fibro

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First and foremost…. before changing your diet…consult your doctor. It may seem like a silly thing or something you would shrug off. It can be a big thing. SO, talk to your doctor first!

I know a lot of people probably expect this to be about night shades and to stay away from them. I really don’t have any problems with them. Some people do.  It is something to look into for each person individually.

Fibromyalgia made me even more sensitive to additives, preservatives and such than I already was. I was diagnosed with artificial coloring allergies when I was five. Am I great at avoiding these? Nope, not even close. There are some things I won’t give up.  My snickers and Mountain Dew are non-negotiable for me. They are also not things I indulge in everyday. Honest. I don’t drink Mountain Dew every day.

When I am flaring or thinking I am starting a flare, I turn to more and more fresh fruit and veggies as snack. The one thing I have found to be true no matter what is that most people with Fibromyalgia have a distinct lack of magnesium. So break out the almonds, cashews, pumpkin seeds and pine nuts for snacking in between meals. In the meals I tend to stick to dark leafy greens, Plain no fat yogurt sliced bananas and I might even top it with some flaxseed and honey, or my other stand by….lentils.  Fish and brown rice is a good meal as well that is rich in magnesium. Sometimes that is enough. Sometimes I end up mixing some Natural calm which is an easily absorbed form of Magnesium.

The other thing that is essential for anyone but even more for fibro people is hydration. Drink water. Drink more water. When you think you have drank enough water….drink another glass.  Constantly throughout the day. I often joke that the first thought on my mind when I wake up is coffee. I actually take my pills with about six oz of water.  I try to stick to the rule of anything I drink that is not water, I drink twice as much water afterwords. If I have a 12 oz soda, I drink 24 oz of water.  Not to get too gross but pay attention to your urine. It is a good indicator of where you stand hydration wise. The darker it is, the more water you need to drink. I am really a stickler for just plain water. Occasionally I will use Mio or something similar. I know some people don’t like the taste. Truthfully I didn’t either. I just told myself there was no other choice. For months I would gulp 8oz down as fast as possible. Now I wouldn’t say it was a love affair but water is good.

The best way for you and your DOCTOR to tailor your diet to help you is to keep a food journal.  Keep one for at least six weeks minimum. It needs to list any and all symptoms along with the foods and drinks you are having.  This was how I found I have  a pretty severe intolerance to corn. You will start to see some consistencies in what you eat and symptoms you have. Don’t discount symptoms that start two to three days after eating a food either. You are looking for patterns here. It is not always an immediate response. Explore what happens when you cut out gluten, or lactose..Or both. I can handle lactose and gluten . I tend to do better when I don’t drink real milk which is okay for us since my daughter is lactose intolerant. It can be hard when others don’t have the same dietary restrictions. Ideally also incorporating anti inflammatory diet aspects in during your food journal time is a worth while investigation.

Do I cheat on this? ABSOLUTELY. There are days that sugar and caffeine and sweets are what keep me going. Is it good? Nope. Is it necessary? I guess that is specific to each person. For me it is.  Are there days that I stop at whole foods or our other market for a nutrient rich smoothie…. Absolutely. You do what you can when you can.

Start small. Start with the food journal. Discuss things with your doctor. A tip is to ask to be scheduled for a longer visit so you don’t feel rushed.

The only other tip I can think of is… this ..and this kinda rocked my world a bit… Morning is not always the most ideal time to take a multivitamin. For me, most of the time ten or eleven thirty is a good time to take it . There are mornings I wake up and know that it needs to be in my morning meds. I could get on my soap box about multivitamins. I will only say….quality counts. Also finding one that is a MultiVITAMIN and a MultiMINERAL is superb…It is always a good investment in my opinion. ALWAYS.

So that is all well and good. Then we look at what doesn’t help, often its the things us mothers use to survive.

Sugar is a big for me.  A really big. I have this little thing called yeast. It likes to grow out of control. It corrupts my brain into believing we NEED IT.  A good substitute for sugar craving….grapes. They have a lot of sugar in them. It works for me most of the time. When I am trying. Let’s face it.There are certain times of the month that grapes are not going to cut it. Unless they are fermented. Then they might have a chance.When I do indulge I like to eat some yogurt and extra water to flush.

The biggest thing I have heard is that , its too expensive to buy fresh fruit and veggies.

If you feel that then you need to look at what you are buying, and when you are hungry.

Buying veggies that are more filling like root veggies helps. Carrots are a great snack. They are also surprisingly filling. Celery with peanut butter. Filling fruits would be apples and pears. We also like to snack on Cucumbers and cherry tomatoes. Sometimes we mix them all together for some variety. Look up serving sizes and seperate it out into ziplock bags. It surprised me how long it lasted. We were still at the store every three to four days for fruits and veggies. Save your peaches, berries, kiwi, and other citrus fruits for balance in meals and desserts.

Pay attention to how you feel after processed foods. Chips, pretzels, snack cakes, and such. Your body is talking to you.  There have been times I have known within minutes of trying something that there was no way I was going to tolerate that. No matter how much my brain tried to tell me how good it is.

The less packaged processed foods I eat the less often I need Tums or Rolaids to come to my rescue.

The best eye opener for me was that first week of my food journal. My body was screaming at me. Telling me what was and was not working. I wasn’t listening.

I can’t say I always listen. I can however say when I don’t listen I pay for it. It is all about balance.

A lot going on in there

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On the tail edges of my cymbalta withdrawl, I have been completely off of it for four days. I will be starting prozac on monday. All that to say, I have not been able to handle my normal amount of stimulation. I can’t have the tv on while I am on the laptop while also sending texts, while having at least ten tabs open on the laptop. I have been reading more. Sometimes it is my current books that I am reading,yes books as in plural..I have three going right now. Sometimes it is blogs. I have taken the time to go a bit slower. Really digest what each blog I read is saying. You know I have been really big on #Depressedbutdressed in collaboration with It’s not my workout.  For once I have been taking the time to follow embedded links. It is where I stumbled upon One Little Word (http://aliedwards.com/shop/one-little-word-2014). I have been thinking and reading other blogs that have posted their word.

What would my word be?

Sorting through words that describe me, or that I want to focus on, or that I want to be better at, I come across these.

Love

Honesty

Integrity

Courage

Thrive

Inspiring

Starting to break these down into what I could do with them on my own since I can’t pay for the workshop right now, it was interesting to me. Even a little eye opening.

Love being the first one. Without love I am nothing. If I don’t love myself I can’t love others. Love must coat and cover everything I do without smothering at the same time. There is one song that I will always always always sing out at the top of my lungs when it comes on. It is the one that when I am having a bad day, it starts to turn it around. Love is all you need by the Beatles. It is not by coincidence that the very next song on my playlist after that is Eight days a week. I may have a thing for the Beatles huh. I mean those two songs just say it all.

Honesty is the second one I keep close. I love the TV show Bones primarily for Dr. Temperance Brennan. I admire her ability to be honest,even if it is socially painful sometimes. Really we need more of that. Maybe a little less of the ego but, I have to say she has earned her ego. When I was in the midst of teenage years and untreated ADD/OCD I was really horrible at honesty. For me this word still circles around love as well. When you love someone you want to be honest with them. When you start by loving yourself, you tend to be more honest with yourself. Even when it is not pretty.Once you do that, being honest with everyone is a natural next step.

The third one may catch some of the people who know me off guard. I have been told over and over I am so courageous to deal with what I deal with everyday. I am glad I project that. It is not however how I always feel. Most of the time I feel like Piglet. Piglet doesn’t even realize that sometimes just the fact that you keep going is courage. It is something that escapes my notice a lot. Yet again I find that this word ties into the first two. Because I love myself, I can be honest with others when they say I so admire all that you do on a daily basis. I can tell them, thank you it means a lot to hear that because I rarely feel I am doing anything really major. I am again forced to stop and think about what exactly I am doing everyday. What I am doing that they admire.

Thrive has really what the last year almost two years has been about for me. Finding ways to thrive in spite of everything that is going on. Finding happiness during hard times.  I am not letting go of thrive either. It is an ongoing pursuit and goal.

So the last word I came up with is inspiring. I didn’t start my facebook page or this blog for anyone other than me. It was more of an attitude of this is for me and if it helps someone else great. It has been slowly shifting to , I want it to inspire others. I want it to show others that we are not just our illness. I want it to show others that there is no reason you can’t thrive in the life you are living right this very moment.In an odd way this started about me, became about others and is slowly becoming about me again. Becoming about me as others inspire me or ask for advice, I tend to go back inside myself and look at things. I have made progress in areas because others asked for advice and I had to really look at something. Often times it was something I knew I was sort of dealing with but not really. Others have become my inspiration to keep making progress on my own issues.

I don’t really think I could find one word that I would stick to. I will keep thinking about it and I have followed some specific blogs that are participating in one little word. I want to make sure that my ADD does not let this project fizzle out of my head and get lost in the 1,324,4545,4591,342,528 other things that my brain likes to bounce around.