Tag Archives: Fibromyalgia

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.

 

 

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.

 

Summer break week one(June 1 to 7th) -preview

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So this is technically the first week of summer break. June first through June seventh. I will post on June eighth what actually happened. If you follow me already , you know there will be lots of pictures. This may seem like a trivial thing but when you have chronic illnesses that deter you from functioning , a plan goes a long way. This is just what is PLANNED. We all know how arthritis and Fibro like to mess with plans. I will report back on how they interfered as well. I hope this can and does inspire other mothers , fathers, care takers who have chronic illness to enjoy the summer without feeling guilty and without too many flares. There will be plenty of time for the kid to have free time.  She does however thrive better if she has some structure. She has been doing well on her reading and I plan on challenging her to read an hour at least three times a week if not more. She is currently reading thirty minutes so this will be an increase.  We are also planning on reading at different places. I am hoping this will help her filter a little better and increase her focus.

This first week starts off slow. Monday is a half day of school. Technically they have school but they are watching movies and playing all day. There are also not a lot of kids planning on going. Since I have to clean in the morning she is going for the morning.

Monday: Drop kid off at school at eight thirty. Go to cleaning job. Go to Farmers market.Pick up kid after lunch. Come home. read outside with the dogs for an hour.

Tuesday : Sleep in. Read for an hour. Clean the house day. including the kid’s room

Wednesday: Take kid on four mile walk round trip. Take her scooter so she doesn’t complain too much. let her cool off in the lake. pack a snack. come home. Read for an hour.

Thursday: Nine am Math tutoring lesson.  Pack up and go to the beach. Set alarm for every seventy minutes to reapply sunscreen.Read for an hour at the beach.  Picnic lunch at the beach. Come home. Hopefully not too sunburned.

Friday we have a movie at the library. They are watching Planes. Then we will probably have a picnic lunch. We will then drive about twenty minutes south and arrive at another library for a two pm Archaeology class. This is the description of the class:

Description:
 Look under a microscope with USF Archaeologist Rebecca and discover artifacts from the past you never knew existed. See how these scientists solve historical mysteries. Ages 6-13.
Saturday: Dragonfly nature walk….a guided walk in a park we visit often.
I can’t wait to see if it lives up to the description! I am also hoping to be able to sit in. I adore this kind of science!
Well that is the first week. We will see what all gets done!

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!

Must be nice to lay in bed all day

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I think this is the number one comment that drives me nuts.It must be nice to lay in bed all day…to stay in bed…..and things to that effect. If you are just lazying about and can get up and down whenever you want without the slightest hindrance…..maybe. If you have no problem being upright when you need to move because you are getting sore from laying in the same position…..maybe.If that is all you are planning on doing and you are pushing things aside because you WANT to …..maybe.

I really struggle with the whole resting part of chronic illness. I know I need to. I know my flares would be less. I just have never been very good at doing nothing. I struggled for awhile trying to balance not working , saving energy to parent after school and having a life. If I stay home and rest, it is really hard to get up and moving after getting the kid because I expelled more energy than I realized trying to rest. I am home so I should be doing dishes, or laundry, or getting the kid’s room organized again. Maybe I could reorganize the pantry. I could even sit in a chair for most of it. For the record that is not resting.  I can’t sleep during the day if I want to be able to sleep at night, so a nap is out of the question.

When I do force myself to take a rest day and stay in bed. It helps. Imagine that. It may take me eighteen hours or so of resting to be able to function again but I can function again! The trick is not to go crazy and clean the house and do to much and exhaust myself all over again. This is where pacing comes in , another area that I am not so good at.

It is a constant battle though to keep myself in bed because I know thats what my body needs. The guilt starts to eat at you that the house is falling apart. That you can’t keep up the house because your body requires so much rest. If I did clean the house and push myself then I often have nothing left to do anything with my daughter after school, again the guilt.

When I say I need to stay in bed all day, it is not a luxury. It is a requirement. It is not one that I admit to and concede to often. When I do it is serious. I have probably pushed myself for too many days in a row.  I am better at forcing myself to take these rest times or days. I still have progress to be made here.  I still need to let go of the guilt. I still need to stop while I am ahead. When people say this to me I struggle to be nonchalant about it. I try to just shrug it off and not let them know how hard it is.

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!

 

When Judgement invades

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Stop.

Just stop.

Stop assuming you know what my life is like. Stop assuming because I don’t work that I have time for everything to get done.

It came in a seemingly innocent conversation with my daughter. Something a teacher had said to her. A teacher I have had issues with her making assumptions about me before. She said I should be matching her socks and she was tired of seeing my daughter wear mix matched socks. First of all ,  that is not how I raise my child. She is free to express her fashion sense in anyway she choose. Kids have so few truly independent choices, I choose to let her wear what she wishes. Second of all, how dare you try to to push my daughters creativity and her general self confidence down. Because whether that was the intent or not, it is exactly what happened.

I responded to my daughter and said, I don’t match your socks because I love your sense of fashion and you can wear your clothes how ever you choose. Her face broke out in a big smile and she threw her arms around me and kissed me.  How dare that teacher crush my daughter in even a seemingly insignificant way.

I am tired of people assuming what I should and shouldn’t be doing, how I should or shouldn’t be raising my child. It should not bother me but it does.

I walked off my frustration and cleared my head of this to a certain extent.

Why can’t people just love? Why?

Sticks and stones will break my bones but words will never hurt me.

If only that was true.

I look like a healthy thirty something mother who is choosing to stay at home, but I am not.  Its always hard to see the judgement in others eyes when you tell them you have multiple chronic illnesses.  If only degenerative disc disease had some outer detail. You can’t see it, but I can feel it. I wish I couldn’t. If only all the aspects of Fibromyalgia were visible to the naked eye.

The world screams to conform to what is socially acceptable. Chronic illness is not socially acceptable. That is the cold hard truth and until it is accepted, judgement is a fact of life for us. Something that is often dealt with on a daily basis.