Doing only what you can

I know I've had this topic several times before, but I'm a slow learner so this is for me as much as anyone else.

There are days, sometimes several days in a row, when we just don't feel up to doing something that makes us happy when we do it.

It's okay to have to say no to seeing a friend or going to dinner. Even an event we said we would be at but at the time your arms hurt terribly, or your legs, or, worse, both.

Some people are understanding and sympathetic. They even care about how we are doing.

Some people believe we couldn't possibly have terrible pain "all of the time." I am learning not to accept what they say. In my mind I acknowledge what they said and I look for some good in it. Can't find the good? Move on. We have enough issues with people not believing us or that we are weak.

If I made a point here it's that we need to listen to our bodies. We need to be able say no and we need to change the negative comments to a positive thought.

We suffer a lot and we need to keep our life as absolutely positive as we can. 

Say affirmations. Be good to yourself. And, be okay saying no.

peace & love,

sunee

understanding

I read a comment and it was exactly what I have been thinking about all day- trying to get people who don't suffer from chronic pain to understand.


My thoughts on the subject were that it's true. How can they understand? Before I got sick I thought headaches were the worst pain imaginable (until I broke my nose).


Those of us with both an autoimmune disease and Fibromyalgia suffer from pain all over our bodies. Our joints hurt, we get numbness, we have pain in places we never thought would hurt.


I know that many people think we have a low pain threshold and we're over reacting. It's all in our heads. But we know how we feel.


I try not to associate with people who don't at least try to understand. We have enough problems without dealing with people who refuse to accept that we are suffering.


It may limit our social circle, however I feel that I'm going through enough crap that I'm better off without them.


We need to surround ourselves with people who care about how we feel- even if they don't fully understand how and why we feel how we do.


In order to stay positive, a very important part of our self-care, being around people who care about us. I vent to one friend who never questions me. She offers support and an open ear. I know I could count on her in an emergency.


If you have someone who you can talk to outside of your family that helps tremendously. Family members see it every single day. They live through the worst of it with you.


Support groups are good. They understand everything you're living through because they live through it too. Remember that they may be at different stages or experience the disease or Fibromyalgia differently, yet you'll be connected by virtue of your condition.


If there aren't support groups in your area, you can always start one. Meetup is a great way to start a group (www.meetup.com) and it will walk you through it. Or you can put up flyers at your doctor's office. Either way, be patient. People will eventually find your group (if they don't right a way.)


Location might be a little bit of a challenge. Try your local coffee houses and places like that. Many cater to groups from book clubs to people who meet for a number of reasons. 


My point is that most people don't get and probably never will. They don't live with a host of physical problems that we don't even understand sometimes. If they can't be sympathetic, move on.We don't need that negativity in our lives.


I hope you all have someone to vent to. Vent to me in the comments. I believe all the people that think we're crazy etcetera keep us from living our lives to our full potential.

My hope for you is a life full of loving, understanding people.


peace & love,
sunee

Reiki

I have three Reiki sessions so far and I am sincerely recommending it. Although, I must admit it may not be for everyone. You have to be willing and open.


Many of us with chronic pain carry a lot of emotional baggage. I have found that Reiki helps release that baggage to help not only left pain, but to feel better, more love, for ourselves.


Reiki may not cure my autoimmune disease or take all of pain away, but it will definitely help me be happier with who and what I am.


Reiki has already helped with depression and feelings of worthlessness. I feel like writing again (most days). I feel creative and my spirituality has been reignited.


I suffered terribly from feelings of worthlessness and depression. But every session I feel myself coming back out of the disease. 


I was a perky, energetic (okay, hyper) woman until Sjogren's and Fibro really hit me at 43. I was unstoppable. then out all ended.


Now I feel there are different creative paths for me and each session builds my confidence more.


It is a very positive and spiritual experience. 


I hope you all find something that brings back your vitality. (Not that I am Miss Super Vital Ray of Sunshine everyday, but I'm working on it.)


peace & love,
sunee

family problems are a pain

Those of us with chronic pain know that when there is stress it's difficult to control our pain. (It's difficult most of the time anyway.)


When there are major family problems I tend to get very stressed and therefore my pain increases exponentially. 


I don't know about others but I tend to take it all on and have trouble letting it go and letting certain things just work themselves out.


My advise is that we need to step back before jumping in headfirst. We can ease our discomfort by not stressing out before we even deal with anything.


Then it's all about letting go. We have to let outcomes be what they may. We also have to take care of ourselves or we can't deal with much of anything.


I only share this because I did it wrong.


peace and love,
sunee

letting go

Letting go has got to be one of the hardest things in the world. However, if we're to be happy, letting go is the most important thing we have to do.


Being ill we often feel sorry for being sick, sorry for the sadness it causes our loved ones and sorry for the inconveniences it causes everyone.


We can't take that on. We're already sick. If we get scared or overwhelmed by it all we need to acknowledge it then throw it away (unless it is something important to discuss). That may mean writing about it, talking to a spouse, a friend a loved one.


Letting it build up will keep us down. Worse, it will make our family sad to see us like that and then we will all be depressed.


So, I'm letting it all go. The fear of how my family feels. The fear of the future. The fear of the pain. The fear of if I'm living up to expectations.


Let's all let go and be free.


peace & love,
sunee

fall out

All I have to write about tonight is that having Sjogren's Syndrome and Fibromyalgia causes a lot of fall out.


It tears families apart. No one knows what to do. It scares and worries the children. You feel all your aches and symptoms and then maybe some sadness for putting them through this.


How are we to act around the children? Our spouses? How do bring back normalcy to our lives?


These are things that each family has to figure out due to their own dynamic, but it is the hardest thing I've had to deal with so far.


I wish I could take the fear and worry from my kids. That's what would make me feel better.


peace & love
sunee

just thinking about being myself

I am returning to writing about my experiences and my thoughts. 

I was just thinking that I'm not a doctor, though I see doctors more than my friends. Since we have found nothing that eases my pain and other symptoms (I'll get into in a bit) I tend to retain a lot of information.

I'll share information, but I feel uncomfortable delving into doctor realm. I'll list some books at the end.

So, I've been suffering terribly. The Fibro, the Sjogren's- all the pain and problems have increased dramatically. I'm on a ton of medication, so my stomach hurts a lot.

I have rashes. They're not just from Lupus. Some are just bumpy with no redness. My other "rash" is what I call toe rot. My toe nails look like they've got the worst case of fungus you've ever seen but it isn't a fungus. And, now I have a finger nail with it. Nothing clears it. And my hair is thinning so much. I used to have full curly hair and now it is so thin many of my barrettes are way too big. I won't go on. It'll bum me out.

Needless to say, I understand what you're all going through. 

I enjoy looking at what is positive in our lives, whether we work or not. I like writing about the little things that make me feel better, like herbal tea and a good book or drinking it on the patio.

I was listening to The Beatles and I realized it's true. All we need is LOVE. We need to love ourselves even though we aren't the person we though we would be. It's tough business.

Before I became "ill" I ran a huge Drama Department. I directed three plays a year and musicals with casts up to 65 students. We had the best time. My children participated. I wrote plays and we produced them.

After I left that job because I was in so much pain I went into a depression. Then I tried working at the continuation high school. I loved it like I loved Drama, but after six months I was in terrible shape. 

Yes, I lost who I thought I was, but if I love myself the way I am now it just makes it easier. Especially my family. I feel so bad when all I talk about what's bad. I am too blessed to be a poor me.

We all feel that way sometimes,  but there are people who will listen, let us vent. There are also support groups on Meetup. I'm in one in the South Bay.

Here are a few titles of books that provide better medical information than an ex-drama teacher/writer:

1. The Sjogren's Syndrome Survival Guide by Teri P. Rumph, PH.D. & Katherine Morland Hammit.

2. The Sjogren's Syndrome Handbook edited by Daniel J. Wallace M.D.

3.A Body Out of Balance by Ruth Fremes,M.A., and Nancy Carteron M.D. FACR

4. Making Sense of Fibromyalgia by Daniel J. Wallace M.D.,and Janice Brock Wallace

5. (my favorite, most helpful book) The Complete Idiot's Guide to Fibromyalgia by Lynne Matallana and Laurence A. Bradley, Ph.D

I hope that one of these books help. I know of several more. Mostly I hope you don't feel alone and you feel love.

peace & love,

sunee

More details part 1

I am going to write some information about Sjogren's Syndrome and a little about fibromyalgia. This information is based on my experience and the millions of questions I ask my rheumatologist (because I bring a list each visit).

Let's begin with Raynaud's Phenomenon. Have you looked at your feet and they're purple? Or white? Maybe your legs are blotchy? Generally it is the constriction of your blood vessels- and if they're blue it's the pooling of blood in the veins. sometimes it shows signs of vasculitis, but your rheumatologist will run tests if it looks worrisome.

You (and I) can have fevers, fatigue, reflux, achiness, muscle weakness, numbness and tingling, itchy skin (watch those rashes!), cracked skin, hives, mouth sores, Depression, hearing loss and nasal problems. (Just to name some problems.) it's mandatory to keep your doctor informed of all changes in your body. Also remember to keep skin hydrated and to mention any changes, (rashes etc) to your rheumatologist.

Pain is probably the worst problem I have had. My wrists, ankles, knees and elbows throb and ache in use or not. Muscle weakness is when you feel like jelly when you walk as far as you used to. Going up and down my stairs my legs don't feel strong enough to make it. I was told to exercise as much as I could each day. Many days, because I am in severe pain, I just walk around my house, taking the stairs a few times. You might be able to do a little more. I plan to start gentle yoga next week.

Pain is the monster of both conditions as far as I'm concerned. Well, I may feel differently when my mouth is too dry to eat and an eye lash made me feel that my eye has been stabbed. (If that happens a warm compress helps and Systane makes a gel that should help, and can be used every night.) That pain from the eye lash is often sharp and will stay around awhile.

Pain comes in many forms and levels. I try to journal my pain. I to use the 1-10 system the hospital does as well as describing the pain. Is it dull, sharp, stabbing, moving, burning, aching? Most pain related to fibro and Sjogren's responds well to heat. I am a huge fan of heating pads. I have several. If a warm hot tub or pool is available, take a short dip (but remember that hot water dries out skin), also for a lot of people a shower works. No magic product on the market helps. A rub down with some thick cream relaxes you, moisturizes your skin and takes the edge off the pain.

Relaxation is so crucial to lowering our pain levels- no matter what type of pain. You may have prescriptions for pain. If it hurts bad enough that you can't move easily, is making you have anxiety or just throbbing through your body, take the medication in the dose prescribed. Then try to relax with music or whatever works for you. Don't let it get to an excessive level because then the medication may not work.

Mouth sores make it harder to eat than just a dry mouth. Ask your dentist or rheumatologist how they want you to handle these. I get thrush, or yeast infections (yuck) in my mouth often and I have tablets to suck on and I stick to a soft diet. But I also get sores that are like chewed up skin. I stick to a liquid diet at those times. Ask your doctor or dentist what to do of you get mouth sores or your mouth turns white. What I do may not be how they would handle it.

By the way, I was writing about eye drops and blurry vision yesterday. Part of the blurriness is from certain medications, especially DMARDs. If you also have fibro than you should know that Lyrica can cause blurred vision. I have terrible vision anyway, since I take those medications I don't drive at night and as needed during the day.

Nasal problems can occur as well. I get the dry sinus infections that hurt terribly. You might get other problems, including bloody noses. It is recommended that all Sjogren's patient's use humidifiers throughout their homes to help keep moisture flowing. Try to keep them in the rooms you're in the most.

Many of us with fibro also have odd numbness and tingling in our hands and feet. Please tell your rheumatologist about that. It can be a variety of things. It's annoying, scary, uncomfortable and kind of strange, but so are these conditions. I get numbness and cramps in my feet and tingling in my hands. It generally happens when my wrists are screaming in pain and my arms have a moving burning pain. Pay attention to when (if) it happens to you. Write it down and see if it's the same every time. These are things to tell your rheumatologist.

I have had MRIs, CT Scans, been to the neurologist, so I understand. It's scary and confusing, and you often don't get the results quickly. These have to be done because they may provide important information. Anything that can help us is a good thing.

Falling into depression from all the doctors, medications, your role in the family and how much pain you're in is common, but still serious. I see a psychiatrist, some people see counselors. Support groups help. But I think it's very important to tell either your primary care doctor or rheumatologist if it is causing you to feel sadness or anxiety most of the time. Don't let your illness define you. And get help. I did.

I just wrote about a few things that were not as basic. I'm open to suggestions. I'm not a doctor, just someone suffering from Sjogren's and Fibromyalgia (who happens to be neurotic with adult ADHD).

I hope something I wrote helps.

peace & love,
sunee


- Posted using BlogPress from my iPad

Location:Vanderbilt Ln,Redondo Beach,United States

a little about Sjogren's

There are so many symptoms associated with autoimmune diseases besides pain, today I thought I'd focus on some of those.


Those of us with Sjogren's make no saliva. Try to find mints or gum with Xylitol. The brand Spry even makes a tooth paste gum and mints. It's important to sip a lot of water. I can't emphasize how important proper dental care. It is absolutely imperative. Dry mouths cause tooth decay and a lot of problems that may make us lose our teeth.


Dry eyes make it hard to see because of blurriness and sensitivity to light. Use Sterile eye drops in the vials and use strong sunglasses. I prefer Systane. It's easy to use vials make your eyes feel great. Only vials of eye drops are truly steril. See your Eye professionals regularly.


I also suggest seeing your eye doctor to either check your current prescription (mine changed dramatically) and if needed, get something stronger. I'm going to get Transitions Lenses on my new pair so that I won't have so much trouble with light. 


Thick body creams are necessary because our skin will dry up. 
Lotions are not enough. Keep showers to a tepid level. Hot water dries skin out. Eucerin, Nivea, and Blue-Emu work exceptionally well. Blue-Emu helps with muscle pain as well.


Look out for rashes. They may indicate other problems. Whether the rash is tiny, on your face, or, what I have, on your nails, get it checked out.


Take fatigue and pain seriously. You need to take care of yourself in order to be there for other. I'm not as good at that as I should be. As a result I have more pain.


Autoimmune diseases cause pain in our joints. Be aware of where and what type of pain you have so that you can tell your rheumatologist. 


This is a short list for a start. It's just the beginning. I'll delve deeper. But watch those rashes!


peace & love,
sunee

Pain and plans

When we make plans generally our intention is to keep them. Everyone, those of us with chronic pain and other symptoms, and those of us without such conditions.

I remember trying to get out of plans when I was younger and didn't suffer from severe pain. Sometimes we just don't want to do or go to whatever it is.

Then there are the times I really want to keep my plans and I can't. Pain wins. It is frustrating and makes me feel isolated. I don't mean mild or dull pain. I mean pain that makes me edgy and takes over my whole body and I really can't go anywhere. I get like that often.

That makes me feel bad and sad. Bad because I wanted to be with those I had plans with and sad that I have such severe pain. I also feel angry. (Which, of course, makes the pain worse.)

The problem is that many of us feel guilty when we have to cancel. Guilt isn't even an emotion so we need to drop that right away.

Whether we have the flu or a conflict or fibro and/or an autoimmune disease it is generally hard to be a no show. We might feel we missed out or let someone down.

Pain causes a lot of problems. We are, "I'll do my best to be there." Maybe we used to be "Yes" people. The ones you could always count on. I have a hard time letting go of the "Yes" mentality because I have to miss out on a lot of things.

Instead of feeling sorry for ourselves we need to adjust our thinking and attitudes to, "I'm doing the best I can."

Let's be happy with what we can do and let go of what we can't. We don't deserve to feel bad. We have enough to worry about.

peace & love,
sunee





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everyday is a good day

It is so easy to feel stuck, frustrated, pissed off, and, unfortunately, sorry for ourselves.


My new approach to each day is that it's a good day- even with pain.


We are blessed with each day, even if it isn't pain and problem free. We can start by making our children and spouse a priority without taking about our pain. Find out what's happening with them. Let them be the center of attention.


Those of us with with chronic pain conditions need some positive things in our lives. We're responsible for finding things that make us feel good. Feeling positive comes from our mind and than through actions.


However, due to the extreme pain and seriously uncomfortable problems that go along with our conditions, we may need to put the positive act first and let the positive feelings will follow.


What makes you feel good? It's important to figure that out so that you don't just suffer. It's a great distraction and might be something that helps someone.


Everyday is another chance to enjoy life and the our loved ones. It's up to us how that goes.


So, enjoy yourself and your loved ones today. Hopefully it will become habit.


peace & love,
sunee

crazy pain

I have flare ups like everybody else with Fibromyalgia and autoimmune diseases, but sometimes the pain is so bad I feel like I'm losing my mind.


I have to say that I am not having a flare up. I have severe pain everyday. Somedays it's worse than others. However, it's at the point where I can barely do anything, let alone go anywhere.


A short trip to the store might leave me exhausted and bedridden with heating pads for the rest of the day. The same with a trip to the doctor.


The reason I'm telling you all of this about me is for all of you that can relate. You're not crazy. The pain is real. And if you have Sjogren's Syndrome you have all of the eye, mouth and all sorts of other problems besides terrible joint pain.


Today I handled the severe "flare up" of the day by trying to organize my desk. I couldn't sit still because my legs were having a strange pain that made them need to move. So I went downstairs for no reason, back up stairs and then I did it again. By then I had made the pain worse and I needed to be still (with my heating pads).


The positive thing I did next was calling a friend. I talked a little about my pain, but I listened to her problems and it calmed me down. After the call I wasn't acting so crazy. I took care of myself.


So, all I wanted to express today is that pain can get so bad we feel crazy. Obviously it isn't good to act crazy. We aren't crazy. We just have extraordinary levels of pain. It's not in our heads and I hope no one feels that maybe some of the pain is in his/her head. It's real. Very real.


When the pain gets crazy try to do something calming. Deep breaths, journaling, talking to someone who empathizes, taking a warm bath.


We're not crazy- even if the pain makes us act that sometimes.


peace & love,
sunee

reaching out

When I'm home all day (or even if you work) I tend to isolate quite a bit. I don't want to have nothing to say but what hurts or what problems I'm having. It's what is predominately on my mind.


Yet, I know that I am more than that. I am a wife, mother and daughter. I have a great sense of humor. The Beatles and Scrabble.  I love to read. I'm a foodie. I write plays and short stories I'm trying to publish. I'm even trying to start a novel. 


That's just a short introduction. What defines you besides your illness(es)? What do you have to offer to friendships and support groups? 


Defining ourselves becomes extremely important when we're suffering daily. We tend to talk about it all day. I agree that there are times when our pain takes top priority. But, there are times to just be who we are.


Depression and fear kept me from reaching out to friends. I might have had some nice visits or friends coming over for tea if I made the effort to call them up and plan something.


Reaching out can be scary. Maybe joining a support group might be a good start for you. And, you can text your friend, you don't have to call if you feel intimidated. I know I felt that way and sent a text to my friend inviting her for tea.


Figure out what defines you that has nothing to do with your doctors. Try to enjoy some of that. That should give you the confidence to reach out.


I highly recommend joining a support group. If you're not feeling the first one, try another.


Let's redefine ourselves.


peace & love,
sunee

gratitude list

I wanted to explain a little more about our Never Ending Gratitude List.


First of all, you only have to write things your grateful for when you feel them. If you tend to be negative most of the time you can make it a habit to write at least one thing on your list.


Second, you're not comparing your list to others, so go ahead and write that your favorite show came on, that your dog(s) were good, that you went to the beach (lake or river), that you finished reading a book, that someone else went to the market and so on.


I wrote that I was grateful for my husband (multiple times) for being so helpful, I put my children on my list because I'm grateful for them everyday. I write one word entries and sentences. I hate getting mammograms so instead of complaining I wrote that I was grateful to get one because there are so many women who can't.


This list should be however you want it. It's a great reminder on those bad days. Also, by writing in the book it allows us to think positively and as a result, become happier.


It shouldn't be something to fret over. If you can't think of anything, by write something as simple as I'm grateful I'm awake and alive today.


I know many of us feel so much pain daily it becomes hard to be grateful, but this is our life, so maybe you can think of something your grateful for.


I hope you get the hang of it.


peace & love,
sunee

being grateful

Being grateful is difficult if you're always in pain or dealing with thinning hair or strange skin problems from an illness. 


Let's face it, being grateful is difficult without any illness at all. We feel frustrated, passed over or given difficult challenges to live with.


How do we feel grateful and remember to be grateful each and everyday.


Well, I heard something that  I'm "borrowing" because I believe it will work for myself and many others.


Instead of writing down a few things we're grateful for now and putting it somewhere you'll forget about and then find under some bills later.


What if we started a Never Ending Gratitude List. This might be something to keep in a notebook or the journal you don't know what to do with.


I started by writing three things I was grateful for yesterday in a beautiful journal I bought but wrote nothing in it yet.


Today I may only find two things I'm grateful for, or maybe I'll have five things.


If we do this everyday- and, of course we're only human and we might skip a day here and there- then when we're feeling down or ungrateful we have our Never Ending Gratitude List to read and reflect on. 


This might be all we need to feel a little better. It's almost impossible to be grateful and feel sorry for yourself at the same time.


Gratitude keeps us smiling and feeling that everything will work out as it should.


You don't need a fancy journal. A steno pad, a regular notebook, printer paper stapled together will all work for your list. If your creative you can make a beautiful cover for it. But do it, creative or not.


I'm grateful that I get to share this with you. 


peace & love,
sunee

letting go

Free yourself. Let go. Old issues and resentments, things we can't control. Just let it go. Free your mind, spirit and heart.


Many of us have family issues or life problems that we try to fix, we think about often and we probably stress out over whatever it is.


All that built up stress can increase our pain more than we realize. That tightness in your shoulders and neck, your hips, your whole body if you're like me.


When we let go of what we cannot control we release ourselves from unneeded stress. Generally we stress over people, places and things we have no control over no matter how hard we tried.


We need to let that go. Give it to whatever spiritual being you believe in, and if you don't believe in any just give it to the sky. 


Letting go isn't as easy as I may be making it sound. But if we try everyday to let go of the issues, resentments and problems that weigh us down and cause more pain, we will begin to feel better.


I get quiet and I picture the issue leaving me. I feel the resentment dissolve. I forgive others and I forgive myself. I don't say it out loud, I visualize these things leaving and dissolving. I am a very visual person.


Maybe you need to write down what you want to let go of. After you write your list of what needs to be let go of, maybe get rid of the paper as a way of sealing the fact that you're letting them go. You can rip up the paper and flush it. You can put it in the fireplace or BBQ and set it on fire.


The point is we need to let go. We ned to be free of things that add to our pain- physical and emotional. Emotional pain can cause us serious pain.


There are so many ways to let go. Prayer, meditation, writing everything down and giving it to whatever spiritual being we believe in. 


We have enough physical problems. If we can let go of some old resentments or issues weighing us down, we can relieve ourselves of at least some pain. Maybe migraines will lessen.  Maybe our joints won't ache as badly.


Let go. We don't need any negativity in our lives. We suffer enough.


peace & love,
sunee

Happiness

How in the world do you find happiness when you're in pain all of the time?

It's hard enough not to have pity parties let alone be happy, right?

Wrong! I am a happy person by nature, but I've fallen into dunks over how little I can do now. Last night I cried over the severity of my pain. But I woke today (with pretty bad pain) in a great mood.

I truly believe it's the little things that make us happy. Like singing Beatles songs to my dogs as a fun way to start my day. (Besides the fact that they're the only ones who enjoy my singing.)

We may have had to give up activities we truly loved, but it's up to us to find new ones. Or, bring out ones we've forgotten about. I brought out puzzles because there is a frustration that leads to great satisfaction when we've completed one. and, I only worked on it in 20 minute increments so I wouldn't add to the pain in my back and neck.

That's just one small example. Because I believe that happiness is a choice it's up to me to a) not feel sorry for myself, and b) do the things that make me smile and bring me joy.

We can make accommodations for certain activities, such as the practice of Yoga or a low intensity sport (with doctor's approval).

It's half attitude and half doing. Just sitting around in pain and miserable wondering why we aren't happy isn't going to help matters.

Make a "happy list" as corny as that sounds. Put a note on your bathroom mirror reminding yourself to enjoy the day. Color, knit or crochet, read, journal, call a good friend, bake cookies...

One thing that has kept me smiling is fixing myself up everyday. Well, almost everyday. No living in sweats with hair in a mess. I don't mean party attire, just nice enough to see people. May invite people over for tea, then you'll already be dressed.

Make the choice to be happy. You won't regret it.

peace & love,
sunee




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Location:Home

pain and panic

Many times when we have pain we panic. This is true for those of us with chronic pain conditions or not. 


Pain is scary. Why am I hurting? Could it be serious? What should I do?


I'm not referring to accidents like when I broke my nose. I knew exactly why I was hurting- but it was still scary.


I'm referring to the where did this come from pain. Rapid onset pain. And, if you don't have a chronic pain condition I would advise you get to the doctor. Random pain can be serious. Don't be stubborn.


So, when we get this pain it isn't the time to get worked up and Oh my gosh what do I do? Should I do this, take that, use this, et cetera. It's hard, I know from experience, but we need to remain as calm as possible.


For those of us with pain most of the time a new or worse pain can lead to panic. I get terrible anxiety if I don't slow down. Maybe get a family member to help if you're immobilized or feel you can't move. Call out for help in a calm manner. We don't want everyone freaking out.


Acknowledge the pain and the fear and then figure out what to do next. Do you have medication? Do you have a routine for when pain strikes? 


I always say take deep breaths. It will clear your mind of all the mind chatter, relax your body and allow you to determine what is the best way to handle this pain.


I still panic and have anxiety when pain worsens or won't stop for even a few minutes. Honestly, that's leading to more pain or worsening the pain I've got because I'm freaking out (a little, sometimes a lot). When I finally breathe deeply I am much better prepared to deal with it. And, I don't have to scare my family.


Dealing with pain everyday is hard. We just need a toolbox of tricks (so to speak) to handle the really bad times. Music helps me. Breathing deeply helps me. My dogs help me and so on.


Try not to panic. I would hate to think of us feeling even worse. We are stronger than we even know.


May you be pain free.


peace & love,
sunee

STRESS can make pain worse

Life Happens. Good things, day-to-day things and bad things happen all the time.


Bad things are what gets us. Chronic pain conditions or not, stress can make us sick. I don't mean the little things that stress us out but the big, bad, ugly things.


These things generally come out of the blue, so there's no preparing. But even if we know they're coming at some point we may not know when everything is going to explode and we're left with the fallout. 


If we're suffering from chronic pain and other disorders stress can disable us completely. That's why it's so important to be able to deal with stress and lessen the impact on our bodies and minds.


First of all, we can't fix everything at once. We need to make sure we take care of ourselves properly or we're no help to anyone or anything.


That seems difficult, especially if you are extremely sensitive and emotional like I am. So slow down. Do you need to do breathing exercises before you can decide what you need to do for yourself? Maybe some herbal tea and writing in a journal may help. 


Once we're calm we need to do what's best for our bodies. We all have routines for when the pain is extreme. Do we need to take a warm bath, meditate, take prescribed medication for anxiety and/or pain, rest with heating pads or maybe eat something?


These aren't selfish things. If we're completely immobilized by what's going on, we're just adding to the problem. When the poo hits the fan, we don't need to be stuck in bed with severe pain if we can help it.


That doesn't mean it won't cause us pain. I'm going through a seriously stressful situation and I will take my medication because it has left me with pain so bad I'm shaking. If I stay like this than I'm just making matters worse.


Second, and just as important, we don't need to fix it all alone. Allow people to help. We aren't as strong as some of us- like myself- think we are. If we have to, ask for help. Taking some of the pressure and stress off ourselves might help lower our pain level. 


Sometimes adrenaline will get us moving and trying to handle the situation and we don't even feel pain. Yet. We will. That's why we need to slow down and take care of ourselves first.


Third, and last, nothing needs to be completely handled right away. Of course, if we have to send somebody away in an ambulance that is a right away situation in which we ask for help and support. So unless that happens or someone or something is on fire, we have time to get our heads and bodies together to handle the problem.


Stress cannot be avoided, but we can take a peaceful approach to dealing with the ugly things in life. Getting worked up, chronic pain or not, will give us headaches, stomach problems or worse.


We can't help how we feel, but if we use the tools available to us, we can get through anything.


Slow down and be good to yourself, today and always.


peace & love,
sunee

change it up

Sometimes we need to change our routine up just a bit to feel a little better.


Many of us have a routine that rarely differs and we feel down, depressed and riddled with pain.


It's not that we need to completely change what we do. Rearrange your day. Add in a short walk. Do chores at a different time during the day. If you work, do what you can to change when you do routine. At breaks or lunch stretch or listen to music that puts you in a good mood.


Actually, all of us should listen to music every single day. It moves us. Get up and dance. Enjoy the creativity of musicians while you do chores. Try listening early in the day and when you feel burnt out and have a lot of pain.


Eat lunch, or even breakfast, outside in the backyard, or patio. Enjoy life the peacefulness of the yard,or life going by if that's your view, instead of sitting at a table looking at nothing.


If you stay home, try to wear something other than sweats everyday. Your mood will be lifted if you feel cuter. It works for me.


The best thing you can do for yourself is just mix it up a bit. It's not a big stressful project. Just add some music and a few changes to your day. The chores can wait until after you do something that makes you smile.


I'll be mixing it up. I hope you join me.


peace and love,
sunee

Good days

Although we may face many obstacles daily, everyday can be a good day.


How do I say this with the ridiculous amount of pain I have daily? 


I appreciate everyday. I may not be able to do everything/anything I want to, but I can be a loving example of the goodness of life.


I get to be home. I see my children a lot (which I enjoy). I spend time with my dogs. I write, blog and read. When I feel well I cook a pretty nice dinner. I try to practice yoga when I feel I can.


We all have the ability to change that "bad day" to a better day. It's not always easy and we may need take breaths,and then, one thing at a time change what's bad. And first what we all need to change our attitude. The big picture of the day may not look quite as bad.


A change of attitude helps us do what need to do in order to change the course of our day. 


Running late? Slow down and safely get where you're going. It will still be there when you get there. Everything that needs to happen will. We just need to take it easy and do one thing at a time. I know I cannot do a million things at once or in one day. 


When I get frustrated because I don't feel well enough to do what's on my never ending list, I need to just take a moment and some deep breaths and figure out what I can do.


Life is so fast-paced and busy these days and no matter what our physical condition is we need to slow down. See what's really happening. Enjoy what we're doing. Nothing is more important than appreciating all aspects of our lives.


Let's try to make all days good days. Smiling helps.


peace and love,
sunee

the problem with pain

The problem with pain seems obvious- it hurts. For those of that have chronic pain disorders pain is at a whole new level of hurt.


If you're suffering try a hot bath. Add some bath salts or lavender scented bubbles to calm our bodies down. If not, heating pads are wonderful. And take some good deep breaths to try to relax. If you have creams and ointments, us them. Another thing that works for me is to watch TV or a movie I love. I even have episodes of Top Chef on my iPad. It distracts from the pain.


However, the real problem with pain is that it keeps you from doing what you want to do. You can't do anything physical, so chores are out and even hobbies that require lifting etc


Pain also makes us think differently. I know my pain gets to the point where my head spins and I panic. I can't always even read a book or magazine or blogs.


Another problem with pain is that interferes with our relationships. We are stuck resting with heating pads while our friends go out and do fun things. I can't even go to the mall with my children or go out with my husband. 


Chronic, severe pain can make us lonely and unmotivated. I'm home full time and I love to write, yet I barely write anything. That's why I love my blog. Maybe you play the guitar or knit or paint but you "don't" feel like it. 


Pain sucks. But we need to avoid letting it suck the life out of us. It's up to us to find something to do when we feel really bad. Reading or researching something on the computer. Play games online (I love word games).


It is not easy to live with chronic pain. We are responsible for not losing ourselves because of it.


Stay active.


peace and love,
sunee

Something new

For those of us with chronic pain life becomes frustrating. Many people, like me, haven't found any relief. It's aggravating and makes it hard to enjoy our lives. So, rather than be passive, I am trying alternative health care along with my traditional health care.

I tried another form of alternate health care. I suffer enough to try everything, so with an extremely open mind I tried Reiki. Here's how it went:

After my several months of acupuncture I had no idea what to expect, except for one thing- I knew there were no needles. I stopped the acupuncture for several reasons, none of which was the needles. I got used to them, even on my face. And it did help in some areas.

Reiki is a gentle therapy. It works with the energy in your body and moves it to help alleviate pain. It also works with emotional pain as well. Honestly, Reiki is far different than anything I've experienced. It's not massage and it's not therapy like counseling (though it can release pent up emotions).

Reiki allowed me to relax, something I have extreme trouble doing. My reiki healer played spiritual music, not from a particular religion just relaxing and calming. I was on a massage table with a pillow and bolster under my knees.

My Reiki healer explained everything to me. I don't know everything she did because my eyes were closed and I was very relaxed. She held parts of my body such as my head or my arm. But when she held my knee, a place that was throbbing, I felt the pain lighten and lighten until it was almost gone.

I felt joyous throughout the experience and when we were done I was so relaxed I felt a like jelly.

I'm not suggesting anyone go out and try Reiki. I am just sharing my experience. Nothing has helped me feel better, so why not try something I've only heard good things about? I don't know what the long term effects will be, but I'm having another appointment next week.

I feel the need to take an active role in my health care, in finding relief. I'll share my experiences along the way.

May you find some relief and feel joyous.

peace & love,
sunee

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