Getting Crafty With My Arthritis!

The next edition of ChronicBabe Blog Carnival is live on August 24, 2010, and the theme is Arts & Crafts. It is all about how you design creative idea to make life easier when you have pain and joint problems.

I have to say that as far as arts and crafts go, I'm not all that clever or creative, but when you have arthritis and other pain conditions like I have, sometimes you realize that creativity often presents itself when it comes to necessity.

I think that my most creative invention ever was my Intuition razor extention. When I had my hip replaced in 2003, I relied on my hubby to shave my legs, help me with taking a shower, and even washing my hair when I couldn't walk the steps up to the shower.  When I was finally able to use the shower, and I knew that the hubby really didn't want to shave my legs anymore (after all, he had to sit on the floor in our one-person shower stall with the water spraying him in the face, while he shaved my legs), I had to think of a clever way to shave my own legs without bending over to do so. I ended up using my Intuition razor and the long handle to my shower sponge. I cut the sponge off the handle, and I attached the handle to my Intuition razor with 5 hair rubberbands. It worked out great. I do not have it anymore to show you my creative invention, so the next time I make one, I'll be sure to take pics!


I mentioned that the hubby had to also help me wash my hair when there was no way for me to go up the steps to get to our shower.  We tried several different ways to wash my hair,--in the kitchen sink, in the half-bath sink--but the best way to do it was to take a water basin that you use to wash dishes. Put some warm tapwater in it to begin. I layed on my back with my head off the sofabed. The hubby used a big plastic cup and filled it with some of the warm water in the basin, and he carefully poured it over my head. Then he added the shampoo to my hair and rinsed it the same way that he wet my hair to begin. Then he conditioned it and rinsed again with the cup. It worked wonders! They do sell hair washing basins and hand-held sprayers, but they can cost a fortune. This was an inexpensive way to have your hubby or significant other or caretaker wash your hair with no fuss!


I have found that washing your dishes can be really hard when you have arthritis in your hands. The dishes slip out and slide out of your hands! I found that the rubber mat that you put in your tub works great in your kitchen sink. The rubber mat keeps the dishes from slipping in the shiny sink, and then you don't have to worry about them sliding out of your hands and spill water all over or even break the dish!

When making my bed, I use a pizza paddle to tuck in the sheets! This is a great idea if you have trouble with your hands and fingers trying to tuck sheets in by hand. It can be hard and very painful, but the pizza paddle helps tremendously!

Sometimes using a wash cloth or spongy or scrubby can be difficult to hold onto on really bad painful days. I like to use a wash mitt. You don't have to grasp anything then, so if your hands hurt badly, you won't have to hold onto anything, just wear the mitt. They are easy to make with old towels and a sewing machine!

I do have a shower chair from when I had my hip replaced, but it is big and bulky so we have it in storage. I do find that there are some very bad pain days where I cannot sit all the way down in the tub, and I am too fatigued to even stand for a quick shower. I use an all-weather garden chair in the shower. It is a lot less huge and easier to handle.

I keep a gripper in the tub/shower next to the faucet knobs. On some days, the pain is so bad, I cannot even turn the water on or adjust the temperature. I use a gripper to grasp the knobs and make it easier to turn. I just use the same gripper that I use in the kitchen for opening jars. I have like 3 of them, so I keep the one in the kitchen, one in my bathroom, and another in the guest bathroom.

I use a toothpaste squeezer device to squeeze out the toothpaste from the bottom of the tube. I cannot squeeze the tube with my hands because it is hard to make a fist. You can find them at the dollar store even!

If you have a regular toothbrush, try putting a large foam hair roller on it to make it bigger and fatter to hold easier--you can do this with eating utensils too. Otherwise, if you get an electric or battery-operated toothbrush, they are bigger and fatter and easy to grasp as well. For flossing, I use the reach flosser. It has a handle to hold the floss, and it makes it easier to hold than those tiny dental floss strings in your hand.  You can also use a large foam hair roller on it as well. Use the same idea with your foam hair roller on anything with a handle like hairbrushes.


When it comes to filing your nails, it can be a lot easier if you take an emery board and glue it to a large sponge. You can more easily grasp the sponge than a tiny emery board. It is a lot easier on your hands!

Anything that is aerosol in a can--shave gel, hairspray, and even my olive oil that I use to coat pans--the lids can be difficult to take off and put on. I just keep them off all the time!

You can loop a scarf around certain handles to pull them open with your forarm instead of your hands and fingers.  A good example for this use is on the refrigerator, if you have those type of handles that you can tie a scarf around.

Keys can be hard to turn. Have your keys made with a large plastic handle that is easier to grip or put your key in a stiff sleeve to make it easier to turn.

You can put a laundry basket in your car attached to the floor with electrical tape. This way, when you have groceries, you can place them in the basket. They will be easier to reach, and you don't have to worry about bags falling over in the car.

I hope my ideas and creativity helps you out! Just remember, if something is hard for you, try to think of a better way of doing it. Let those creative juices flow!!!

Please, Can Anybody Hear Me?...Are You Really Listening To Your Patients?...It Takes Patience To Have Patients...

Want to check out ChronicBabe's next blog carnival? The next edition is live on August 10, 2010, and the theme is How Do You Deal with the Medical Establishment? I would love to hear your thoughts on the topic! I did not get my post finished in time to enter, but please take a look at the other posts. They are great reads!

To get my background as to what I've had to go through as a patient to finally get diagnosed with multiple chronic illnesses, please read my post: Connecting the Dots...

It can be miserable, stressful, time-consuming, overwhelming, humiliating, frustrating, patriarchal, condescending, out-of-touch, exhausting, misunderstood, misrepresented, not patient-oriented, not patient-driven, not patient-concerned, not patient-advocated, not respectful, and down-right jaw-dropping at times. I'm talking about the Medical Establishment--the system as a whole, doctors, sometimes nurses, insurance companies, pharmaceutical companies, the FDA, and on and on...

If you are a living, breathing person, you have experienced the medical establishment in some way, shape or form at some point in your life from the time you are born, taking your first breath, until that very last breath you take, which may very well be in a medical facility in both cases, and anytime in between! Being a part of the medical establishment as a patient is not always because of a negative situation or time in your life. The birth of a child is a wonderful time to cherish, and it is a great time to actually want to go to the hospital or birthing center! Of course, just because you are only expecting a new beautiful bouncing baby full of life and joy to hold and love, there are always risks when it comes to your health and that of all those involved.  Be prepared when a procedure or anything is going to be done that is not in your total control. Well, when I put it that way, you should be ready for anything at anytime because we are never truly in control at all times! OMG! I can't believe I just admitted to that! LOL!

I'm going to start off by saying that when you go for a normal check-up or physical, bring a notebook or something that has your questions already written up on it, so that you know exactly where you are going to take your appointment. Otherwise, you will forget what you were going to ask, get sidetracked by the doctors plan for the visit, and go home completely discouraged that you didn't say or do what you really wanted!  Here are some free pointers from me to you:

1. Bring a notebook or paper with prepared questions already written up but with enough room to write down any new information that you may receive, or if you come up with any new questions while waiting for the doctor or as he answers the others so you don't forget to go back in your mind.
2. Always bring a printed out list of all your meds, the frequency and amount you take, and when you take it. Also have written the doctors that prescribe them, your pharmacy phone number, and what you take the meds for. You really should know why you take your meds. If you don't know, that is a great question to put in your notebook for when you see that particular doctor next time! A printed list is also great to keep in your purse and car, and with you at all times. If there is an emergency, the emergency response team will have a list of your meds at the time they get to you to be able to give you the appropriate treatment at the soonest possible moment!  Also, if you have it saved on a disk or desktop, etc., then you can go to it easily to revise it and update it and print out a few new ones to replace the old ones. I also use my list to bring to the pharmacist to mark the meds I need refilled. It makes it so easy, and they never forget to fill any, etc.
3. Sometimes when we go to the doctor, we are told news that we don't always like to hear. We may be in denial over certain conditions that we find extremely hard to face like a terminal illness, or even an illness that we know we will live with for the rest of our lives that will be chronic and cause intense pain, probably won't kill us, but will cause a multitude of problems, dependence on others and disability.  This is why in cases like this it is important to bring someone with you, someone who is close enough to you that they care, but not so close that they will also deny and not be able to actually "hear" what the doctor or nurse is telling you.  Then, later, that person can go over it with you again and again to make sure you got everything that the doctor said, that may have just skimmed the top of your head and not actually made it into the brain or memory or a place of understanding or downloading of information.
4. We all need a patient advocate, this kind of goes with number 3, but there is a little more. The patient advocate will keep pushing the doctor to learn more about the disease or condition or the results to a certain test. She or he will also make sure that you know all there is to know about your meds and the side effects and interactions, etc. You have to be your own advocate as well. Stand up for yourself! Patients have rights! We don't walk in, get lectured on how terribly we've taken care of our bodies, that now we have many illnesses, etc. and we are left to pick up the pieces alone. NO! Don't settle for crap like that! Believe it or not, there are doctors, and these are the ones you want to have as your doctors, that will be your advocate! They will fight for your rights, work hard to find the right meds to suit you, make you feel better, and want you to have the least amount of side effects to function so that you can live as healthy and "normal" life as possible.
5. Go doctor shopping. If you don't mesh well with your doctor, look for another one. You don't have to have an awful doctor. A smart doctor doesn't have to be impersonal. There actually are doctors that will take the time to really listen to YOU! Doctors are stereotypically thought of as unfriendly, but smart because they are able to figure out what's wrong with us. They may not take the time to talk about what problems and new ailments or side effects you may be having, but they are supposed to be very smart, so you will continue to see them. You really don't have to do that. I have found that there are really great well-rounded smart doctors who will laugh with you, take time to listen, and they focus on you. They are usually the same doctors who are great patient advocates! The right doctors for you are out there, but you have to do the foot work.  Think about when you go shopping for anything, ladies...shoes, purses, laptops, cell phones and even nail polish! We take our time, compare and contrast, maybe look on-line and in person, ask friends what they like, or what they bought. It works for you men too...any gadgets and tools and vehicles or lawnmowers, etc.  You do the same thing, shop around and compare. If we do this with all these things down to what we paint on our toenails, why wouldn't we shop for the best doctor for ourselves. Truly, our health and even our lives depend on this...so shop for your doc!
6. Get a second opinion. Even if you have all the faith in the world that your doctor is right and that the MRI, lab work, and general work-up makes perfect sense, I still say get a second opinion. You could be put on a very toxic medication or even surgery that you may not necessarily need. Also, what if the lab work was incorrect, or what if the MRI was showing something that wasn't really there?  Nothing is 100% in this world so get that second opinion, and if you get a gut feeling that something isn't right, get a third, fourth, fifth, sixth, etc. opinion until your gut feels like the answer is what it truly is! Sometimes, it may seem that the entire medical establishment cannot seem to find what you want them to find, not that you want to be sick, but you ARE sick! You have been sick, and that is why you are going to all these doctors. If you feel sick, you are sick, and you should not stop looking for what is wrong until you find it. Don't let anyone say you have exhausted all options. You never can exhaust anything except maybe yourself! LOL!
7. Make sure when you start on a new treatment plan, whether it be meds, PT, an exercise program, supplements or a new way of eating, learn everything you possibly can about that treatment plan.  Go online, talk to others who have done the same treatment option, and check for local support groups or local organizations that have information about your disease and treatment options.
8. Find like-bodied, like-minded folks. It is still good if you have an acute illness, a chronic illness, a terminal illness, or any type of disease, syndrome, or disability to be with people who understand what you are going through, and know what if feels like to be sick! I also think you should have a few "normal," "healthy" friends that keep you grounded--that is the term I would use because otherwise you could end up inside yourself and lost in the disease. With your normal friends, they may do things with you that your sick friends don't that keeps your mind off of the illness and on yourself. Like-bodied, like-minded individuals are great because they don't care when you have had three straight horrible months, and so now you are focused on "me, ME, ME!"  They don't care if you want to have a pity party. They don't care when we sulk, when we cry, when we are on the couch in our PJ's all day. They don't say things like, "You don't work? I just met you, and I already hate you."  Normal people say that because they don't understand that sometimes we can't work at no fault of our own, and work to us is missed a lot of time. Many of us go to school, college even, to specialize in our passion, only to have to give it up, often at a very early age. Some of us, myself included, loved working. So continue to have a support system made up of those who have similar issues to help you get through yours and vice versa.  Also, have in you support system, those that are "normal" to distract you at times so that your life isn't all sickness and doctors!

I have the wonderful experience of being on both sides of the medical establishment. I am a registered nurse as well as a person with chronic illness. I went to school, studied my passion, worked for a short while as a nurse educator, mainly as a diabetes and asthma educator.  I worked with children for a while, then with adults, and decided I liked the hospital out-patient setting with adults and children alike.  The teaching approaches were different, but that was the biggest difference (aside from the obvious differences). Actually, adults have just as hard of a time sitting in a classroom setting and paying attention as children, and our patience can be just as easily tested by both.

Bottom line is, to be on the medical establishment side, there needs to be the consenses that the patient is in charge of his or her own health. No one makes them see the doctor, forces them to take their meds, or straps them down and does procedures without consent for the sake of the medical community!  Since this is the real case here, we should be calling the shots! We should decide how long the doctor can see us, how much we can afford, what option we think is the best for us, with the medical establishment's help with our options to choose from. We shouldn't have anything hidden from us--side effects, research, test subjects' results, and other options that we may like better or that might be our best option for us. Sometimes the medical side gets wrapped up in what they want and forgets that we have rights, and wants and reasons why we wouldn't choose that option, but we would choose another.  Not every option, treatment plan, etc. is right for every patient, and that is why it is all the more important that we are able to communicate with the medical side of this dance. The thing is that many, many times, actually most of the time, the medical side gets so lost in what they want to achieve that they always take the lead, and we, the patients, never get a turn at taking the lead!

The medical side really needs to start listening to what the patients really need and want. I think a lot of times this isn't just the medical sides fault though. Maybe if we were more prepared at our visits, they would take us more seriously as patients that are taking an interest in ourselves, as being an active participant in our care. When we show initiative, this should tell your doctors that we are not easily persuaded, and we are ready for whatever is thrown our way.

It's not just the listening though. The medical side is a system; it's a business now. It isn't healthcare so much anymore. Patients feel rushed all the time. We see the doctor in 5 to 10 minutes. Make the doctor see you and answer your questions. You should be listened to, but the doctors need to have patience to have patients. Many may have not ever learned patience because they were thrown into the health business. Some older doctors remember what healthcare is all bout, and when they have to listen to a patient, they suddenly remember the good 'ol healthcare days when you would see the doctor for a longer appointment, and the doctor knew your name, and he actually cared what was best for you and not for the medical community as a whole or what would better him/herself. So force your doctor or other medical care worker to learn patience by being a prepared patient which forces them to listen, and in turn you will get what is best for you!

So I feel, coming from both sides I can address both sides. I do not work anymore since I'm on disability. I loved being a nurse. I love people. I love to support others with chronic illness who need support to be able to fight for themselves in a system that doesn't really work for us. Knowledge is power. We are Warriors when we stay educated and stand up for ourselves and others like us. So learn all you can beforehand, be prepared, and be an advocate for yourself and others. I am a nurse still at heart, and I continue to keep up with my education hours so that my license is active. I am your advocate always! I am here for us all! We must support each other, so the medical establishment sees that we are an extremely strong force that will get our way eventually if it benefits us and others' health, well-being and our day-to-day lives!

STAY STRONG MY KNOWLEDGEABLE WARRIOR FRIENDS!!!

A tsp of Sugar, A tsp of Spice, A Dash of Everything Nice, And Several Heaping Cupfuls of Pain from Chronic Illnesses...That's What Dana Is Made of!!!

Well.... It is OFFICIAL! The topic and Date (August 11) has been set for the very FIRST GRACEFUL AGONY BLOG CARNIVAL!! The Topic for the FIRST ROUND was left up to a vote, and almost 50% of the votes went to "Let me introduce myself"... This seems like a good place to start... and is quite a generic topic, so please run with it however you'd like to... Get creative!! What brought you to Graceful Agony in the first place? What is something that nobody in our group knows about you yet? What makes YOU tick? WHO ARE YOU???? 

OK, so the title starts out kinda nice, and then you may think to yourself that it turns out to be a pretty scary title, which could make me a person you're not sure you'd want to meet. Well, I'll make it clear for you right now...You definitely want to meet me!  No, I'm not conceited at all so please don't get the wrong idea. I'm here on this planet for one reason only; I'm on a mission to unite all people with chronic diseases and chronic pain together as one force and to spread the word to those who do not have a chronic disease or chronic pain to understand what we go through day in and day out, and in my case, night in and night out!!!!

I am very purpose-driven, and if I'm not, then it's very hard for me to get up in the morning, (although I may still not always get out of bed on bad days, or semi-good-semi-bad days--depends on how you look at it). It isn't always about the pain, sometimes the fatigue is so overwhelming that it takes so much energy to use the restroom, that taking a shower, brushing my teeth and hair, putting on make-up, getting dressed, making breakfast, and then actually leaving my home, would deplete all of my energy stores! It's hard to comprehend this if you don't deal with this daily.

So why am I who I am? Good question...I could just say that I don't know, have no idea, just am, but for one that would be boring, secondly, that just wouldn't make for good writing for a blogger, and third and finally, it isn't true! I know why I am who I am. It took my getting really sick to figure it out, but now I know. It's too late to fix it, but I can use what I know about myself to help others and to continue to help myself...OK, I know stop blabbing and get on with it!

I was always a very spiritual person, and for a small portion of my life I was actually very religious. What I mean is that as a Catholic female, there was a very short time that I felt drawn to the religion vocationally. I thought I wanted to be a Catholic Sister--yes, a nun!  I knew there was a spiritual pull at a very early age which was hard for me to fully understand. I was only 10 years old when this thought entered my head, and the only thing I could think of to live a life for God as a Catholic female was to be a nun. I didn't realize that you could live a life FOR GOD and not devote your life to a religious "organization" to do so. I didn't really come to terms back then with my spirituality. I didn't understand that spirituality was something that you needed to find internally in order to meet God there and then reverse the spirituality outward toward others, all the while, touching others with God as well. Who knew?  Well, not me obviously. I probably didn't fully understand this until my 20's and 30's when my chronic pain and illnesses got the better of me. Although, I always had some kind of struggle with pain and illness in my life, it wasn't really until my 20's and 30's that I really had to step back, then step inside myself, find myself to find God.  Wow, that is some really deep stuff!

That is when I started questioning my Catholic teachings, which you can learn more about in another blog devoted to My Path of Self Discovery.  I still go to a Catholic Church on Sundays and on Holidays, and I want to raise my children in the Catholic faith, but I believe that there is a reason that there are so many different religions out there. There is a consistency in them: there is a belief in a God, love others, treat others like you want to be treated, and if you live a good life you will end up in Heaven, on the Other Side, etc.  So I don't think it really matters what religion you follow, the doctrine, etc. I believe that your spirituality is what's important because that is your connection to yourself, to your God, and to nature and others! That is what really matters. I think having an organized religion, for me, has one important aspect in life though; it gives order and a place of community for common believers.  However, these "common" believers should be able to have their own separate beliefs that differ from their Church's beliefs too ( unless of course they differ so much that they are immoral and unethical, then that is just completely not what I'm trying to say here at all!).

So, I hope this helps you to understand a little more about me. My spirituality, my relationship with God, defines me. It is what I base my relationships on, and how I look at the world, our world--nature; the animals, the trees, the wind, the rain, the sunshine, etc.  I have so much to be thankful for...

So how can someone with the amount of pain that I endure every single day of my life be thankful? How can I think of anything or anyone but myself?  How am I not mad at God?...

I can't lie; there are days that pain takes over every moment, but there will always be someone worse off than I am.  I am thankful for days that I can get out of bed. I am thankful when I can get on the computer and see all my facebook friends and friends from other social networks who can understand what I'm going through. I am thankful that there is always something that I can look forward to. Right now, we are adopting a baby! What is bigger than that!?!  The world is bigger than me!  Yes, I said it! The world is bigger than me! Sometimes when I start to get centered on myself, I have to say that, the world is bigger than me! To some, this may seem silly, but it knocks me down, and helps me to realize that it isn't all about me. I am not my own world. I am a small part of this huge, beautiful world!!! Of course, although I am just a small part, I can still be a great big voice! And I like to think that this little bitty blog is my great big voice! And yes, I do get mad at God! God to me is my Father God, my Mother God, my Friend. As my Friend, I sometimes yell at Him. I will sometimes say that I am sick and tired of being sick and tired. Why does He allow this to happen to me? After I vent, then I go to Mother God, and I ask Her to just hold me because I'm so upset with the way things have been. Life is so depressing. Then I go to Father God, and I ask for His forgiveness!!! I think He wants us to do that! He wants to be our Father, Mother, and Friend!

I have always been the person to take on every one's problems and pain. I would hold onto their pain in hopes that they wouldn't feel the pain anymore. I never knew that this was hurting me in the process! Please take it from me, do not take on other people's pain and problems! You can help them out and support them, but you can damage your own body by taking on too much.

Yep, this is another thing you may not have known about me! I am a medical intuitive and energy healer! It took me years to understand it. I just recently started doing free remote energy healings for my fb and other social network friends. I'm thinking about starting an energy healing Blog Talk Radio show. Once I get enough followers that know who I am and what I can do to help them, I can start a practice here in Atlanta, where I can see clients in person, and get paid real money. Until then, if you are in need of a healing, send me a message with the date and time you would like the healing, and if you are lying down or sitting. I would love to be able to help.

So I hope these are some things that you hadn't known about me already, and I hope I haven't scared you away. It's a lot to take in! But, I'm Me. My hubby likes to just say he was drawn to me because I was eccentric. Wow, he didn't know the half of it.  Now he has to deal with energy and dreams and the paranormal and metaphysical world that I live in, which is only just part of my world; the other part is much bigger--CHRONIC PAIN AND CHRONIC ILLNESS!