Category Archives: Arthritis

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.

 

 

Time to dig out the toolbox

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I didn’t realize how much my body and my mind had started to crave my walks. It is getting hotter out. I have been to tired, too achy. I put them off. When I did try to get back in the swing the heat and the humidity have reached the point that I need to cut my walks in half. Trying to walk the full four miles left me swollen for hours and too depleted to function. This is where my brain and my body don’t agree. My brain says you can do it. My body says not even close.

I know that now it’s not as hot and as humid as it will be in the dead of summer. I know this is just the beginning, which is why I need to get my Fibromyalgia/mental health toolbox out. I need to get it up to date and keep it fresh in my head too. We need to have a good balance of things that I can do inside and outside. I am not saying I am perfect at this. Far from it in fact. This is why it is important to have it out where you can see it.

What? Don’t you know what I am talking about? What toolbox do you ask? Well if you ask me this is essential and you probably already do it on some level.

This is a list you keep handy to help you remember ways to pace, function and recover.

This is mine. What works for me won’t necessarily work for you. However, this can get you started and give you some ideas. Slap this list up on the refrigerator. It needs to be somewhere you will be often. Chances are you will be going to the refrigerator at least once a day. The bathroom is another idea.

I pulled mine and looked it over and updated it a bit. As I am sure many of you know, what worked six months ago may not necessarily still work.

Pace tools

1. Schedule classes/activities in the early morning or late afternoon as much as possible.

This now I would probably change the morning and early afternoon. Late afternoon is not a great time for me to function. I don’t want to have to jump out of bed either so anything after nine am is preferred. Of course, this is not always possible. This is where other aspects of your toolbox will help

2. Take medications on time.

Sigh. I do this one really well for weeks at a time. Then, I fall flat. It’s four hours past medication time and I wonder why I am so exhausted and my heartbeat feels so fast. I then start setting really annoying alarms to go off on my phone. It doesn’t help if you look at it and turn it off and still forget to take your pills. I have done that too. The more annoying it is the more likely it is I will stop what I am doing and take the pills.

3. Schedule Recovery time after activities.

If I am going out and we will be out an hour, I am probably going to need at least half hour recovery time. This is not one of those things I follow all that great. I should, I really should. It really does work. I can get a crapload done around the house if I do it. Twenty minutes cleaning thirty minutes resting and so forth.

Function tools

4. Take a water bottle!

Hydration is of the up-most importance. Obviously it is for everyone. However, our chronic illness/chronic pain bodies are working twice as hard. Drink water! Bring it with you, don’t assume they will have it. If you are not keen on the taste of just plain water, try infused water. Try not to use artificial flavors. These may seem to help you drink water, but it really doesn’t help.

5. Eat!

I can’t tell you how many times this one catches me off-guard. Wait. I eat. I ate this morning. Oh, that was six hours ago. Yeah, those shakes and feeling light-headed might just be related to a lack of food. Specifically protein will be the best bet. I keep roasted peanuts in the car almost at all times. It’s amazing how fast a bit of protein and water will help me recover enough to function until I get home.

6. Focus

Sometimes what we have to do overwhelms us. It can overwhelm anyone, even those without any illness. When I am having trouble functioning, I try to focus on just how much longer I have to do this. How much longer until I can sit down, lay down, be home? This is where some of my recovery tool box items come in handy, like deep breathing.

Recovery tools

7. Meditation

It took me a long time to get into this. I had no idea there were so many types of meditation. The more I explored the better I got. The first few you try won’t necessarily be it for you. I can tell you there are plenty of Guided meditations on YouTube that the person’s voice is like nails on a chalkboard. There were ones the background music drove me nuts. I think a few even made me twitch. You can find a lot of downloads for Guided meditation which is what I recommend. Self-guided was of absolute no use for me. I need someone to tell me breathe in and count the seconds and all that. Tell me what I am supposed to be seeing in my mind. Tell me how my body is supposed to feel. Guess what? It is completely okay if this is not for you. It is completely okay, actually really good if you fall asleep. I often use meditation for this exact purpose. When my brain is focusing on every twitch and pain, my brain is going a mile a minute of all the things I should have done today. It redirects my mind and before I know it, I am asleep.

8. Ginger Tea

This stuff is magic. Ginger works so well for muscle relief. I can’t tell you how many times Ginger has aided my recovery time. I will make it extra strong in just a few ounces of water and toss it back if I am not particularly in the mood for tea. Ginger is scientifically proven to help. This combined with number nine has taken the place of aspirin or Advil for me.

9. Ultracur

Curcumin has so many benefits, not just for people with chronic illness/chronic pain. It has completely changed the way I medicate. If you tried this and were on prescription pain meds, chances are you didn’t notice a difference. I never got the full benefit of it until I had to go off my prescription pain meds. It easily took several weeks for me to notice a definite difference. It took six months before it completely replaced Advil. I am now working on trying to stop taking Tylenol all together at night. Until I found Ultracur it was hit or miss if I could find fresh Turmeric root. Quality products of Turmeric or Curcumin were out of my price range for the amount I needed to be taking per day. Ultracur is by far the most reasonably priced I have found. Every now and again I run out and I realize just how much it does help. It’s very subtle so it’s effectiveness can easily be missed.

10. Epsom salt bath

Okay so this one wasn’t working for me for several months. It drove me nuts. Nothing like looking forward to relief and it not coming. I still haven’t been able to soak for twenty minutes but I have gotten to ten minutes without getting too uncomfortable. Adding essential oils can greatly increase the effectiveness. I use them but there are times I just use Epsom salt. Muscles like magnesium. They like it a lot.

11. Natural Calm

It’s a specific type of magnesium that you drink. It doesn’t always have the greatest taste. However, it works. This is another thing I will take like a shot of alcohol. Just toss it back. Natural Calm tends to work quite quickly. Start your dose very small and work up to the full dose if you need it. Your doctor should be consulted to see what your magnesium needs are and how much you should use for relief. Of all the doctors I have seen, I have yet to have one tell me not to take it.

12. Tart cherry juice

This is another new one that I added not too long ago. It was primarily to help sleep but it also seems to help a bunch of other things. I didn’t like it when I first started drinking it. I struggled to get the minimum two oz down. Now I am more likely to pour at least a six oz cup of juice a few hours before bed.

So there they are, things in my toolbox.

Please do share what is in your toolbox! Let’s share ideas!

Some funny title goes here

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I had this whole post planned out in my head. I planned to write it on Sunday. Fibromyalgia and arthritis just laughed and laughed and laughed and said “No”. So the post that I have in my head will stay there a bit longer.

Here is this instead, how to shut Fibromyalgia and Arthritis up in three oz. It is not necessarily tasty.Think of it as taking a shot of alcohol. Some really nasty alcohol but the idea remains the same.

What you will need: A juicer

1 lemon- use 1/4

some ginger root – 1/4 inch

four to five pieces of Turmeric root

About an inch slice of cucumber

About two inches of celery(not pictured because I added it last minute)

three cloves of garlic

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With in twenty minutes my pain levels were noticeably less. I don’t think an hour ago I could have even typed this much.

Reconnecting my soul

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

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

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

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

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

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

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

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

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

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

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

Sparkly happy on a cloudy day TTOT #83

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Ten Things of Thankful

Well it is Wednesday before I have even started this post.
In my defense I have been really busy. There was playing with baby goats, and working, and walking and more working. Some house cleaning, some waiting on repair man. Oh and a parent teacher conference and that was just Sunday to Wednesday.

Honestly Monday was a crap day. Outside it was grey and dreary and foggy. In my head it was black and thundering and foggy too.

It is however my first item on my list of thankful’s. Being that it is now Wednesday and I can look back. I am thankful for the bad days because I can see how far I have come. They are just days now. Not weeks. Not months. Days. Sometimes there is no plural to that word, as in day!

Let’s back track a bit though. Sunday the besties were coming over and the house was a mess. Fast thinking as I am. Lets take some carrots and whatnot down and feed the goats. Easily we can spend enough time there and then walk to church. Oh had I only known how fantastic this would be. I would have brought instant hand sanitizer. We got to the goat pasture and they were penned up inside the pasture. However when we had walked by the barn we heard people talking. Let me just go and see if they will let the goats out. Farmer Brian did one better. He let the girls come back and go into the pen. He showed them how to pick them up after you pinned one down. Goat kids are pretty darn fast. The giggling, the petting, the naming of the babies. Oh so much fun was had. Farmer Brian even had a bit of an ulterior motive. He let the girls catch the ones he wanted to inspect. OOOOOOHHH the squeals! To be helpful and have fun. Well nothing beats that.  However it was a good ten minute walk and I felt like I must have said 100 times.Don’t touch your face. Keep your hands where I can see them. AS soon as we got to church they were marched into the bathroom for a good handwashing.  Despite our best efforts. We still brought goat poop to church on the bottom of our shoes.

Of course there are pictures. I will only share a collage instead of the 35 I took in twenty minutes! (thankful ten,I was still able to enjoy the girls joy and still feel I had adequately documented it for treasured memories later)

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Thankful two is this awesome project that has brought me so so so much happiness and mood boosts and joy already.

#1000speak

Compassion has been something that I have been dwelling on more and more. When Lizzi tagged me in this project. I just can’t even describe how fast my brain said. THIS! Compassion for others and what they are going through.Compassion for myself. Giving myself just as much compassion as I would another. Just stopping and instead of instantly judging and being sassy and sarcastic to look at (fill in blank) with love and kindness. (Thankful nine is for perfect timing, a lesson I am still learning)

Thankful Three is a fantastic Parent teacher conference. I didn’t feel pressured to get my daughters learning disabilities diagnosed or to have her medicated.(thankful eight)  There was a free flow of communication and I really felt empowered leaving that conference.

Thankful four is a working dryer. Oh my gosh how much this makes me happy is ridiculous.

 This brings us to Thursday.

Oh look I forgot to fill this in,  but am too lazy to go back through and change the post.  Thursday I got to see two hawks rather close. They are so regal and gorgeous. They have a quiet look of arrogance that only a bird-of-prey can have.

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(Thankful Seven)

Friday…

The day I decided not to function to loose myself in the vampire diaries and go to my reading spot extra early.

I had clawed my way out of the dark stormy turmoil of Mondays brain and the weather seemed to mock Me. Here I was happy and content. It was grey overcast and foggy. I could sit in my parking spot look at the three trees feel the cool breeze and the baking feeling of the sun. As I sit crossed legged in my car with the windows down because fuck you hips and knees and ankles. Until it brings tears to my eyes to do it -I will sit how ever I want not how arthritis tells me to sit, even if I have to hand maneuver my limbs into place. I could appreciate the beauty. I could say, yes I know I am teetering on that edge. Several years earlier I would not have even realized I had wandered off the path let alone was lost. (thankful six)It doesn’t make the depression feel any less imposing. The problem with depression is it always wears you down…I know I will always have a day where I just can’t function. I don’t want to function so I have nothing to fight it with. I often know it is coming and fight to get it to a day where just maybe my world won’t fall apart if I don’t participate for a day. I can do all the deep breathing and meditation I want it just makes me sleepy but yet I won’t sleep. In the days before that no functioning day I feel myself grasping desperately at my self help tools. Sometimes I even feel them slip between my fingers despite my tight grip.they ooze through my fingers incredibly slick and slimey and smooth all at the same time.  That day of not functioning I read a lot of blogs. I read books I watch mindless TV. My thoughts don’t often bring me to tears. I have found I have to watch super sappy TV shows to cry to.There fore I am not crying for myself but for the TV show. Yes I am crying for those TV characters not myself. Perhaps if I could here and there cry I could avoid a no function day. That however did not happen so as odd as it may sound. I am thankful my nonfuctioning day came on a day I was able to be nonfunctioning. That is thankful five.

So now that I am only at five. Time to go through my week again,thus numbers that seem out of order-but are not.

update on product review of ultracur

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I have a habit that when I find something that works, I am not always picky on the brand. This one I am. I can honestly say it works better than anything I have tried before.

Nature’s Made and Sundown being my normal go to brands. I ran out of Ultracur and I had some sundown on back up. My daughter actually takes it to boost her immune system in the winter. It wasn’t like from one dose to the next I noticed the difference. It was more once I reached the 24 hour mark without Ultracur. I started noticing aches, pains that had quieted. Could I have really pin pointed when they quieted. Probably not. It was like. oh hey, that was gone. Don’t worry there were other areas that were yelling. When it kicks in, it tends to be just as subtle. I know for me when I am not functioning my brain is constantly checking my body. NOW? Can we go do something now? Can we at least sit up? Can we stand? Once I am up and moving I tend to think less about my pain issues.

My routine has become I get up and take two. About thirty minutes later, my morning stiffness is noticeably less. I should note I also use Ginger,either in juiced form or in my Chai. Often two to three times a week I take a four mile walk. When I return from my walk. Two capsules and ginger. Most of the time thirty minutes later I can function again. Sometimes if I have really pushed myself it takes an hour.

At this point a little over a month after starting it, I have completely stopped taking aspirin. I only take Tylenol at night to help me sleep. For whatever reason Tylenol knocks me out. It is worth mentioning there is some minor risk taking aspirin and curcumin together. I never took them at the same time it was either one or the other. Until I tried this one, I had not found anything that would work at bedtime where I could stop using so much aspirin to help the muscle pain and the Tylenol to take the edge off the joint pain.

There have been some nights I have begun to question if I even need to take Ultracur at bedtime. I have skipped it several times and surprisingly had decent sleep.

If you missed the original product review you can read it here.

Please still contact Casey if you are interested. We continue to work together.