I Already Gave My Right Arm To Be Ambidextrous...Now Read My HIPS!

Now Read My HIPS! is returning very soon. My blog is currently under construction. I am doing some minor renovating and will begin blogging for the New Year, possibly before. I can't wait to start up again. I have missed all of my followers! I love every single one of you! You have helped me to become who I am today! I could never have continued my blog without all of your support. Please be patient, and please continue to support this blog as well as my other blog Chronically Mommy. Pass this information on to anyone that you know may be interested in knowing...To be continued...

I had my shoulder and both hips replaced, and I am changing things up a bit on this blog! I began belly dancing in 2010! Yes you read that correctly!! I am going to be blogging about my experience as a woman with several joint diseases and conditions who had her shoulder and both hips replaced who now belly dances and performs! I still have pain, but I want to blog about how I have fun too! Now Read My HIPS! Please read Chronically Mommy (chronicallymommy.blogspot.com) for info on health/pain.

Hi, I have avascular necrosis in my shoulders, hips, and knees, psoriatic arthritis, sjogren's, fibromyalgia, and hypermobility. I found out that I have autoimmune arthritis in my cervical spine and a bulging disk in my lumbar spine. Seven years ago my spine orthopaedic surgeon told me I had a small amount of autoimmune arthritis in my SI joint. The question still remains: Is the spinal involvement due to Psoriatic Spondylitis, which is a more severe form of Psoriatic Arthritis or is it a new diagnosis of Ankylosing Spondylitis? Whatever the diagnosis, the treatment will remain the same. I had my left hip replaced in 2003 & my right shoulder replaced in March of 2010. I literally gave my right arm to be ambidextrous! LOL! Lastly, I had my right hip replaced on May 10th, 2012.

I began belly dancing. Yes that's correct! I began belly dancing in 2010, so now it is time to "read my hips." Pain is still another part of my life. It is just a question of when, where and how much, but I would like to use this blog to write about my experience as a woman with several joint diseases and conditions who had both hips and a shoulder replaced and now spends her free time belly dancing and performing! I belong to a dance troupe since February of 2014, Seshambeh Dance Company. I am dancing weekly with my troupe in an advanced class and on Saturdays with another class which focuses on exercise and being a strong woman. I am performing a lot more often now, at least 4 or 5 times per year! Join me in my journey!

At times, I take 16 to 20 pills a day. I go every 4 weeks to the to get a 2 hour IV for my autoimmune arthritis diseases. Just when one thing seems to be doing better, something else goes downhill! My attitude, however, is always going uphill! I am 42 years old, have been married 16 years, and my husband and I adopted Mick in Dec. of 2010! I have a lot on my plate right now, but I take it one moment at a time. I believe that God will never give me more than I can handle. However, I do need to learn to ask for help sometimes instead of always doing it by myself!

(Formerly "I Already Gave My Right Arm To Be Ambidextrous!")

Help, I need somebody,
Help, not just anybody,
Help, you know I need someone, help.

When I was younger, so much younger than today,
I never needed anybody's help in any way.
But now these days are gone, I'm not so self assured,
Now I find I've changed my mind and opened up the doors.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me.

And now my life has changed in oh so many ways,
My independence seems to vanish in the haze.
But every now and then I feel so insecure,
I know that I just need you like I've never done before.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me.

When I was younger, so much younger than today,
I never needed anybody's help in any way.
But now these daya are gone, I'm not so self assured,
Now I find I've changed my mind and opened up the doors.

Help me if you can, I'm feeling down
And I do appreciate you being round.
Help me, get my feet back on the ground,
Won't you please, please help me, help me, help me, oh.

Now Read My HIPS!

Now Read My HIPS!
Asmara "Beautiful Butterfly"

Blog with Integrity


Monday, October 18, 2010

The Year I Became A Zombie...Trick or Treat!

The next edition of the blog carnival will be posted on Monday, October 18. The theme: Trick or Treat! Halloween is coming soon and we started thinking, wow, medicine is like Editrix Jenni's favorite holiday. Sometimes you get treats, and sometimes you get tricks. We'd love to hear about the ups and downs of your experience. Show us the highs and lows, and the surprises!

Palms sweaty, heart racing, tremors, chest tightness, high blood pressure, nervousness, anxiety, agitation, urinary incontinence, goose bumps, rapid breathing, chills, restlessness, panic atticks, inability to sit still, nightmares, unusual dreaming, abnormal sleep pattern, insomnia! These could be the same effects before, during and after a scary movie or a haunted house. These are examples of side effects from different medications.  I figured this topic would be fitting with Halloween around the corner. When you have chronic illnesses, you have many different medications to take. With the many medications, you have many side effects. Because you have so many side effects, you have to sometimes take even more medications to counteract the awful effects. And sometimes, you can even make more side effects from the added medications to counteract those original side effects. It can become an endless cycle!

I was once misdiagnosed with depression when I went to the doctor with hip, knee and shoulder pain. I told the doctor I couldn't walk up the back steps. The doctor was thinking it was possible that I could be showing signs of multiple sclerosis. An MRI and CT scan were performed. They came back negative. The doctor told me that there were no lesions. He said that I most likely was having symptoms of depression because it can cause pain as well as the more common symptoms. I was sent to a psychiatrist and was indeed diagnosed with depression. By then, though, I do believe I was depressed that no one could figure out what was causing the disabling pain that was making me unable to put one foot in front of the other or reach above my head. I was put on an antidepressant, and at first it did nothing.  Then I was put on a different one, then another, and then another, etc., etc., etc. until I had tried every single SSRI out there. I was told that I probably needed to increase the dose. I was put on one of the many that I had tried only on a higher dose. I began to feel extremely energetic. My thoughts began to raise. My mind began to wander. My legs became restless. I felt like I was losing myself. I was getting racing thoughts. My psychologist told me that I must have been diagnosed too soon with depression. I must have bipolar disorder where I have both mania and depression. I was put on a cocktail of drugs for bipolar depression. I got all the manic symptoms under control, and basically the depression was under control too. I felt absolutely nothing! How can you feel nothing when you had been in so much pain before? I knew something was terribly wrong. I can tell you this. I hate being in pain, but I never ever want to feel "nothing" again. I got to a point---here comes another Halloween reference--where I was turned into a living Zombie. I WAS "night of the living dead." I sat and stared for hours. I could no longer drive a car. I lost my concentration so I could not even comprehend a 30 second commercial let alone a 30 minute T.V. show or a 2 hour movie. I couldn't hold a normal conversation because I didn't even feel like I was in the same room as the other person talking with me. I felt like I should have just walked around moaning "brains, brains..." My walk was more of a "cogwheel," and my tongue was stiff when I tried to talk. I even drooled slightly. What had happened to me? Would I ever get through this?

Well, I was misdiagnosed, number one. I never had depression. When I was given an antidepressant, my body had an adverse reaction to it. I had a manic episode caused by the antidepressant. I was never bipolar; the medication that was given to me for the wrong diagnosis caused a severe side effect that mimicked bipolar disorder. The medications for the bipolar disorder never helped the bipolar disorder, they only caused multiple side effects, therefore turning me into a living Zombie!

I moved away to another state. I had no medication left over. I woke up from a terrible curse! Someone cursed me and turned me into a Zombie. When the curse wore off (the meds ran out), I woke up as a whole person again. I had no depression, no mania. You know what I did have? I had a hell of a lot of pain; that's what!  Trick or Treat!

Thursday, October 7, 2010

My Favorite Hobbies Help Me Cope with My Headache Pain--Wanna Find Out How?

Hobbies are so important, and as I've gotten older, my hobbies have changed often. It seems that I always seem to go back to those hobbies that involve some sort of passion of mine. The more I enjoy doing things, the happier I am, therefore the less stressed I am, and the less migraines I tend to get. Although when I was younger, I believe my migraines were brought on primarily by hormones and other issues of my physical body not being balanced out right, I am pretty positive that my migraines in my thirties are more due to stress and anxiety. Yes, I have a lot of physical body imbalances, and I'm sure I have hormonal issues as well, but I am dealing with daily stresses that I just didn't have years ago. We are adopting a child, I have physical disabilities and chronic pain from joint diseases (aside from the migraines), my husband is up for tenure, I am going through a spiritual journey on top of my physical journey, we have moved 3 times in 8 years, I can no longer work, money is always an issue, my dogs are getting older, my oldest dog is now blind with diabetes and 3 legs, my other dog hates every other dog he encounters, we sold our house in KY so we live in an apartment, we are looking to buy a house when my husband gets tenure, and the lists goes on and on. And many of these issues were never even a thought in my head years ago, or even in my twenties.

A new hobby that I have recently picked up is painting. I began by painting a picture of frogs on a log with a cherry blossom tree above them and a bird on a branch. I got carried away with way too much in the picture actually. So I had a friend of mine help me paint a giant picture for our baby's nursery that we are getting ready for when we finally adopt a baby. I had imagined a giant painting of a tree behind the crib, but since we are in an apartment, I didn't want to paint it directly on the wall. We would have to paint over it when we move out, and we would be unable to take it with us. We found 4 canvases at Big Lots for "way cheap" (I'm all about finding the best deal--if that could be a hobby, it would be top on my list), and we decided to put 4 18" by 24" canvases together to paint the giant tree on. I had found online a "heart tree", so we pulled that picture up on my laptop and painted it freehand on the canvases. I am so proud of us! I have decided now that I can really paint if I put my mind to it. I find it very relaxing, and it really makes me not think about anything but what I'm doing at that moment--PAINTING! The painting turned out beautiful. It is a tree with hearts in place of leaves, and a little child is reaching up and grabbing one of the hearts from the tree. Since then, I have painted an angel under a cherry blossom tree, a new painting of frogs, a turtle, an owl on a branch, and another painting of a frog and a dragonfly. I am having so much fun!

A couple hobbies that I tend to do and come back to again and again are sewing and floral arranging/making wreaths. I have a sewing machine, and have made everything from place mats to doggie's scarves to clothes. I put it away for a few years, and I have recently brought it back out to make curtains for the baby's room. I also like to buy artificial flowers, grape vine wreaths, vases, and the mixture to make the water that turns solid. I have made wreaths for every occasion and holiday, and I make sure to change the wreath on the front door for each season and holiday. I also like to buy beautiful, real-looking flowers and put them in small vases and add rocks or marbles to the bottom, and then finally add the mixture that looks like water but is a solid. I usually just have one single flower in the vase like a red rose. I also like to buy or pick fresh flowers and arrange them in large vases. I love to mix the colors with bright green leaves and watch them bloom! When we had our own house, I did more of all of this stuff mainly because we had a lot more space, and I could set everything up in the basement.

Going with the flower subject, I enjoy gardening. There is something very therapeutic about gardening! Since we do not have a yard anymore because we live in an apartment, I can only take care of my 3 house plants. I would probably enjoy growing my own herb garden which I can do in my kitchen or my sun room. The wonderful aroma of an indoor herb garden would really be a nice addition to our home!

This is taken from our adoption profile. You cannot click on it. There is no link to anywhere. On the adoption website, it takes you to our profile, but it doesn't here. Sorry for the confusion!

I enjoy spending time with my fur kids. I believe that playing with them, touching them, and petting them lowers my stress and anxiety more than any other activity. So any hobby that involves my fur kids will definitely reduce my migraines.

I love music and dance. I was a professional dancer, which I have mentioned before. I used to dance at a performing arts center 3 hours a night when  I was very young. I would become a part of the music and literally feel myself inside the music and the music inside me! Now that is a wonderful hobby to reduce stress and help with migraines, but for many years I was unable to dance because of my joints. I will never be a professional ballerina again because my joints are too badly deteriorated. I have however recently begun to dance in a Nia movement class. I am getting the same feeling where I and the music are one. It really works well to relieve stress. I have also begun belly dancing. It is a little more difficult, but I am focused on the belly dancing and nothing else for that one hour. The exercise is good for me, and I am having fun, which is really important to reduce stress and anxiety and pain!

And my two fairly new hobbies are blogging and my blog talk radio show. I have always written in a journal or a diary. I felt as though it helped to write down emotions, things that were bothering me mentally, and when my pain was really bad. I always would look up inspirational quotes and focus on them for the day. Then our world became so computerized, everything and everyone was online. I began to blog about my spiritual journey first on My Path of Self Discovery, then I started my physical journey blog about my chronic pain, etc. Now I have a Blog Talk Radio show that shares the name of this blog I Already Gave My Right Arm To Be Ambidextrous! I talk about chronic pain and healing. I have many different subtopics that I will address. The show will be every Friday night at 11 pm ET. After my first Blog Talk Radio show, I was asked to be a guest host on Egun and Then Some... They also asked if I will continue to be a guest host on their show weekly with my own chronic pain segment! So I haven't set that up just yet, but I will let everyone know when that will be. You can check out my first show about me, Dana Morningstar, and what the show has to offer.  My next show is about "The Worst Pain Ever!"  The call-in number is: (714) 459-3943. I am basically still journaling like I used to do, but people all over the world are eavesdropping into my brain, my life, my world. It is an amazing thing! I feel better when I talk about what is bothering me. I feel even better when others can comment about things that they are experiencing as well, which journaling alone does not have. Now with the Blog Talk Radio show, people can literally "hear" my story and listen to other people's questions. I have to say that it is really helpful for my pain issues and it is a hobby that can also "literally" be passed on. Anyone can read my blog and listen to my Blog Talk Radio show! My stress and pain is decreased, and I help to decrease others' pain and stress in the process, which really makes me happy!

Basically, in summary, all of my hobbies are therapeutic to me, not just for my migraines, but for my other chronic joint pain conditions. They reduce anxiety and stress, lower my pain, make me happy, cause a distraction, keep my mind focused on the hobby and nothing else at that time, and most likely lower my blood pressure as well. They keep me calm, relaxed, and feeling much, much better!

Monday, October 4, 2010

The Funniest Thing About Chronic Illness

The theme for this edition of ChronicBabe's Blog Carnival is: The Funniest Thing About Chronic Illness. It's not all tears and struggles. Sometimes chronic illness is damn funny - either to us or to others. Sometimes we use humor to deal with the hard times.

You may ask yourself, what is so funny about being chronically ill? Well, I'll tell you--belly dancing..

OK,OK,OK...second question that would automatically follow the first one is: What the hell is a chronically ill person doing belly dancing? Well, let me tell you the story before you "laugh out loud" or "roll on the floor laughing" or even "pee yourself laughing". Believe me, you will pee yourself with this story.

I was a professionally trained ballerina, who just happened to develop several chronic pain and joint conditions. I stopped dancing in high school because my boyfriend at the time had hockey practice and his games on the same nights as some of my dance classes. I chose my boyfriend over dance. This was a bad idea because dance to me was a passion. I thought that I could always go back to it at any point in my life. I never thought I would end up so sick that I couldn't actually dance again. Because it was such a passion of mine the thought of never being able to dance again was a serious loss for me. I went through all the stages of grief before I could accept that I could not ever be a professional ballerina.

Lately, since my medication regimen has been working pretty well for me, I have been feeling pretty good. I have reached a point where I felt like attempting an exercise routine. I have still been struggling with fatigue, but for the most part, I've been feeling well enough to start "moving." I began with swimming laps, added a water aerobic class, also started doing yoga and pilates at home, I bought some small light hand weights and ankle weights, I purchases a shake weight, and I felt really fine doing it all. It seems to give me more energy every time I exercise, especially the more challenging work-outs like the water aerobic class. I take it on Tuesdays, Thursdays and Saturdays. I decided it was time to add a dance class...

A facebook friend of mine teaches a Nia movement class on Tuesdays and Friday nights at an all ladies gym near my home. It is a South African Dance/Movement class that focuses on balance and movement. It is a lot like Tai Chi, where you switch from balancing in one position to another or one side of the body to another side, incorporating the healing arts with it. I loved it so much! I felt the music inside me just like I did when I was a ballerina! I felt like I was a dancer again. I am so thankful for this class because it is so easy on my joints, and I really work up a sweat!

Then I found out about a belly dancng class near my house. I decided to push myself a little further. I went for the first time last week. It was at another apartment complex in their clubhouse. There were 5 students and the instructor. Everyone had a coin scarf around their waste except me because I missed the first class so I hadn't purchased one yet. Three of the students and the instructor had a belly-bearing top. I chose not to bear my belly. The thing about belly dancing is that you really use a lot of the hips and the belly as well as the arms. They worked on arms the first week that I missed, so the week I started was to focus on the hips. Of course it was! Now I have arthritis and avascular necrosis with a total hip replacement of the left hip, and my right hip is partially collapsed. Are you started to see why belly dancing was funny?

We began with the vertical and horizontal figure 8's, then the hip lifts and hip shimmies and finally the leg shimmies. Everytime I tried to do anything with my hips, I moved my knees. You are supposed to separate the two and have the hips move as one unit by themselves. I would laugh so hard because no matter how hard I tried, I could not separate the two. The instructor even would laugh with me. She said to bend my knees slightly, and that should help. It didn't. She came up to me and placed her hands on my hips to try to help me move them without moving my knees. She said it would take practice, but I will eventually get it. Every new hip movement, those darn knees would move right along with the hips. It was crazy. I didn't get mad at myself, but rather I would laugh uncontrollably. The laughter was contagious because everyone would laugh with me as I tried so hard. Then when we finally were taught the leg shimmies, she said that this was the only time we were not to move our hips, but focus on the knees and move them in and out to make it look as though our bodies were vibrating. She looked at me, laughed, and jokingly (yet seriously) said I should be able to do this one because I can actually move my knees. I began to move my knees, started to speed them up...faster and faster. I was doing it! Everyone was laughing louder than before because I was doing it perfectly, and no one else could do it!!!!!!!!!!

After class, I paid my fee, bought my coin scarf and a CD of music to practice with. I told the instructor how much I enjoyed the class. I said that it was challenging, I knew it would be, but I love a good challenge. I said that I love to dance and that I was a professional ballerina years ago. It is nice to get back to dancing. I said I know I am struggling a bit, but I will practice everyday. I promise. I told her that I am struggling with the hips and knees being connected I think because my left hip is replaced and my right hip is partially collapsed. She looked at me with a surprised look on my face. I said that it was OK to laugh with me. I wouldn't take a class if I couldn't laugh at myself. I like a class where I can poke fun at myself and be a normal person. I am having so much fun dancing again. I may not ever look like the perfect belly dancer, but I am having a lot of fun doing it. I know I look funny doing it too, but it's all part of the fun of it. It's OK to laugh with me. Don't stop laughing on my account. After all, I'm a person with chronic pain and several joint and mobility diseases, and I'm taking belly dancing classes. That sentence alone deserves a laugh!

Monday, September 20, 2010

OMG! You're Gonna Stick That Needle Where?

The theme of the 13th Chronic Babe's Blog Carnival is: how do you handle a crisis? There are always times when things go terribly wrong with your health or a personal issue no matter how hard you try to take care of yourself. In this blog carnival, we are going to blog about how we prepare for such turn of events, how we cope in the middle of everything, and how we recover from it.

A crisis is a crucial or decisive point or situation; a turning point, an unstable condition, involving an impending abrupt or decisive change, a sudden change in the course of a disease or illness, toward either improvement or deterioration, an emotionally stressful event or traumatic change in a person's life, a point when a conflict reaches its highest tension and must be resolved. Synonyms for crisis are: crossroad, head, juncture, pass.

This is a very easy topic for me because I'm in somewhat of a crisis right now with my health. I was doing really well, and had begun to go to the gym to an aqua aerobics class 3 times a week, swim, and picked up a dance/movement class called Nia. I have also been doing beginner's yoga/pilates, light aerobics, and light weight training at home with workout videos. I really was really great--well for me; it's all relative. And just as quickly as I began feeling well and taking advantage of it, I started feeling tired, fatigued and having pain and stiffness. Yes, it's true; I had begun to have a flare two weeks ago, and I haven't hit the upward swing yet.

For me, I can live with the pain, but the fatigue is killing me. When I wake up in the morning, which is bright and early--about 6:30 or 7:30 a.m.--I have so much fatigue that I literally cannot physically get myself out of bed for four to six hours. That is a lot of time that I am losing each day, which is adding extra stress to my life. Of course, this isn't anything that unusual for me. I tend to have ups and downs all the time with my many chronic diseases. I just have to take it a little slower and easier for a while, and slowly increase what I do each day until I am back to my normal activity schedule.  But for some reason, this time around, I have had a flare with my fibromyalgia, sjogren's, and psoriatic arthritis. To top it off, I only have my period every three months, and this is the month that I will have my period, so I am also PMSing! I have psoriasis on my scalp, I am having muscle spasms, fatigue, bowel and bladder spasms, headaches/migraines, forgetfulness and confusion, and extremely dry mouth and eyes. I ended up getting a new prescription steroid foam for my scalp. I am on a new medication for my fibromyalgia--Savella. I began taking a migraine medication again--Topamax. I had to go to my eye doctor because of scleritis. I had silicone tear duct plugs placed in my eyes two days ago to help to keep what little tear production I have on the surface of my eyes.

Basically, for me, I have to always anticipate that a crisis with my health could be awaiting me around the next corner. It is one of the main reasons why I cannot go back to work because I could need another joint replacement at any moment. After all, that is how this whole blogging thing got started in the first place. I had my right shoulder replaced in March, and although I knew that both shoulders were in extremely bad shape, I would have never thought that my shoulder would collapse ahead of my other hip or one of my knees. And yet, it did. If I had taken a job here in Atlanta, I would have had to quit by now, and we hadn't even been here four years.  So as you can see, planning and foreshadowing what could and will happen next is the only way that I can live my life. So I have a doctor for every single part of my body. I plan trips accordingly. I make sure that I get my Remicade infusion just before a trip so I have more energy. I make sure that I get all my prescriptions filled before I leave to go out of town. I check out every new symptom immediately, and everything that has changed as soon as possible even if I think it might not be anything at all.

This is important because with my eyes for example, I made an appointment with my cornea specialist when I felt like I was getting a sore on my cornea. I have a history of uveitis, iritis and scleritis because of the sjogren's and the psoriatic arthritis. My eyes have been especially dry lately, and I have had to use not only the Restasis twice a day, but also artificial tears during the day and eye ointment to lubricate my eyes at night. Well since May, they have been exceptionally dry, but in the last couple weeks, they have been scratchy, sore, the vision was a bit blurry and even looked as though they had a spot on each one of their white areas. So I felt it was time to see the doctor. It turned out that they were much drier than they were previously in May. They did have a spot on each eye in the sclera, or white part, and the doctor ended up placing silicone tear duct plugs in each eye right there in the office chair. I didn't know they did it right there. She came back in the exam room with a tray, gloves and a needle and the instrument to place the plugs. I said "you're gonna put that needle where?" She actually put a needle into the tear duct to numb it and then placed the plug into the tiny tear duct in the right eye, and then the left eye. I WAS SCARED OUT OF MY MIND! I was at the appointment all by myself, and at that moment, I wished that Jim was there to hold my hand. I kept thinking, "what if she slips?" It went without any problems. She told me that if this didn't work, they would have to place a specially designed contact to cover the white part of my eye only to keep it moist, or to take the serum from my blood and use it as my own natural tears to keep my eyes lubricated, or the last resort is a cornea transplant if all else fails. For now, I am using my Restasis four times a day instead of two, artificial tears and gel tears during the day, as well as the eye ointment to lubricate my eyes while I sleep. I need to wear large sunglasses to keep the wind and sun out of my eyes and avoid breezes--stay away from fans and vents. It's scary stuff, and I'm not even sure that what's been done so far is helping.

I believe that being ahead of the game, knowing that a flare or anything else unexpected could be awaiting around any corner up ahead, is the only way to live my life. I keep a journal, and write everything in it about how I feel that day--pain, fatigue, and symptoms. I usually can see a pattern just before all hell breaks loose. I did notice that at first I was able to exercise 30 to 60 minutes 5 days a week with no problems except my normal pain issues. I began eating better and going to bed at a more reasonable time. So the exercise caused me to be more healthy in other aspects in my life, and in turn I felt more healthy, so I exercised even more. But then I began to slow down, I was able to notice the fatigue first in my journal, so I took it easy on the exercise, and I took some of it out for the week so that I wasn't overdoing it. Then I noticed that my sleep pattern got messed up again, which caused me to have more pain, and then which in turn made me begin to start eating at odd hours. It is a never-ending circle of events.

Hopefully, if we can get the scleritis and dry eye situation under control, I think that I am on my way out of this crisis though. Today, even on a methotrexate day, I played kickball, and yesterday was my aqua aerobics class. So I was able to do a couple days of exercise in a row, and I'm getting my blog post finished on time--well let's hope--for the blog carnival!

Monday, August 23, 2010

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!!!

Sunday, August 15, 2010

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!


Wednesday, August 4, 2010

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!

Sunday, July 25, 2010

The Big Breakdown: When Everything Goes to Hell, What Do I Do?

This is a post from the next ChronicBabe Blog Carnival (publish date: July 27, 2010), and the theme is: The Big Breakdown: When Everything Goes to Hell, What Do We Do?  How do you handle yourself when everything feels like a disaster? How do you get though it and come out the other end a stronger woman?

Ok, first of all, I'd like to say that I think I have pretty good coping mechanisms, and that I can handle disasters pretty well, so when I saw the topic I didn't think it would be that difficult to write about it.  Then when it came down to it, I stared at my laptop for a good 20-25 minutes before anything came to mind. I had no idea what to say about it really. Truth be told, it doesn't really take too much for a person with a chronic illness, especially one that involves pain, and widespread pain especially, to have a breakdown. Now, I don't mean a full-fledged breakdown like you hear about people having in their mid-life--a mid-life crisis--nothing like that at all, but it doesn't take much to send our lives into a tailspin.

For me, I no longer work because I'm on disability, but I do lots of volunteer work because I am a Type A personality, over-achiever, control freak, always-has-to-be-busy-kind-of-gal.  So normally 2 to 3 days of the week I'm doing some sort of volunteer work outside the home plus whatever work is required of me to do from my couch and my laptop.  I have two dogs. One dog, Max, is blind, has diabetes, Cushing's and 3 legs, and is 13 years old. The other dog, Cookie, has fear-aggression issues because he was attacked by a dog that got into our apartment when I opened the door to take them outside. Now he is so afraid of all other dogs that he feels he needs to attack them before they get to him first! So I take them outside during the day one at a time to prevent any problems. This way I can keep total leash control over Cookie in case another dog is around, and Max has my undivided attention so he doesn't fall off the curb and get hit by a car or wander off somewhere where I can't get to him.  We always eat at home, so I always make a home-cooked dinner. I do the cleaning, minus the vacuuming and high reaching.  We are in the process of adopting a baby, and if you know of anyone that has done this before, you have to always be on top of things--paperwork, profiles, and being ready at all times for "the call."  Also, you would know that the woman tends to be the one that keeps it all in order. I order more copies of our profiles, I keep the home study up-to-date, and I make sure that the adoption website is up and running. He just assumes all of this just "happens" magically.

OK, now throw in doctor appointments, physical therapy, dental appointments, oil changes for the car, a pedicure (possibly if a friend comes to visit for something fun and girly to do), a haircut, dyeing your hair (I actually do it myself), arching your eyebrows (I also do it myself), grocery shopping, shopping for shoes (the kind that you have to buy because the flip flops are killing your feet, and you just can't deal with the pain anymore even though you have 300 flip flops in every color, and you absolutely love the convenience and cuteness factor of them), veterinary appointments for the dogs, and trips to visit family (because you're the only ones in the family that live out of town, and it falls on you to visit them instead of them to visit you).

So see where I'm at now! Things are starting to feel crazy, but this is stuff that is not too far off the normal stress charts for other people. OK, so now let's throw in a couple staff parties for my hubby that I have to go to with him. And.....hmmm.....let's also say there is a birthday party in there for a friend to go to dinner and listen to a band play or a movie or bowling or go to a bar...you get the picture. Now let's throw in the fact that there is a big event with the Young Professionals Group that I Chair; let's say the Arthritis Walk Atlanta.  Let's also say that not that many members actually show up at the Walk, and that leaves more work for the few of us there. On top of that, oh let's throw in a fibromyalgia flare.  Let's say there was a huge storm that blew in...OMG!  Thunderstorms and fibro do not mix!!!! Now let's say that I had to miss my Remicade infusion because I ended up getting a cough from an allergic reaction to feather pillows (true story), so I had to wait a whole week later to get it. Now we'll throw in an arthritis flare on top of it; oh and my arthritis is psoriatic arthritis, so my psoriasis flared too!!!!!  Then, my parotid glands swelled up to look like I had mumps because of my Sjogren's! We had finished making a video for our adoption website, so I had to work on editing that, with all my flares and other responsibilities of life....

For me, I have all these conditions, and on top of that, I've had 9 surgeries! Most recently, in March, I had a shoulder replacement at the age of 35. Imagine going through all of the above while recovering from shoulder replacement surgery!  Add to that, the stress that they could call at any moment saying they have a baby ready for you!  Going through rehab is hard enough, but with fibro and arthritis, and now migraines on top of it, I have been to hell and back!

So what do I do with that...well I reach a breaking point of course!  There is only so much that the human body can withstand.  All of that is too much!  And in reality, it only takes a swollen knee or elbow to have to cancel a night out with friends. You only need rain in the forecast to cause a flare for your fibro, and your whole week could be shot--don't even think about those plans to clean out your closet! HA! I say to that!

So what do I do to prevent a breakdown? What are my coping strategies?  Well, I am very obsessive-compulsive, so I make tons of lists and have a calendar in my purse, on my fridge, on my wall by my desk, on my phone, and on my laptop. I make sure that every single calendar is updated regularly--as soon as an appointment is added. I also have a running task list on google and on a notepad in my purse and on post-its. I prioritize them by what has to be done today, tomorrow, this week, next week, this month, next month, within 3 months, within 6 months, within 9 months, and within the year. And daily, I update the priorities. I know it sounds like a lot, but if I don't do this, my foggy brain gets confused, mixed-up, unable to concentrate, depressed, anxious, nervous, and everything that I have to do seems huge and like it could never get done. That is when I totally freak out!!!!

A couple weeks ago, for instance, I was extremely foggy and could hardly concentrate on normal daily tasks. I had a dental appointment, and when I returned to my car in the parking lot, the car door was wide open. I forgot to shut my car door!!! OMG! I thought I was totally losing my mind. On this particular day, I had a list of things to do that were not prioritized. My hubby asked me to make some errands for him after my dental appointment. I put everything that I needed to do in a bag in the front seat of the car (except the bank deposit--which I placed in my purse thank God).  I did my errands, still trying to remember how I could have forgotten to close my car door--I did however lock it. Thank goodness I did that because that surely kept the robbers away! I finally got home, mentally exhausted, only to find my apartment door ajar! Yes, I left my home, and just let the door fall gently closed behind me without a thought. I didn't pull it all the way closed or lock it! I just went to my car with my bag-full of errands to run after my appointment, already stressing over it because I didn't have it well-planned out like I usually do!

So that is why all the calendars, notepads, task-lists and post-its are so important to me!!! They literally keep my mind intact!

So that is one coping mechanism--I guess I can call it organization or scheduling or just obsessing and compulsing!

I also make sure that I begin to treat my pain immediately. I cannot push myself through the pain. I am a strong person, but I don't feel that shows strength at all. I think that shows that your body is telling you to slow down--listen to it. Rest, take pain meds if you have to. Take a warm bath, meditate, relax...listen to mood music, maybe do light exercise. I actually like swimming when I first feel pain coming on, not when it is full-blown, but just at the first sign. It releases endorphins and makes me feel better fast.

One really big coping mechanism is talking about what is going on. Write it down if you don't feel comfortable talking about it to another person. I started blogging for that very reason!  I joined ChronicBabe and other social networks for those who are chronically ill or in chronic pain. I have lots of friends who share my illnesses or illnesses like them to be able to talk to them about it.  On facebook, a good 90% of my friends are those with chronic illnesses. It is great to have that support! I think that it is definitely needed!

I also see a counselor/therapist regularly. I was going weekly, well until my insurance said I have to go every other week. So now I go every other week. I look forward to seeing Suzanne. There is a healing process that goes on when you talk to someone that isn't a friend or a family member, but rather, is a professional person. She isn't going to walk into another room; she isn't going to think you are being self-centered always talking about ME, ME, ME!  I always feel so good when I leave her office! If you haven't gone before, go now--go before you reach that breakdown. That is what I suggest.

Also, pray, pray, pray!  No matter what religious or spiritual belief system you have, pray to your higher power. I pray to God My Mother and God My Father! I pray for strength when I think there is no way that I can find it, courage when I think I can't take one more step, and I pray to learn from my own experiences as well as from the experiences of others. Afterall, if we aren't here to learn, and in turn to use that knowledge to help others with similar problems, situations and concerns, then what the heck are we here for?

That is how I come out a stronger person in the end, after all is said and done. After all of life's stresses, and my body's working against me, and when people wonder just how I'm gonna be able to do it yet again, I do!

We are all WARRIORS!!!!

God grant me the Serenity to accept the things I cannot change,
    The Courage to change the things I can,
          And the Wisdom to know the difference!

Walk Team

Walk Team





Belly Dance

Belly Dance
Before the Performance 5/6/12
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