Clothing

Corsets: for probably every woman in America the thought of sinching something around your ribcage until you can hardly breath would be unimaginable. This week I was watching "The Young Victoria" (good movie by the way. I was enamoured by the excellent costumes and beautiful music. In one scene the young princess is getting dressed - layer upon layer of fabric and of course the tight fitting corset. I have heard horror stories of how women would often pass out because their corset was so tight they weren't getting enough oxygen to keep their brain functioning, or how others would have broken or deformed ribs because of years of manipulating their bone structure into a smaller corset to create a tiny waist. CRAZY!!!!

The demands of fashion change over the years and continents, but one thing remains: women (and men) will go to great lengths to look "good", and often cause pain on themselves in the name of beauty. "Pain is the price of Beauty" some may say.

This brings me to another pain managment tool: COMFORTABLE clothes! For those of us in constant pain, choosing to go against the mentality of pain for beauty is important. When I am hurting the last thing I need is to cause more pain ad discomfort by wearing resrictive or uncomfortable clothes! Sometimes I find that I am super irritated with what I am wearing only to realize later that what really was happening was my pain level was rising and I didn't even know it - all I knew was that I hated my clothes! It may mean taking the time to go through your closet and toss out items that are uncomfortable, or finding ways to look nice without the price of pain. I am still learning that certain clothing items just don't work with my pain level, and that is ok. And there are many tricks that I am learning to help look my best when going out - without looking like I am always in my PJs! One option is to wear tunic length tops or even a short dress over maernity jeans because then the waistline on the jeans won't hurt me. The key is to find out what types of clothing are most comfortable for you and then find ways to look presentable in them. But when I am at home - my PJs are almost always on, because nothing beats the comfort of cozy flannel Pjs!

just wrote a whole blog and this site deleated it - so i guess i will wait until tomorrow to share --- so frustrating!

Do something!

Sometimes I feel like my pain takes control of me, determining everything that I can or cannot do. I think that one of the most important pain managment tools is fighting against the feeling of helpessness in regard to our pain. Even on my worst days if I can focus my thoughts on one thing that I should o to be productive and if I can just do that one thing, it helps my pain not feel so much like the big bad monster who is controling me. When I am able to do something that feels productive (and I am constantly re-evaluatng what a productive thing is for me - which may look much different than it does to someone without physical pain and disability) I feel better. It seems that just in doing that little thing I feel much better about everything. I believe that it can actually help the pain level decrease! One days that productive thing is just writing an encouraging note to someone else in pain, or making my bed, or even getting out of bed and taking a shower ... but whatever it is it can help my focus get off on my pain and onto something else!

Take a deep Beath

Breathing. I think sometimes especially in times of deep pain you can forget to breath and that only makes it worse. Sometimes the best pain managment tool is just to step back and take a deep deep breath. Women who have gone through the pain of childbirth know that focus on breathing can get you through a lot of unimmaginable pain. Breathing deep can help the body relax, get the oxygen that is needed to keep going and just create a pause in the pain. When the pain is too bad to breath deeply breathing ryhmicly can be very useful. I think it is because breathing rythmicly helps keep your mind on something other than the pain. I also find that anything rythic - rocking while holding an exercise ball, moving my foot ... anything that keeps my mind off the pain is very helpful.

I would love to know what you do to help with your pain - specific tools that are helping you day to day ...

A Good Movie!

Some people will just laugh when I say this: but a good movie or a good TV show is very good pain managment at times. There are times when if I wasn't able to have something to watch it would be hard for me to handle the pain I am in. I remember back when I was in college and living at home, that there were nights when I just couldn't sleep because I had to breath through the agonizing pain that I was having ... I thought I would go crazy and being alone in the room at night feeling so bad I just didn't think I could live through it. My wonderful momma would get a Disney movie and put it in for me and that would make me relax and often I would fall to sleep watching Cinderella or Fox and the Hound.

There are so many horrible movies and TV shows that have no redeeming value - but if you choose good movies and shows it can be a very helpful tool ...

Holding a Baby

I just asked my husband what a good pain managment tool that I use to help with my pain - and he said, "holding babies". This made me laugh (inside so as not to hurt his feelings), but the I realized that he has a very valid point. I adore babies. There is nothing on earth like the feeling of a newborn baby sleeping on my chest - his tiny hand grasping my shirt, the smell of heaven lingering on his soft hair. I can hold a sleeping baby for hours, and I feel as if I were in heaven. There is something about babies and small children that seem to make my pain ease and make me able to do things that I could never do before. If a baby or child needs me to hold them, I suddenly have the energy I need (to a point!), even on some of my very bad days I can suddenly rally my strength (which I didn't think I had) to talk to or play with my neices or nephews. I was in the hospital last month, very weak and in a great deal of pain. When my nephews came to visit I was suddenly more awake and I did whatever I could to try and make them feel at home and not afriad of all the tubes coming out of me and the strange hospital room. By the end of their visit, my 2 years old nephew (who had been very afraid when he came into the room) was sitting in my arms on the hospital bed, eating ice chips with me and touching my IV with excitment, and talking and laughing with me. I had been in a drugged slumber before he came into the room. Maybe it's my mother's instincts growing, but I think that the need and trust that a baby or small child puts in me makes me rally all my energy to get through and be the best that I can be. A baby or tiny child doesn't know that I am sick. They see me and love me and I think because they don't see my pain I am more inspired and encouraged to manage it better. Because they need me to be strong I am able to be. They believe that I am invincible and a hero and this makes me believe it for a while. Their magic passes on to me.

It will be 3 years before we'll be able to begin adopting babies of our own (Lord willing). But I believe that even though it will be extreamly difficult at times to have to raise children while being in pain (I will probably need a nanny or some kind of help) it will be one of the best pain managment tools that I could ever have. It will also have moments of causing my pain to flair if I am not careful. It will take a lot of work and discipline to know how to be super mom without burning out - but with God's help, and the magic of babies - I think I will be able to be a good momma.

unconditional love

People who accept you the way you are. I am learning that people like this are rare (especially when you are different than what the world you live in calls "normal") and also that people who love and accept who you are are a GREAT pain managment tool. Being rejected, or scoffed at, or excluded .. all of these things make it harder to manage and accept the pain you have. I know that I need to work more on not caring so much what others think of me, but I can testify that when others make me feel stupid for the pain I am in, I find that I suddenly can't handle the pain I am in, I feel angry at my pain, and I feel useless and unfit to be in a world that doesn't accept me. The power that we as fellow humans have over other humans is great indeed. The way any of us treats another person can have a huge impact on the way they feel and this can affect the way they handle things like pain. I want to be the kind of person always who loves and accepts those who are around me, even if they are different or unpopular or disabled in any way. I know what it feels like to be on the other side wanting to be loved and accepted so badly, but finding myself alone.

What do I do in those times when people have failed to accept me? I turn to the One who always accepts me and doesn't care if i am different or in pain or not in the "In" crowd. He is always there, and even if the words and actions of those I long to accept me cause tears, my God will always take me into His great arms and let me feel His unending, unconditional love. That love is the best pain managment tool of all.

Timing

Tonight I am reminded of a pain managment tool that kind of ties them all together. Timing. I am trying to learn the balance of when to use which tools and that if I time things right it can help a lot. For example, I should have used icy hot two hours ago when I started to feel a lot of pain, but I got distracted and now I am not even sure that icy hot will do the trick. I may need to take a bath, take extra pain meds AND icy hot. Using the tools before the pain gets on top of you is KEY to being in control of your pain. Learn the signs that your body gives you to tell you that you need to use tools: sometimes I feel super tired before I even notice that my pain is really bad - it's like the tiredness is the sign warning me that I should slow down and rest or use other tools to help my body cope with the pain before it become unbearable.

This tool takes a lot of discipline and I am trying to be better ... sooo off he computer for me and time to take a dose of a few tools ...

Fun Memories

Today (well, technically yesterday since it is after midnight) I went to the zoo and enjoyed watching my little nephews see lots animals for the first time. It was one of their 2nd birthdays, so we had a lot of fun. But one of the most fun parts was just at the end when it suddenly began to rain (like it hardly ever rains here - super hard like in Africa!) .... my husband wanted me to run with him to find the tropical forest house - I didn't want to at first, but finally I gave it and he took my hand and ran with me through the rain - we began laughing and the stopped and kissed while the rain ran down our faces. A memory I am sure I will remember into eternity. Moments like these are sometimes left behind when we are in times of geat pain, but a very important pain managment tool (as I have said before) is happy thoughts. The art of taking ordinary moments and making them magical is an art that I want to possess ever day of my life. Not allowing little things and moments slip by without sharing them with those we love. A simple kiss, a laugh, a hug, a conversation, a cup of tea drank outside under the stars, a swing on a swing, holding a baby .... these are the kinds of things that make life so beautiful. Sometimes I find that in pain I get stuck in a rutein - I know what I can do safely and I give up too easily. I often tell my husband that I can't do something when I probably could - maybe would suffer a little for it later (like I am now with pain and unable to sleep) - but what I miss out on when sacrifice those tiny moments! I know that I can't do everything that I would love to do - some things I never will be able to do. But there are many things that I can do that are spontanious and don't put me in any real danger as far as my health goes. I would rather have the beautiful memories to help me through the times of pain, than have a little less pain but no memories to fall back on when I need them!

Enjoy the moments today - tell me what joy you found in the gift of the moment.

the right medication

I have been on and off so many different pain medications over the last 15 years, between surgeries and everyday pain I have almost tried them all I think! Well, probably not , but it feels like it. I have always been super afraid of the use of drugs for my pain because my pain is chronic, and I was afraid of becoming addicted. Each person has different addictive personalities or not, my doctors say that I am definately not at risk, in fact they usually have to talk me into taking medication on a regular basis.

At this point I am finally on something that is slow-release and so it is always in my system and my pain is much more under control than it is off this medication. I still fight against it, but I am coming to realize that maybe I need to be on something full time. No, it isn't the best answer, or something that I am happy about - but its the way it is. Being on this medication all the time actually helps me not have to take stronger medications when the pain is super bad - because I never let the pain get too out of control.

I am not saying that each of you needs to or even should be on pain medicatin. It is a very dangerous thing that your doctor and you need to decide together. What I am saying is that you need to become informed about your options and don't just settle for something that gives you bad side effects or makes you so loopy that you can't live your life. Find out what works for you. Most hospitals do pain managment classes and these are very helpful as they often go through the different types of pain medications and help you understand what might work for your specific type of pain.

Sleep

Last week my husband and I were staying at a friend's house taking care of their baby goat and dogs ... after 3 nights of hardly any sleep I noticed that I was a basketcase. I couldnt handle the pain I was having, and was crying at the drop of a hat. This brings me to the pain managment tool of the day: SLEEP. It has taken me a long time to understand that I need a lot more sleep than someone who doesn't have the kind of pain I have. I think being in pain affects how well we sleep - and even when we are sleeping it isn't as deep as one who isn't in pain, so we need more of it to get the same amount of rest. Pls we need a lot more sleep just to help our bodies handle the pain we endure while we are awake. I used to feel so embaraced at my need for 10 hours plus a nap ... but I am learning that everyone is different, and that if that is the sleep I need to be able to function while I am awake then there is nothing to be ashamed about!
Find out what amount of sleep your body needs and also be willing to allow for change. Some nights I don't get to sleep until 3 am and I know that the next day my pain will be greater and I will need more couch time than if I got to sleep at 10. Be forgiving and if you are the spouce of someone in chronic pain allow for them to feel the freedom to sleep.

Another area that this affects is in marriage or when sharing a room with someone. Before we even got married my husband and I talked about my sleep problems and that we would have to be prepared for me to sleep in a different room when I am really sick. My moaning or crying in my sleep (which is common) is something that my husband wants to be able to endure (and he does a great job of putting up with a lot) but sometimes I need to have the grace to go sloeep in the guest room or on the couch when I know that I am in too much pain for him to get a good night sleep. I need to respect his sleep and be humble enough to give up sleeping in our bed for his benefit at times.

Here are some things that help me get the best sleep possible:
1. take medications 1/2 hour before I want to go to sleep - this helps relax my body and control pain so tha I can get to sleep faster
2. have a glass of water and medication, chap stick, inhalers everything that i might need right by my bed so that i don't have to get up at night when it is time for mediation etc.
3. read in bed - this helps me relax right before i go to sleep
4. pray with my husband right before we go to sleep
5. make sure that I have done things that I might need to have done first thing in the morning so that if i can't sleep well I won't feel pressure to get up before i am ready

Happy dreams!

Being Believed

My husband and I just got back from a visit to my primary care doctor. We were going over that latest tests which showed (by ultrasound) swelling and inflamation around my back of my heart. I have had undiagnosed chest pain for 5 years and have been to the ER many times with struggle to breath and been to specilist after specilist. Yesterday the new cardiologist that I have been seeing called me and told me that the reason this didn't show up on tests in the past is that it is hiding at the back of my heart and is hard to see on tests. But because of a good technologist and doctor with trained eye I now have a confirmed diagnosis! My primary care doctor said that some of the doctors from the hospital and offices here where I live had a meeting and my name came up as a possible case of phychosomatic (which basically means you are crazy and your sickness is all in your head) because none of them could find out what caused the chest pain (and I have other things going on as well). She told me that when they said that she stood up for me and said that she didn't believe that I was crazy but that I have something hard to diagnose. She belived in me when no one else did.

This month we've been talking about pain managment tools and the tool of being believed in is very powerful! Just knowing that someone believed you and how you are feeling even when others are questioning it is so comforting. It makes you feel less alone. My husband always has believed me and in how I feel and the pain I am having. He is such a comfort to me in my pain. If you have a doctor, spouce, friend, mentor, parent, sister, brother .. anyone who truely believes in you hold onto them with all you have. They may actually be your biggest tool (next to God Himself) to help you manage the pain that you have. If you are the friend, doctor, spouce... of someone who confusing or undiagnosed (or even diagnosed pain that is hard to understand) do all that you can to believe and help that person. I know that there are real cases of phychosomatic or other mental disorders affecting health and pain, and if you know someome like that do your best to help them too ... being that person that can be trusted and turned to when no one else is there is a very special place. Take your possition seriously!

Be believing even if the whole world doubts.

Happy thoughts

I'm back! Thankful to be back on the internet and in touch again ...

For today's pain managment tool I will be talking about "happy thoughts". I know this sounds maybe silly or overused - but the power of the mind on how you feel is very important! When my heart and mind are not in the right place I find that my pain level is much harder to handle and I feel helpless to endue the pain. So, if the mind and having a possitive attitude is so important to managing pain how can we keep our heart and mind in that "good space" for us? Well, first of all i think it is important to understand that EVERYONE has bad days when it is hard to be possitive. So, beating yourself up about that day when you just cry for no reason or for every reason doesn't help. BUT, it is also important to tell yourself that you can have a possitive attitude even though it may be hard ... and for me that means that I need to rely on something bigger than myself and that is God. I wouldn't have the power in myself to smile and be happy through the pain that I have day to day. When i forget that He is my strength then I begin to sink into despair and selfishness. It is a consious effort to give my feelings and my mind over to God every day, sometimes every hours or minute so that He will be my strength and so that i can focus on the things that are beautiful rather than on things that bring me down. There are a million or more happy things that I could think of that help lift me when the pain is bad - when I set my mind (in God's strength) to focus on these things it helps. Here are some of my favorites:
the love that God has given to me
the smell of a new baby
flowers
wind on a spring day
soft grass with bare feet
kids playing in sandboxes
my sweet husband singing
cello music
baby birds learning to fly

this list could go on and on --- There was a point in my life when I was very ill and literally laid in bed for months on end ... I saw the seasons pass from my bed going outside only very occasionally. I began to fear that I would forget all the things that I loved and so I began a little book called "My favorite Things" and made a list of over 200 things that make me smile. I would encourage each of you to do the same and when nothing else can cheer you up look at the list and thank God for each thing that makes you smile.

What are some of your "favorite things" that help you when the pain is bad? I would love to hear!

Internet!

Hello Friends! I have been out of touch which has been driving me nuts, as we have been house-sitting for a place with unreliable internet. Thankfuly today I had to come done to our more permanent house-sitting place and so can update you all with an entry!
This brings me to a VERY important tool for me (and probably for you if you are reading my blod) in managing pain: the INTERNET! It might sound funny, and I get tired of hearing people complain about facebook, or the internet and make fun of those who are on it for a large part of their day .. because for me the internet is my connecting place. I am often (almost always) too tired and in too much pain to plan ahead much, and that means that I often don't see people for days on end. I would go crazy (just ask my husband as I broke down last night and I couldn't stop crying!) without the opportunity to connect with others and feel productive. With the internet I can have friendships, can know how others are doing, and I think most importantly, I can feel like I am helping even a little through encouraging notes and through this blog! All of this helps a great deal with my managment of pain. Now, I understand that if I was unable to have internet for any reason, that I would have to learn other ways to feel these important connections - through letters or writing I suppose .. but I for one am very very thankful that God has not asked me to live in a place at this point where I cannot have internet!

Use the tools that God has put in front of you to help you deal with the pain you have today ...

(if you don't hear from me it i because of the lack of reliable internet -- and I DO appreciate those of you who are praying for me as I go in for an endoscopic ultrasound with biopsies on Monday - I react badly to a lot of sedative drugs and am a little nervious! OH and in other news: I had a stress echocardiogram on Thursay and I and my sweet husband were able to SEE the swelling around my heart - which again just confirms what is causing the chest pain - now we just need to figure out what is causing that swelling!)

Eating Healthy

In our culture you hear so so so much about eating healthy and loosing weight and all these fad diets ... but for those in chronic pain the issue of eating healthy is much deeper. This week with Easter I have been eating a lot of jelly beans that people have given to us ... and if we're being honest all month I have been eating much worse than I should. Some of this is due to a gluten test that the doctor has me doing before biopsies that I will be having next week to see about if I have celiac. Because of this I have been enjoying eating a lot of things that I don't normally eat. At first it didn't seem like a big deal - but after a month of eating poorly I am noticing that my pain level is skyrocketing. The ironic thing is that when you are in a lot of pain or sick the last thing that you want to do is cook or plan any meals - let alone healthy meals! I usually just wish that I could eat something easy and fast and often not what is best for me - something soothing like a popsickle or ice cream or fruit snacks. Often nausea goes hand in hand with pain, and so fighting to eat meat in particular is very difficult. This is an area that I feel I can definately grow in and I need to grow in. I think this is one of the most important tools for managing pain and managing life in general - pain or no pain!

Preparedness

HAPPY EASTER DAY FRIENDS!!

I hope that you were able to enjoy and rejoice in the Risen Savior (at home or in a church setting) - this holiday makes me so so happy.

Today I ran out of my fast-acting in haler and had left my nebulizer at home. After half of one family Easter I was struggling to breath and we still had the other family to go to! So needless to say by the time I got home I couldn't talk because I couldn't get enough air - my nebulizer helped but I noticed that the struggle to breath seems to have agrivated the swelling around my heart and so I may not be able to sleep tonight much. All of this is to illustrate my third pain managment tool - and that is to be prepared at ALL times. Makng sure that I don't run out of any medication or end up out of the house without my heating pad .. all of this can have a big impact on pain and managing it. The asthma attack didn't directly relate to my pain, but now my whole body hurts worse from spending 5+ hours struggling to breath and struggling to hide how uncomfortable I was from everyone around me. It would be much better if I would take the time to refill all of my perscriptions on time, and pack correctly or have extra stuff in the car for when we are out of the house.

A good lesson and reminder of a very important pain managment tool.

Soft Blankets

Today has been a wirlwind as I have been baking for Easter - I made hot cross buns (I have wanted to make these traditional old Easter pastries for a long time and it was such a sence of accomplishment to make them!!!) and three kinds of cupcakes - easter bunnies, easter basket (filled with jelly bean "eggs") and then just pink with a bunny candy on top. I love Easter! I love celebrating the Savior Jesus and His resurrection - His giving an opportunity for new life to everyone who belives in Him.

But I woke up in a LOT of pain. So i knew that for me to get through the day I would have to be laying down for a lot of it. One tool that helps me very much with managing pain might soud funny to some of you - but it is: COZY BLANKETS. Feeling the soft warm blanket on a painful body is kind of like a gentle hug. It helps me feel protected and just puts me at ease. I suggest that all of you who have pain make sure that you have cozy blankets throughout your house. I have to have my special comforter on my bed always, and I have special blankets in the living room that I can cuddle under while watching TV or reading. Pillows are another part of this. I find that when I get myself all settled and cuzzy under blankets and with soft pillows I feel so much better and I am able to handle the pain in a better way.

In fact: now that my baking is all done I am going to end the day with a cuddle with my husband and a soft blanket right now ...

HAPPY EASTER FRIENDS

Pain Managment Tools

It's the beginning of a new month so I am going to be writing about a new topic related to living joyfully while in chronic pain. So the topic for April will be very practiclly - ways to help deal with the pain, a self-help look at methods of pain control that I have found helpful - or a toolbox of pain-managment tools!

The very first thing is probably the best pain control tool that I have found (keep in mind that everyone's pain is different and what works for me may not work for you!). Since a lot of my pain began with female issues which the doctor said were similar to hard labor pains - and then with IC the spasms are just as bad if not worse - the first tool is a heating pad. I literally take mine with me wherever I go (at least if I will be sitting for any length of time or sleepin especially). I even have an outlet which I can plug myself in to eh cigarette ligher while riding in a car! I have had people tell me that I need to wean myself from using the heating pad - and I actually have found a way of sleeping where I don't use it, but for the most part the heating pad has saved me MANY trips to the ER or doses of high pain medication. The heat distracts my mind from the pain and relaxes my muscles.

CAUTION: These come with warnings and they mean what they are talking about! I have permanent deep tissue scarring on my low back from using the heating pad on high for too long at a time and without protection. The surgeon who did my hysterectomy cried when he saw it and said that this type of burns he has only seen on the very worst cases because the pain of burning the back hurts so much less than the pain inside from disease. Over the years since then, I have learned to use it safely, and it is still the most effectie way to relieve my back pain.

I sometimes have felt very self-consious and embaraced about my carrying around a heating pad with me to people's houses etc. But the times when I have been too proud to bring it have been the times when I have ended up in more pain and had to take more medication to try and control it after the fact. It does take some hummility to be able to use these in public - but it is so worth it!