My Take on Marriage, Love, And That Confusing Little--No Wait, BIG Thing--That Gets in The Way; Chronic Illness

(This post was presented in  ChronicBabe Blog Carnival #2: Love, Illness and Other Confusing Things on April 20, 2010.  It was the second edition of the ChronicBabe Blog Carnival, "bringing you a big new batch of awesomely babelicious perspectives on love, sex, relationships and chronic illness...working "hard with co-organizer Fibrochondriac to create a real diversity of writing; in fact, she does a lot of the work, Babes, so we owe her a BIG thank you.")

My mom always told me that marriage isn't easy.  You have to work at it--both of you.  Of course if you have to work too hard, I'm not sure the marriage is worth it, but sometimes within the marriage there are challenges that take every bit of your strength, determination, and perseverence. If one of you has a chronic disease, you know what I'm talking about.  With the chronic disease living inside the marriage, sometimes the marriage itself doesn't get the work it needs because so much time is invested in the disease, that there is little time for anything else.

I'm going to talk about my marriage to my loving husband Jim, how we work through the chronic disease challenges as well as day to day issues that affect every married couple.  First of all, just so you know that we have experienced married life for a while with lots of unexpected events, I'll start there, then I'll add the chronic stuff to it and tell you how we handled it as partners.  We will be married 10 years on June 10, 2010. We dated for 6 1/2 years and lived together for 2 of those years before getting married. We have lived in St. Louis, MO; Lexington, KY; N. Providence, RI; and Decatur, GA.  We have had our two senior dogs for 10 years (Max, 13; Cookie, 10). They have lived in every city with us. We have been trying to adopt a child for 5 years now, since we were living in Kentucky.  We currently have no children.  We both went to college, having met as undergrads.  Jim went on to Graduate School to get his Ph.D. He is now a professor. I got my Bachelor's in Nursing.  I worked as a Registered Nurse, and my specialty was a Diabetes Educator.  I am now on disability, which is reviewed every 3 years in Georgia.

We met in college, had the same values, beliefs and religion. Our families were both huge and lived in the same part of St. Louis. Everything started out to seem like a storybook romance and life together.  For the purpose of my blog, throw out any idea you may have in your mind that life with that special someone is going to be like s storybook romance. It ain't happening!  I've said this before in my other blog--"you had me at hello" is only in the movies.

Ask yourself what causes stress in a marriage. Main stressors are finances, kids, work, moving into a new house or a new state/city, losing your job/changing jobs, school, death, and a new baby.  There are others, but you get the idea.  There is one big stressor that I didn't mention on purpose because for many, it causes so much stress that the other stressors pale in comparison, or the other stressors become even more stressful because of it.  That stressor is the big thing that gets in the way within our marriage--that thing is chronic illness.

I can honestly say no matter what seems to be going on at a particular point in our marriage, chronic illness finds a way of forcing its way between us. When we said our vows, we said, "in sickness and in health," but seriously, we never asked for this...

Chronic illness always has to be centerstage. It doesn't care if you've planned a trip for months, decided to accept a promotion with more hours, or if now is the time you and your significant other have decided to start that forever talked about family.  There are so many times that I am feeling great (remember it's all relative), and Jim has a huge work dinner or party. It is gonna take every bit of energy that I can find to over-power that chronic illness this time around.  No matter how many times it comes between us in our marriage, we are just never prepared enough for it. It is depressing, overwhelming, and just makes me so angry sometimes.

We have always wanted children, but were never able to try because of my chronic illness being in the way all the time. Then, 5 years ago, we began the adoption process because chronic illness had gotten so in the way, that my body cannot even carry a child to term now. My joints are just too damaged. Thanks again, chronic illness for your time.  I don't think, unless you actually have a chronic illness, that it is understood how much of a part of the marriage chronic illness is...Let's see, how can I really get this across to you?...

We moved away from our families in 2002. We were the first of both of our families to leave, and we moved to a city where we didn't know anyone.  We were so excited, but chronic illness showed its ugly head so strongly then, that you have to wonder if it has a mind of its own...We had no one there to help us. I had 6 surgeries in our time in that city with just my husband, myself, and chronic illness. One of those surgeries was a total hip replacement. I was 29 years old...

I tell people constantly that having a chronic illness in our marriage only made ours stronger. We only had each other to lean on. By leaning on each other, our marriage became so powerful, and we realized we had chronic disease just where we wanted it. We could do it because we loved each other enough to overcome any of the obstacles that chronic disease threw us. I have written in some of my other posts how humorous it was to have Jim help me recover from a hip replacement. He would bathe me, shave my legs, and wash my hair. I have many of my hip replacement antics in my other posts. I figure, if you can't laugh at yourself, what are you gonna do, cry?  Well, I didn't feel like crying at that point in my life.  We were just beginning this new chapter in our life together, and I wanted it to be a comedy and not a tragedy.  I figure there is nothing wrong with that.  You realize how much that person you are with really loves you, or doesn't for that matter. I know that Jim loves me, otherwise, he would have left me in Kentucky back when I was 29. I would have been OK though. I had a brand new hip, and I am a positive person. I'm glad we stuck it out together though. We only got stronger, but so did chronic disease, only to keep taking more and more of my joints.

Now I just went through a shoulder replacement. It hasn't even been a month. It's been about 3 weeks since my surgery. I'm doing OK, but I'm not as young as my last surgery, and really not as young as my last joint replacement. I'm 35 now!  Wow! I feel like so much has changed, but when people look in from the outside, they may not see it like we do from inside.  We still have the same dogs since before we were married, no kids, and we look almost exactly the same as the day we walked down the aisle.  But ya know we have changed so much. We are so strong, so much more than we were before chronic disease really gave us a run for our money.  Although I didn't actually get a diagnosis until 2002, I had been sick since I was a child. I missed a lot of school, had a horrible immune system, and always had problems staying well. But after we got married and moved away, chronic disease just seemed to try really hard to be the third wheel in our marriage.

This time is a lot tougher on our marriage, I can't lie. We are in an apartment and not a house this time around. I don't like Atlanta as much as I liked Lexington, KY and N. Providence, RI, so I'm not as happy or as content. We seem to be taking on so much. Jim is working all the time. He leaves early and comes home late. I do a lot of the housework and cooking. I take care of the dogs, and they are getting old and need a lot more care. I am involved in volunteer work at a pregnancy center and at the local Arthritis Foundation. My medications are so expensive, and I have to fill them every month, as well as go every 4 weeks to the infusion center for an I.V. We are at the waiting stage for the adoption this time around. We have never gotten this far along. On top of all of that, I'm about 3 weeks out of a shoulder replacement surgery. My right shoulder collapsed the day before Halloween. I woke up that morning, and couldn't move my right arm at all. I knew what had happened. It had happened before to my left hip, but again, we just weren't ready for it to happen at this stage of the game, ya know.  So, we had my mother-in-law come before my surgery to help out with cleaning, laundry, dishes, the dogs, etc. before my surgery. Then while I was in the hospital, she got the place all ready for me to come home. I came home to a gorgeous home--clean and organized, and she had let the dogs out every 2 hours besides. She left the day I came home, and then my parents arrived 2 days later to help out.

One thing you need to know is: don't sweat the small stuff. It's so true. I have been so worried about my home being so messy, dishes in the sink, laundry not washed, and things in the wrong place.  I don't think anyone else cares about it but me, so why be so worried about it. So I've let it go. Yes, I with OCD, who has to always be in control, etc., has let it all go.  I should know better, actually. When you have chronic illness in your life and in your marriage, you are not always in control. Sometimes it runs the show. Sometimes it decides that today you stay in bed, tomorrow you might be able to put some clothes on, etc.  That's how it is with chronic disease--so you better be ready to drop everything and cancel at the last minute, and order in instead of cooking, and go one more day in your PJ's because you just can't get around to getting dressed again.

So back to love in our marriage...You know love is there when your significant other is still there pushing through the rough times with you and chronic disease. You know he loves you when he makes sure you feel OK, when he still asks even though he knows you feel like crap. You know he loves you when he asks you all the time if you need anything.  With this crazy busy time in our life right now, I still know he loves me...He always comes home to me no matter what...He didn't leave me when he knew I was gonna have another joint replacement, and I know he didn't fancy the recovery period of the first one. I know he loves me because he comes home and finds time to do the laundry when he can, washes the dishes before they cover up the countertop, vaccuums the carpet when the leaves and flowers are brought in on our shoes and on the dogs paws, feeds the dogs twice a day everyday and gives Max his insulin after each meal--he's even getting more patient with the dogs because he knows I want him to be. Let's face it, all you people out there with chronic illness that stay home all the time, we have a lot of work to do without having a job, so when he comes home late every evening and then does my housework, I know it's not easy for him.

Also, with the shoulder replacement, I've been sleeping on the couch since I got home. It is just more comfortable for me because I can sleep sitting up. In bed, I lay too flat...He misses me sleeping next to him in bed. I miss him too. It is lonely when you have slept next to someone for all these years, and suddenly you find yourself alone.  Well, the dogs sleep next to me, so I'm not completely alone, but you get my point...

I know he loves me because he does my arm exercises with me. He gets up in the middle of the night to check on me because he thought he heard me walking around.  He takes me to all my doctor appointments. He drives slowly over bumps and potholes so that my shoulder doesn't hurt. I just know that he loves me.

Still, everyday we can't help but look chronic disease dead in the face. I have a 5 inch long incision going down my arm from my shoulder replacement. I don't even think about what it will end up looking like when it heals becaue I already have 3 scars on my legs, 4 other scars on my shoulders, and 5 little scars from my gallbladder. I don't even think about the marks that chronic disease has left to remember it by. I wonder if he does though...I wonder if he thinks about my untouched body that he originally fell in love with...Do all these surgery marks take any of that attraction away? It doesn't seem like it to me. It seems like he just loves ME!

It does seem like times are a lot more trying right now for us in our lives. Adding chronic illness to it only makes it that much harder to deal with normal marriage issues and concerns.  For instance, it is so much harder to deal with an adoption homestudy when you have a chronic illness. You want so badly to show that you are going to be good parents and that you will have no problems taking care of a child. The truth is, I'm scared to death about having a child. We know that is what we want...That is the way we have always seen it, and we won't feel fulfilled without a family.  It won't be a real family without a child or two.  I'm just scared that I will be seen as not good enough to be a mother because of chronic illness. We have overcome so much in our lives not in spite of chronic illness but because of chronic illness...I think that says a lot for any kind of relationship. If you love someone enough, you will make it work together. That goes for a marriage, as well as other relationships, including special friends.

Since I mentioned these special friends, I'd like to say that because of these special friends, we have gotten through some difficult patches as well. Since my surgery, I have spent a lot of days home alone while Jim is at work. These wonderful friends, of whom I love, have brought meals and treats and flowers and taken me out of the house and just came to visit and talk with me for hours and hours.  Thank God for those that love us!

Again, I stress, we do not overcome so much in our lives in spite of chronic illness but because of chronic illness...I think that says a lot for any kind of relationsip when chronic illness is a part of it!

Pain, Fatigue, Sleep...

I must admit that the medication that I'm taking for pain is really controlling the pain. I begin to feel the post-surgical pain 4 hours after I take my pain meds. They are prescribed every 12 hours and every 6 hours. The pain that I feel after 4 hours is not the same as the pre-op pain that I felt from the AVN where the joint collapsed.  It is where there are bruises and at the incision.

The deep bone pain is completely gone!  The same thing happened when I had my hip replacement. The deep bone pain was gone immediately after the hip was replaced.

So I must say, overall, I would say that I'm happy with the pain control.

I am very tired and fatigued. I really need to use this week to get plenty of rest and caught up on my sleep. I'm sleeping well at night as well, which has been a long while since I did that.

I was due to have my IV infusion this Thursday, but have to wait another week to give my body an extra week to heal. That will be kind of tough because my body knows and feels it's ready for the infusion.

I see my surgeon on Monday, and I get my bandage taken off and my order for PT.

Until then, I will continue to wear my sling while I sleep and go out and take it off when I'm at home.  I'll do my exercises 3 times a day that were taught to me at the hospital.

I am getting a little better every day...

Visitors...

I just have to say that my parents left yesterday after staying with us for 3 nights. My mother-in-law had been here for 5 nights prior to my parents coming as well. She came 3 days before my surgery, and left when I got home from the hospital.  I had our place totally clean and organized, ready for people to visit as well as for me to come home, knowing that it will be a while before I can really clean like that. She was wonderful!  She helped with the dogs, did the laundry, the dishes, and cleaned the entire house until it was spotless!  When I returned from the hospital, she helped me to change into comfy PJ's and made sure everything was ready for me while I was home since she was leaving that afternoon. She even had already washed and folded her sheets that she slept on.  While I was in the hospital, she took the dogs out every 2 hours, made sure they always had water, cleaned everything (even what was already clean), went into our bedroom and looked for clothes to wash and did loads of laundry and folded or hung them up, so like I said before, she left our place sparkling clean. I really have to thank her lots and lots. I wish she could come back, actually.

My parents came then. My parents had so much fun while visiting. They enjoyed their vacation. They had us take pictures of them in front of our flowering tree outside that they just fell in love with.  But they were only here from Friday at 3:30 p.m. to Monday at 9:30 a.m.  They were really only here 2 full days!
We went out to eat for almost every meal, went to every shopping center/mall, went out for ice cream, and we drove all over showing them around the area where we live. I went back on my chemotherapy medication that I take on Sundays, so I'm back to watching what I eat so I don't get sick.

Yes, I was able to do all those things with them, but I believe if no one came at all, I wouldn't have gone out to those places at all. I am so exhausted that yesterday and today all I've done is lay around and rest or sleep.  Since I have psoriatic arthritis and fibromyalgia besides the avascular necrosis that led to my shoulder replacement, now I am totally flaring. I overdid it. There is no other way to put it. I can't even put it any simpler. My parents don't see me but maybe a couple times a year though.  So they don't realize how sick I am. They don't understand that with chronic illnesses, we don't complain because it is what we live with day in and day out. So yes, a lot of times I will push myself even harder around people that don't see me as often. For my mom especially, everytime she sees me, she thinks I'm doing great and tells that to anyone and everyone.

I need to just stop and rest now.

So my mom said thanks for making her trip so enjoyable. When they were packing their car to leave yesterday morning, my mom said that she didn't think they ended up being much help. She said that she thought they were a good "distraction" from the pain and the side effects from the pain meds.  I didn't change out of my PJ's. I lay on the couch while Jim walked them out to the car.

I just wanted to cry.

I have been trying to get some laundry done today--8 days since surgery--but I have to do very small loads since I can only use one arm.

I sit here trying so hard to keep from.................................................................... CRYING!

This Time I Really Did Give My Right Arm...At Least My Right Shoulder...

Well yesterday morn, I had a humeral head replacement surgery at Piedmont Hospital in Atlanta, GA.  The surgery lasted 2 hours. I did fine in recovery, and got to my room around 3 pm. They gave me a nerve block in that arm, along w/ general anesthesia.  I actually fely no pain yesterday, the day of surgery...of course, I knew it would be short lived. I was told by my surgeon that a normal sized adult who has a nerve block like I had, would have it wear off by midnight.  He said that for me though, since I'm so small, it probably wouldn't wear off until 2 a.m. Well, I proved him wrong.  My block wore off at 10:30 p.m.!!! That just goes to show you that when you take as many drugs as I do, your tolerance for those kinds of drugs goes up.  It truly is amazing.

So today, I woke up and thought, "who the hell beat the f*@& out of me in my sleep?"  It was a complete 180!

Today, I had 2 shots of morphine in my ass, oxycontin 20mg 12 hours apart, and 10mg of oxycodone every 3 to 4 hours.  It has been tough!  My doc changed my dressing and thought it would be a hoot to move my shoulder in a complete circular rotation!! WTF!!! Then P.T. came to work on my exercises!  Again WTF!!!

This is supposed to be the worst day--the day after surgery--2nd post-op day!!! I've almost made it through.  Tomorrow is another day!

I Ask God Today For Strength...Oh, And By The Way, Could You Also Take My Pain Away If You Have The Time?

Oh my, it is one of those days, where it hurts too badly to get out of bad, but too much to stay in bed!  I HATE these kind of days.  Why am I having a day like this, on a day like this?  It seems like it is going to be a gorgeous day today.  The sun is shining, the air is still, and it isn't as cold as it's been lately. And yet, I am having THE WORST DAY that I've had in a long time.

Ya know, on a day like this, the first part of my day is to ask my God to please give me strength. To ask for strength is a big thing.  I need strength to get out of bed, to get myself dressed, to take the fur kids outside, to bend over to clean up after them outside, to feed them, to draw up Max's insulin, to inject his insulin, to make my breakfast, to clean off my plate, and to get myself to look at least "presentable" before I step out the door to face the day.  I ask God for strength as I try to hold my throbbing hands on the steering wheel. I ask for strength as I feel the tears build up, when I realize I can't reach with my right arm to change the radio station. I forgot for a brief moment, as I do sometimes first thing in the morning, that my right shoulder had collapsed. I ask God to give me strength as a small amount of anxiety begins to build up inside of me as I remember that in 5 days, I am going to have a very serious and invasive shoulder replacement surgery. I take a deep cleansing breath, and suddenly realize that today is one of thoe days that I definitely need 2 deep cleansing breaths, so I allow myself to take another. And I put the car in drive and off I go to start my day!

Strength is an important power to have over yourself, your day, your body, (I tend to separate myself from my body, especially on very painful days, because I am not my disease, and my disease has taken over my body, but it has not taken over ME!) what you say, what you do, and what you choose in life or just on a particular day or moment.  Strength is a wonderful power and quality to attain.  I believe you don't just have strength. You have to work for it, ask for it, and be rewarded with it.  God will give it to you, but it will not be handed to you wrapped in a pretty box.  In order to get strength, you must be faced with struggles, fears, or something that you have to face head-on.  If you are able to overcome it, fight it and win, or walk away without avoiding it, you have gracefully accepted the gift of strength.

Today, I am moving, and continuing with my day head-on! I am not giving up. I am not crawling into bed and whining about the pain.  I am taking a hot bath, exercising my joints, praying to God, massaging my joints,etc. I am trying to overcome my worst enemy--PAIN.  I know that by the end of the day, I will have received a beautiful package from God with love filled with strength, that I worked so hard to receive.

So when I ask for God to also take the pain away if he has the time, eventually, the pain does get better. I know that if I stay strong and stand up to the pain, it will go into hiding.  I like to add a little humor, even talking with God. I am not a God-fearing person. I believe that he is a humorous God.  I think that a good laugh always help to get rid of some of the pain, and God can always join in the laughter.  God is always with me, and we are great friends. He is my father, my brother, my friend. She is my mother, my sister, my friend as well. I see God as a Father figure as a male, but I also see God as a female. I tend to pray to God, the female when I need help in an emotional sense. If I need help with a family problem, with self-discovery and spirituality, and things that are more personal, God is a female to me. When I ask for strength to get through pain and discomfort or something that I would ask my dad for help with, I see God as a male.  So for help with the whole pain and strength, I see God as a father-figure.  When I want to just talk to someone, for encouragement and love, I talk to my female friend, God. But God as a whole is humorous overall, and has a sense of humor.

How to Cope When Things Get Too Painful/Overwhelming!

Today, I woke up at 6am to give my one furkid a drink and take him outside. I've been having to devote so much of my extra time and energy to taking care of him (which already is not a whole lot to be handing out). Max is his name.  We didn't name him; he already had his name when we adopted him. He is a Silky Terrier, and he looked like a big Yorkie (well all 13 pounds of him). We were told that he was 3 years old when we adopted him in Nov. of 2000, right after we got married.  We already had a 9 month old puppy at home, Cookie (a Jack Russell, Beagle, Spaniel mix). I wanted to get him a friend, a companion, a brother.  Max was hit by a car 6 months before we adopted him, and had his back leg amputated. When we got to PetCo, Max was in a cage all alone, and no one was even looking at him.  We ran to his cage (my mother-in-law and myself), the rescue group volunteer came up to see if we needed any help. I said I had read all about Max in the newspaper and that I was there to adopt him.  They looked at me all surprised. You don't want a puppy?  Nope, I wanted Max...Max had went through 12 foster homes, and he was ready to come home, to our home, where he belonged...

Max remained perfectly healthy until 2007, when he developed Cushing's disease--an auto-immune disease that affects the adrenal glands.  It causes the adrenal glands to produce too much cortisol.  Cortisol is a hormone, a steroid. It is like he is on steroids all the time--constant hunger, thirst, change in behavior, etc.  He was started on a medication that was like a chemotherapy drug. It basically attacks the adrenal glands. If it attacks them too much, it can obliterate them.  Exactly one year ago, he went into remission. No one knew why.  We stopped the meds, and he was doing great.  Then, in Nov. of 2009, he began to have accidents in the house. I took him for an urine test at the vet. When they were doing the urine culture, they used an ultrasound to guide the catheter, and that is when they noticed something in his bladder.  He had bladder stones!  We scheduled for him to have surgery.  I was torn.  He was 12 years old, and had already been through so much. I wasn't sure if it was a good idea to put him under anesthesia.  I spoke with a good friend who is a vet in the city I grew up in.  She told me that he needed to get the surgery now before the stones tried to pass through the urethra and cause pain.  Then the surgery would be an emergency.  You don't want that.  So he had surgery on Nov. 20th, 2009, while we were out of town for a wedding. I was so nervous because we left him, but I thought he would actually be in the hospital longer than normal then and under their care rather than sent home. I thought that would be good.  He wouldn't know if I was out of town or just waiting at home for him.  They removed 28 stones from his bladder, which they told me would help him to be able to go potty much better and easier.

He ended up having a reaction to the staples, then 2 months later a suture reaction.  He went on antibiotics multiple times after surgery. He has had no more stones, though. Then he started having more accidents again this past month in Feb.  We took him for another urine test.  There were no stones, but sugar in his urine.  They did some blood tests, and his blood sugar level came back to be 425 (normal is 80-150).  He was diagnosed with diabetes and put on insulin shots twice a day, went blind in two weeks, could hardly walk, licked open his incision from his surgery 4 MONTHS AGO!, and was retested for Cushing's disease, which also came back as positive. I have been trying to decide what to do. He is not in any pain, and he still plays with his ball and his favoritie newspaper.  You have to carry him almost everywhere. It has been so much work for me, though, having all of my own chronic illnesses.  I really needed to make a decision...

For my own self, I began to have more fatigue, more pain.  I could hardly get out of bed to take him out in the early hours of the morning.  I could hardly carry him anywhere anymore.  I was having trouble cleaning up his accidents.  It was getting so hard, and I needed to find a better way to cope...

I needed to get more sleep.  I don't sleep at night. I could say that I don't sleep well at night, but let's face it, I don't sleep at all at night. I am in my most pain. I do my most thinking. I do my most worrying. I can never get comfortable.  The night is THE WORST. So, why not take advantage of my better times and my worst times, and use them for what they are good for.  So, since I can think best at night, I can read and write and do anything that fits into the category of reading or writing, such as blogging or emailing or surfing the web.  Then during the day, I can do some of the various household chores, and take a huge nap.  I don't work anyway, so who's gonna tell me I can't do that?   This is a great way for me to cope, use my strengths at my best times, when I'm least fatigued and have the least pain.  Sleep when I'm able, and when I can't, to hell with it. I might as well do something that I feel like doing rather than focusing on the pain at that time.  Besides, if I lie in bed at night trying to fall asleep and can't, tossing and turning, that is all I think about is how much pain I'm feeling at that moment.  And ya know taking a huge nap in the middle of the day is great because then I'm a whole lot less fatigued!

Prayer and healing go hand and hand with me and are also great coping mechanisms.  Rather I'm on the receiving end or the giving end, I always get something out of it.  Whether you use Reiki, Theta, or another form of healing.  Energy transferred from one person to another is healing!  I have been on both sides. I have been taught how to be the energy healer, and I have received energy healing.  When you are the healer, it is dependent upon the receiver on how well it will work.  So no matter if you are the giver or the receiver, it is always up to the receiver.  So every time I give,  and the receiver openly accepts the energy, I also receive a balance of energy in return.  And when I am the receiver, I graciously accept the energy.  The same goes with prayer.  When we pray, we are always thanking or asking God for something.  So we are giving thanks for something, or we are asking to receive something.  So in prayer we are giving and receiving as well. I believe that as an energy worker, I am a conduit for God's energy or his love, and He/She is sending his healing energy through me to help others who are in pain.  It is a wonderful thing!  Prayer is the same way.  We pray together or alone, bringing the power of God to us to help us here. So Prayer and energy healing are wonderful coping mechanisms.  I use them both on my dogs.  Cookie is living proof that it works. Both of his torn ACL's healed without surgery, and I was told by 5 different vets that surgery was the only way. He has no problems now.  Max's Cushing's disease originally went into remission with prayer and healing energy.  Also, now, as of 24 hours ago, Max is walking on his own, has had no more accidents, is seeing better, his sugar levels have decreased, and he is running around feeling better!  Wonderful coping mechanism!

For days that I cannot get out of my PJ's, I love to read, with a good cup of tea and honey. I prefer chamomile or Earl Grey or even a nice red tea.

I enjoy swimming at the pool at the gym. I feel like I leave my body. It is almost an alternate universe to swim.  You can visit some other posts about how I feel about swimming, but it is a wonderful way to help pain, stiffness, and fatigue. I get a jolt of energy.

I do love a nice warm bath, in the dark with just candles, especially vanilla scented candles. I don't care what season it is; vanilla is always a scent that makes me feel good!

I like to cook to cope!  I just have to be careful. One big problem I have is overdoing things. I have a history of not knowing when to stop. So if your like me, only cook something that will help you to cope and relax you, and when it starts to get painful, or you begin to feel fatigued, STOP!

I love when the sun is shining, and it's warm enough to take a walk with my dogs.  That is so relaxing to me.  I can sit on the swing in the courtyard when I get all tuckered out after the refreshing walk too!

Finally, I love to set an evening routine. I love to wash the dishes in the sink.  The warm water and the movement of my hands with the sponge and the soap bubbles feels good on my hands and wrists. I load the dishwasher, and then I wipe down the countertops, and I feel so calm and relaxed.  It's too bad that as soon as I lie down in bed, every part of my body screams in pain.  Oh well, I guess I can't do something to help me cope with everything! I think I just wasn't meant to sleep at night like everyone else!

Yikes, Only One Week Until My Shoulder Replacement Surgery!...

(This post was presented in ChronicBabe's Blog Carnival May 5, 2010 that was hosted for Patients for a Moment: What's your most laugh-out-loud illness-related experience?   Fellow ChronicBabes answered the question: "What's your most laugh-out-loud illness-related experience?")

Well, I have been seriously preparing everything for my shoulder replacement surgery next Monday--exactly one week away.  I was thinking about everything that has brought me to this point right now.  Wow, what a ride!

I remember when I told my mom that I needed my first joint replacement surgery, my left hip, in 2003, when I was 29. She was so afraid that she kept a good distance from me.  She thought that a hip replacement was a whole new prosthetic leg.  She thought that the surgeon was going to completely cut off my entire leg and fit me for a prosthesis.  She couldn't even come see me. She couldn't face me because she didn't know what to say.  When she did visit me for New Year's Eve, nine days after my total hip replacement, she started laughing in hystarics. I didn't know what to think except that she had lost it. That is when she admitted to me that she was relieved to see that when I pulled off the blankets, it was my actual, original leg under there. LOL!  She is a nutbag.  I like that word because it isn't mean, just funny. When someone does something really goofy, you can call them a nutbag, and you don't feel like you just called them something you will regret at a later date.

I remember when I first was left alone with my hip replacement and my walker. I would fix something to eat in the kitchen. Then I would try to figure out a way to bring the food into the other room...There was no way to do it with the walker.  I would try to balance a tray, or I would just try to balance a plate or bowl.  Then as I would approach the table...BOOM...the food would hit the floor. Jim would come home from work later that day to find my breakfast, lunch and dinner spilled sporadically on the floor from the kitchen to the breakfast room to the living room...

Oh, another great story was that when I actually went home from the hospital after my hip replacement, it was 2 days after my surgery, and I was sent home because it was Christmas Eve, and my orthopaedic surgeon felt sorry for me to be in the hospital for the holiday.  It was cold and snowing, and I was so weak...I had just received 2 pints of blood that morning because I was anemic, and I was already going home...truly amazing...that's modern medicine for you...So, Jim pulls the car up to the entrance of the hospital, and the nurse wheels me out to the car. They very carefully slid me into the back seat without bending my left leg.  Well, while Jim was working on getting me in the car, he had leaned my walker against the wall of the building.  He closed the back door, asked if I was OK, and I weakly said yes. We drove all the way home, taking about 45 minutes in the snow, while I was feeling woozy all the way there. As we pulled into the driveway, I couldn't wait to get into the bed and lie down again.  Jim opened the back door to think about how he was going to get me out, looked up at the front door with the 6 big steps and the steps in the garage by that door that were smaller, and only 4.  He decided to go with the garage steps. He went to get the walker out of the trunk, when he remembered that he didn't put the walker in there afterall.  He had left it leaning up against the front wall of the entrance to the building.  At this point, I was so warn out, nauseous, and even more weakened than at the start of the trip. Now we had to drive another 45 minutes there, and then back again. I didn't want to sound upset; afterall, Jim was my only family living in KY.  Who else would do this for me?  So, he apologized and looked at me as though he wanted to cry because he felt so bad.  We went all the way back.  And yes, it was still there.  No one stole my fancy alluminum walker.  It was top of the bottom line too!  LOL!  It took me about 25 minutes to get out of the car and up the 4 steps into the house.  When I finally got to the bed, I got all covered up and puked very quietly in a basin on the side of the bed so as not to disturb Jim too much. I just still felt so bad about what had happened.  And ya know, we will never forget that day.

So, whatever happens now, I'm prepared!  I have Jim, who will make mistakes just like before.  But ya know what, it makes for great blog stories.  Also, if you can't laugh about it, then what can you do?


When I was told that for my shoulder replacement surgery, I was gonna be under general anesthesia and a nerve block, which is kind of like an epideral but just for the arm that is having the surgery.  I've had it before for my other shoulder surgeries, and I've had the epideral for my hip replacement.  The nerve blocks are crazy things.  You cannot feel that specific limb at all until the anesthetics start wearing off, and when that happens, it is like a heavy feeling.  When I had my hip replacement, and they came into the room to check on me after my surgery, well a number of odd events happened.  First of all, the male nurse asked if he could look at my incision. I lifted up the side of my gown to show him my left hip, but there wasn't a bandage there. I freaked out. Immediately my thought went to that they replaced the wrong hip, so I looked at the other side, but there wasn't a dressing on that side either.  He lifted my gown up on the left side to reveal my buttocks, and sure enough there was a dressing there.  I was so astonished to see a dressing there. I said to the nurse, they replaced my hip through my butt? He laughed and said that I had a very thoughtful surgeon who wanted to make sure I could still wear a swim suit.  So, I'm feeling pretty good, but the epidural hasn't worn off yet, when it should have.  It hung around entirely too long.  They start to get a little nervous and think maybe they should get me up moving to get some circulation to the leg.  That is when I realize that the feeling is there, but my leg is just not the same as it used to be.  When I think, move leg, it doesn't move. I had to put this lassow around my toes and literally lift my left leg out of the bed because it plum forgot how to work. I had to totally retrain it how to move from side to side, climb chairs, and then rebuild the muscles.  It was incredible. I thought it would be a cinch.  And I'm a nurse, and I was this clueless! I can't even imagine being a person with no medical training at all!


So, before I got my hip replacement I was working as a diabetes nurse educator in a hospital in Lexington, KY. I was in a wheelchair because I could no longer walk on my left hip because it had already collapsed (just like my right shoulder now, except I don't do a lot of walking on my hands).  Would you believe that the HOSPITAL was NOT WHEELCHAIR ACCESSIBLE!?  Yes, you read that correctly, so you don't have to read it again.  I would park in the parking garage, and then I would call the nursing manager to meet me by my car.  She would come down and push my wheelchair from my car to the door.  Then she would open the doors and stand there holding it open while I rolled myself into the elevator lobby area in the parking garage.  We'd take the elevator up to the floor we needed. Then she'd wheel me over to our building and open the next couple of doors for me as I wheeled through them. Then we'd take the elevator to our floor. She'd wheel me to my office door, and open it for me, and again, I'd wheel my way on through the doorway.

Well, you can imagine this got old for me and for my boss.  I knew I wasn't going to work like this much longer.  I taught classes in that building at night, when I was the only one in our department.  How was I gonna get out of the building without a hospital guide?  I needed a service dog at the very least.  So I was approached by the nursing manager to take medical leave until I could figure things out.  So I did. I took it for an indefinite amount of time, thinking I would return to the job when I got better.  I never got better. I got my hip replaced, but the other hip still needed replaced at some point. I began having problems with my knees and shoulders and wrists and elbows and fingers and ankles and toes, etc., etc., etc.  They had even told me not to worry that my job would always be there for me whenever I wanted to come back. Instead, I ended up on disability--bummer!  Instead, I ended up with the World's Record of the amount of chronic illnesses one person could get in a lifetime.


This time, what is really important to me is that I will have my mother-in-law here for the actual surgery. That means so much to me.  People don't realize how hard that is to live far away from friends and relatives that you have known your whole life, and not have them there for such a serious surgery.  I get very nervous the day of the surgery.  Up until that point, I'm completely calm.  But there is something to be said about having a loved one there when you go under, with that fear that there is always the possibility that something could go wrong.  Things can go wrong anytime there is anesthesia involved, but I'm getting a nerve block, they are cutting through a huge muscle, and literally cutting through and removing my shoulder and putting in a new one.  CRAZY!!! Even though, I've had this done to my hip, I still cannot even fathom that they did that to me or that it is gonna happen again, or that it will happen several more times in my lifetime, and then revisions will more than likely also occur.  I guess I might as well sit back and enjoy the ride...

Lastly, I'd like to mention about my pain management. So I go today to see my pain management doc.  I was supposed to ask him, per my surgeon, if he was gonna be following me post-op or if the surgeon should do that.  He said that he was gonna follow me normally and not change anything and to tell my surgeon that all the pain management therapy that I'm currently on will continue now, during and after the surgery plus whatever they give me for pain because the therapy that he has me on is my normal regimen for pain control on a daily basis.  My pain for post-op will be separate from that. So I called and left a message with my surgeon's nurse with that info. He calls me back and says that the surgeon is definitely gonna have to call my pain doc because the amount of pain meds that I'm on is more than they have ever seen.  If they add to that, that is an extreme amount of narcotics, and he believes that I'm already on very powerful narcotics.  First of all, let me clarify. I am on the lowest dose of a long-acting narcotic twice daily, and have been on that same maintenance dose since 2002. I am also on a short-acting narcotic that is the lowest dose that technically can be prescribed up to every 4 hours as needed for pain. I have it prescribed twice a day and only take it at bedtime because it makes me sick.  So, how is that extreme!!! When I had my hip replaced I was taking the same short-acting every 4 hours before my surgery, and I just continued it after the surgery, and then weaned myself off it as the post-op pain got better.  When I spoke with my pain doc about what the surgeon's nurse said, he told me he would talk to the surgeon because he was not going to have me go into surgery without adequate pain control, and he was not going to have me come out of surgery in post-op for that matter without adequate pain control!

This is very important info people...communicate with all your docs if you are gonna have surgery...you may be on lots of meds or have lots of different conditions...make sure you know everything you need to know before you go to the hospital that day for surgery!!!

Attitude Is Worth A Million Bucks!

(This post was presented in ChronicBabe Blog Carnival #3: Learning to Live with Pain on May 4, 2010.  "Many of us ChronicBabes live with everyday pain. Here are a ton of different perspectives on what it's like to live with pain - and how to do it with style, humor, and panache.")

Yesterday was EXHAUSTING to say the least.  I had my pre-registration at the hospital for my shoulder replacement surgery. I got to my orthopedic surgeon's office at 2:15pm, well 2:30 because I missed the turn and had to find a place to turn around and then make my way back to the office.  I got there a bit past my appointment time then. So already my energy was a bit anxious and stressed out.  I hate driving on Peachtree Rd. in Atlanta anyway. It is a big, windy and busy street with lots and lots of crazy drivers.  People are always crossing the double yellow line.  Just last month someone crossed over the double yellow line and hit someone head on right in front of me.  Not a pleasant sight. Very frightning in fact.  And yesterday afternoon someone decided to make a left-hand turn from the far right land, cutting in front of cars in 2 other lanes! Incredible. So, I was a bit late, but I made it, my blood pressure was high, I'm sure; but I made it!

After meeting with the physician's assistant, my husband and I headed across the street to admissions at the hospital.  We filled out the paperwork--I FILLED OUT THE PAPERWORK!...I met with the clerical person and went over the insurance information and other important billing information.  Jim sat in the chair and crunched on his pretzels loudly and sipped his soda like he had a microphone held up to his mouth.  I thought it would be best for him to leave and head into work.  He kept saying that he wanted to stay. I knew that he really wanted to be there for me, but I also knew that he really did not want to be THERE.  When I was finally called back to the admissions nurse, she told him that he had to stay in the waiting area.  I told him since he couldn't come back with me anyway, he should just go ahead and leave.  So he left...

This huge feeling of relief came upon me.  I know that seems rude, but he didn't want to be there anyway. The energy wasn't good. He was anxious, making me nervous. I really don't mind waiting.  I feel like I spend most of my life waiting--in the doctor's office, in traffic, in line, for Jim to come home from work, for dinner to cook, for Jim to find time away from work, at the post office, at the bank, for the pain to go away, for a birthmother to pick us so we can finally adopt a baby, for my surgery date to finally come, for the other joints to collapse so that they can also be replaced, for a diagnosis, to see if my meds will work, to see how long they will work, to see if the change in my meds will help, for my remicade I.V. bag to be mixed in the pharmacy, to have my I.V. infused over 3 hours, for a taxi, for my surgery date to finally get here (hmmm, I said that one twice), at the vet, for the groomer's to call that Max and Cookie are ready, at the airport--and I really haven't lost my patience.  I have no problem waiting. I know that patience is a virtue. I know that getting all fidgety and nervous will not make you get what you are waiting for any quicker, than waiting patiently.  So I wait quietly and still.  I have actually reached a point where I am content with just waiting.  I don't have to be doing something while I'm waiting, like reading a magazine.  I will read a book, or work on my laptop if there is something that I need to be working on at the time that I am waiting.  But I love that I can actually just be still.  But in this stillness, I pick up on the energy of all those around me that have not adapted to the waiting game, and I lose it! I can no longer just be.  I absorb that nervous energy and become just as anxious!  This anxiety comes out in how I try to control how everything and everyone (even God) affects me and how the outcome will turn out, and this is really difficult for me. For instance, I don't mind waiting for my surgery, but until I have searched and searched for the right surgeon to set the date of the surgery do I feel comfortable. I need to be in control of the search for the physician, or my destiny in other situations.  Now I am working on that.  It is the biggest thing in my life that I'm working on right now.  I want to be able to step back and let go and let God. There are times I believe that we are not supposed to just sit and wait, but help things along, like look for the best surgeon in town, etc.  But then I have to know when I have done enough to help in the control over my own outcomes, and just let God do his job. I have not reached that point yet. As I said, I am really working on it. But, once I know that there truly is nothing that I can do but wait, there are no people to call, no extra footwork for me to do to make sure that everything is on the right path.  And, again, I really think this is because of all the absorbed energy from those around me who are so anxious.  I get that way, when people are driving crazy on the road, even though, I have no where to be and am very relaxed and still. Obviously, this is not my energy, it is someone else's.  So this is what was happening to me yesterday as I sat in the waiting area with my anxious, stir-crazy husband! So that is why I did better when Jim decided to go to work.

As for my time with the admissions nurse, well, it went very well.  The surgery date is still set for March 29th as scheduled.  I have to be there at 9am for a 1pm surgery.  Now, talk about no better time for patience.  That's a long time to wait for your surgery. That is a great time to be still!

She began by going over my history with the medications that I am taking.  As I was going over all of my auto-immune diseases--sjogren's, psoriatic arthritis,--bone/joint diseases in addition--fibromyalgia, avascular necrosis of hips, knees, and shoulders,--and allergies--latex, and some antibiotics...along with many other medical conditions...then the nurse told me she would be taking blood and performing an EKG.  She put a red I.D. bracelet on my right wrist and told me not to remove it for 2 weeks so to have it on when I came in for my surgery.  Wow, that's a long time to wear a hospital I.D. bracelet!  But I will follow instructions.  I just can't submerge it in water.  Can do! No dishwashing, no baths. I will take showers though, I promise.  So, the nurse tells me that in all of her days as an intake nurse, she has never had a patient with as extensive of a history and as many meds as me.  She wanted to know how I did it.  How I did it? I just do.  If I didn't do it, what then?  I have to do it!  I have no choice.  She proceeded to tell me at least 5 times how proud of me she was.  How nice of her!  But she doesn't have to be proud of me, I'm just surviving, persevering in a sense.  Otherwise, life would not be worth living.  I believe we make our life worth living, and if we don't, I think it comes back to us in the end.  I believe that we mapped out our blueprints before we were born, so we decided what we wanted, and what we could handle, so tough tuckas.  If you didn't think you'd be able to handle what was gonna be dealt to you, then you should have thought about it before you wrote it in your plan.

She said to me that she has never met ANYONE with an attitude for life like me. She thought that I should teach a class on how to have a good attitude toward life, no matter what.  She had never met anyone with such a wonderful attitude who was NOT EVEN SICK!  She couldn't even imagine how someone like me could be so happy and optomistic.  I said, "what do I have to be depressed about?"  Then I laughed.  She laughed with me, and said, "that is exactly what I'm talking about.  You should be a life coach, and I'm totally serious!"

Well, perhaps I'll think about this life coach thing.  I do have a lot to offer--tough life, positive thinking, patience, etc.--but would anyone listen to someone like me?....Still, I will continue to keep my postive and happy attitude.  It may not heal my chronic illnesses, but if anything at all, I feel better when I am happy and positive, when I help others, when I'm selfless, when I love others before myself!  I really am a glass half-full, life is full of rainbows, and let the sunshine kind of gal!  I wouldn't change a thing!

The Pep Talk Worked!!!

So I didn't get up quite as early as I wanted to, but I did get up and go straight to the gym after feeding the fur kids, giving Max his water and his A.M. insulin, and eating some breakfast and taking my A.M. meds as well.

I almost rolled over and stayed in bed, but I knew that I would feel terrible about not going after talking myself up about being able to go. I was thinking so positive before I went to bed, that I just HAD to go!

I began in the hot tub because my right elbow was double its size this morning, hot, and in a lot of pain. I knew that if I just jumped right into swimming, I would just hurt it more. I sat near one of the jets and let the hot water hit my sore elbow. Wow! It hurt like hell! I thought that I might as well kick my legs and get some exercise while I was in the hot tub. I did this for about 25 minutes.

Then I went swimming!!! I swam 10 laps, which is about 1/2 of what I usually do, but my elbow started to throb, and I knew it was time to quit.

Ya know when I swim laps, I basically make up my own strokes because my range of motion is so limited. I take my glasses off and set them on the side of the pool, and basically go back and forth doing a frog-like swim and then keeping the same arm motion as the frog swim, I continue going back with a kicking motion. This changes things up a bit. I can feel it in my muscles, so I know the movements work as exercise. I choose not to go underwater, though. It is just a self-choice. I have goggles, but I can't see anything without my glasses anyway, so why make things even more difficult by putting my head under the water.

I love the peacefulness of being in the water. I know it's exercise, but I almost feel like I become a part of the water. It is such a wonderful feeling. Floating, almost gliding across the top of the water. I am a very delicate swimmer because I used to be a ballerina. It is very obvious in my swimming. I make no noise when I swim, and the water barely moves around me. I never splash any water up out of the pool or up into the air. I swim without a sound--silence...There is something so graceful about my swimming. It's almost like swim-dancing. I am overcome with serenity, peace, and a feeling of being held. It feels as though the water is holding me up. The water will not drop me. My range of motion is so much better in the water. I have so much more energy in the water. I feel like an athlete almost. It is like being taken to another space in time, like another dimension, where I can do all of this with no pain, without needing help, and feeling like I have a special talent or ability. I feel invincible!!

Today, it was very crowded at the pool. I didn't even notice, because I take my glasses off. I can't see anything without my glasses. I am not bothered by all the people in the water or stressed out by all the people waiting for a lane to open up for them to swim in. I just continue to swim in my alternate universe...

Then, I stretch my legs and my feet before I exit the pool. But slowly as I climb out of the water onto land, my true self emerges. I begin to lose my well-balanced body. The muscles and joints begin to stiffen and get sore. I start to transform from a healthy-feeling 35 year old into an aged, 80 year old woman. My limping body makes it's way toward my towel with its past surgery scars on its legs, hip, and shoulders. "Who is this person?" I ask myself...

Just as I'm drying myself off, a dark and handsome young man approaches me. He tells me that I am the most beautiful being that he has ever seen. Of course, inside I am laughing. Me, the most beautiful being? Obviously, HE needs glasses more than I do...I say thank you to be polite. He then proceeds to ask it I'm married. OMG! He is seriously hitting on me!!!

This is when I realized that the way I feel is not what other people necessarily see. Although I do have surgery scars--old scars which are not that visible anymore, although I see them still. I am still beautiful. Imagine that!!

What I learned about today is that if I continue to take care of myself, people will see that I love myself. They will begin to believe in that alternate universe that I believe in when I'm swimming. If I begin to believe enough that I am that person, even out of the water, people will see that beauty. They will feel that love for life, that peace and serenity that I feel when I'm swimming.

I will continue to swim and take care of myself. You can't imagine how good it makes me feel. Also, it's always nice to have a dark, handsome man try to pick you up at the gym when you are at your most vulnerable moment and in a swim suit besides!!!!

Time to Just Be Still...Talk to Myself...Give Myself A Pep Talk!

There are just some days where it is just nice to never get out of your PJ's, and this was one of them. I was not in a lot of pain today. I was more fatigued than anything else--and just so tired...

Sometimes on days like this it feels like my body is rejuvenating itself. It's like a home spa day. I never left the house, but I did go outside to take my fur kids out to go potty.

It has been raining outside today all day, and I'm talking a thunderstorm and flooding, no light drizzle. There were even areas with hail. I for one enjoy listening to the rain, but usually, the body would rather take a pass. Today was not so bad, except I could have slept all day long!

Yesterday was my I.V. infusion day at the infusion center at the hospital. I felt so tired when I left there, and I even took less of the benadryl than usual. I don't know, perhaps my life is just catching up with me. Perhaps all the travel that I've been doing, and preparing for the adoption of our baby, and getting ready for the shoulder replacement surgery, and now with my dog Max's new diagnosis of diabetes--life is just tiring. It seems reasonable. I for one am not a "normal" person either. The everyday stresses of life can be quite a lot for me to handle with all my chronic illnesses. I usually take on too much, with full knowledge. And why, you may ask? Well, I'm a control freak, type A personality, OCD, who tends to overdo everything. I know full well when I'm on the verge of getting overworked, and yet I push it further and further to see if I can get through just a little bit more.

I'm really trying to take better control over myself though. I don't want to wear myself out like this. I am going to do better. I'm in bed typing this post, and then I'm going to sleep. I will not think of anything else to do before going to sleep, except taking my pills of course. Then I will get up bright and early and go to the gym and go swimming. That is what I will do! That a girl! Take care of yourself, Dana! Exercise is good for me, and swimming is great for my joints. I really need to keep up with this until my surgery because when the surgery date approaches, it will be a while before I can do my normal exercise routine again. So yes, I will do that!

Great pep talk!

Now if I could do this for myself every single day, sometimes several times a day, imagine how much better I would take care of myself. Yes, I will do that too! I will begin talking to myself on a daily schedule, several times a day! Add that to my agenda. Now I sound crazy. But no, I haven't lost my mind, I am finally gaining perspective. I have to keep in touch with myself, or I will never get through this waiting...

Then, I will totally lose it when the day of the surgery arrives...

Again, great talk, Dana! Let's do this again tomorrow! Good night, and sweet dreams!

Looking Toward The Positive!

Everyone has always told me my entire life how I am such a positive and happy person. I truly believe that I am a positive person, but being positive doesn't mean that I always have to "put on a happy face." Having a chronic illness makes it especially difficult from the moment I wake up until the moment I try to go to sleep at night. I am happy; I do love the life that I have with my husband and my two adorable fur kids; I actually wouldn't change a thing. But there are days that smiling is so hard when I'm concentrating on just walking or using my hands or when my joints are so swollen that I can only stay on the couch in my Jammies all day curled up with my fur kids and my blanket, watching the Lifetime Movie Network.

Still, I enjoy passing it on. Ya know that feeling when you smile at someone, and they smile back? When you nod at a passer-by, and he/she nods back accepting you as a caring, happy person? I even rolled my window down today as I entered my apartment complex to address some of the kids who had gotten off the bus. I had seen them before, but they don't know me personally. I'm just the kind of person that always thinks that people should know me. I believe the world could someday be that place again where we can leave our front doors and windows open and not only feel safe but be safe. Well, anyway, it was raining heavily, and I asked if they wanted me to drive them to their apartments. They looked at me like I was that crazy lady that everyone knew down the street that they avoided at all times. The kids said "no that's OK." I replied, "oh, mom told you not to go with strangers, and I'm a stranger. I get it. Bye then." It actually hurt my feelings, ya know. I honestly am one of those people who would never hurt a child. I only have good intentions at all times. And that's the truth. It's rare, but honestly, it's the truth. If you knew me, you'd understand. When we lived in Kentucky, we were the safe house. Kids could come to our house if they got locked out or missed the bus, etc. I forget that people don't know us that way here. I tried to offer help to the young boy that moved in next door with his mom. He had gotten locked out when he came home from school and his mom wasn't home from work yet. I took my dogs out to go potty. When I saw him sitting outside his door with his backpack, I felt badly for him. I asked him if he was locked out. I asked if he wanted anything like a drink or a snack until his mom got home. He said "no." I said he could even come inside if it was taking a long time. I told him it was only me and my two fur kids, and that my husband wouldn't be home for a while. I said that if he needed anything at all to just knock. But again, he didn't know me.

We are in the process of adopting a baby, and I just can't wait to bring him or her into my home. But I love all of God's children. I'm here to help if I can in anyway. I am always available to offer a helping hand, but it is so hard to help a child with the way the world is today. Parents HAVE TO teach their children not to trust other adults that are strangers. I get that. I will be the same way as a parent. I just wish that all people could see through people to know if another human being has good intentions or intentions to do harm. It would make life so much easier.

If people could see through people, they could also see that on those days that I'm not smiling, that I'm actually very content with the path that my life has followed. I just happen to be in pain today. And I don't mean that I have a little headache. I mean that every joint in my body HURTS. EVERY PART OF MY BODY I CAN FEEL! Yes, I am having trouble concentrating on what you are saying to me because I'm having trouble hearing you over my knees right now. They are SCREAMING OUT at me right now. How many people can say that parts of their body are actually screaming at them? No one else can hear my body calling out to me for help. I am doing everything possible to quiet my pain. Medication, warm baths, heating pads, exercise, massage, alternative therapies like healing energy, meditation, EVERYTHING... Still, the constant yelling and screaming doesn't end!!!

Today, I had an appointment with my counselor, whom I see every Wednesday at noon. I suggest that anyone with a chronic illness do the same. It helps to talk it out. If your body isn't listening, a counselor will at least hear you vent. They won't complain about it either! Today, I just felt the need to cry. Yes cry! I'm not sad. I'm not depressed. I'm actually happy. Yes Happy! So why am I crying, because I'm in pain, and it helps to cry sometimes. It's a release. It's harder to smile when the pain is so bad that you need to cry. Once I cry, I can then smile to the world.

I know what you're thinking, "isn't smiling a facade?" No it's not. I'm smiling because I want to smile. I want people to know that I am actually happy. As an emotional, mental, feeling person, I am happy and want to smile. If I were only a physical entity, then no, I would definitely not smile. I would only be a deteriorating, crumbling, "35 year old stuck in an old person's body", with a structure that is slowly falling apart. Wow--that is horrible! But that is not who I am. I am so much more than a physical being. God made me a feeling, thinking, and healing person too! Those parts of me weigh so much more. I am happy to be that "me." I am a wonderful person, and I should be proud of who God made me to be. People enjoy being with me. I enjoy being me!

So why not smile! Why not look at the positive even if it is something very, very small? It may be that I got out of bed today. It may be that my pain level was a 5 instead of a 10. It may be that I could go to the gym and swim without any extra pain. It may be that I was able to go to Target and shop without getting too fatigued. It may be that I got to visit my dear friend in KC and be with her and her family for a week and just be. It might be that I was able to make dinner. It might be that I was able to take a walk. It might be that I was able to shave my legs. It might be that I was able to attend a meeting at the Arthritis Foundation. It might be that I was able to go in to help a pregnant woman today at the pregnancy center that I volunteer at once a week...ya know it just might be that I just want to smile!!!

Ya know many times being positive not only brings out the positive in others, but helps me to feel better too. I focus on other people and other things, happy and good things, and not on my pain and fatigue. That can't be at all bad, ya know. I think it's fantastic, and I definitely won't stop smiling!!!!

Beginning to Turn Around...Thanks to The Signs!

So the last time I spoke I was upset. I literally had reached my breaking point.

Since I last spoke with you, I have done a complete 180 degree spin! When you go through any crisis, like that of a chronic illness that goes out of control,you reach a point where the floor collapses from under you and the ceiling falls in on top of you. Sometimes it is symbolic and other times it can be something realistic and tangible.

I went for an energy healing, and she said to me "I see the foundation of the structure collapsing. Do you know what that means when I tell you this?" At the time, I thought it meant my body's structure wearing down and literally collapsing. I have a joint disease that literally causes the blood flow not to reach the joints, the joints die, they collapse (at different times), and then the only thing left to do is replace the crumbled joints. I have already had my left hip replaced, and on my right shoulder has collapsed and surgery is March 29th to replace it. Well that seems like the tangible, superficial structure that is collapsing. But my world around me was collapsing to. I was losing control. We are in the process of adopting, I am on a path of self-discovery, finding myself spiritually, we are living in a city that is not built for someone like me, and I have a husband who is trying to get tenure as a professor. So, symbolically, my ceiling was falling in on me, and my floor was not feeling very sturdy on my feet.

I was not feeling very confident in my decisions. I began second-guessing things that I would do, and decisions that I would make. I never would do that because I believed that God would steer me in the right direction to take the right path. And even if I took the path less traveled, well, it would be OK because God would get me there.

As I became less and less confident in myself, my arthritis and other health symptoms got worse and worse and all at the same time. My whole body at once was telling me to stop and listen...stop...pay attention to the signs...I always paid attention to the signs before...what the hell made me forget to do this now...I tell everyone else to look and listen to the signs...what made me so special that I didn't have to do that anymore...Well, eventually, my doctor saw my crippled body and said to me that I needed to stop and listen to my body...it's trying to tell me to relax and calm down...I'm obviously on overload!!!

I took a class on Saturday morning about I-Ching. I had no idea what it was. I just signed up for it because a friend of mine was going and sent me the invite. I went to it, completely unknowing as to what was in store for me, but I was intrigued nonetheless. I won't go into details as to what I-Ching is, but will suggest to everyone out there to at least take an intro class about it. It is fascinating to say the least. When I asked my question to the almighty and the energy force of the world and threw the coins, my answer came back to me no quicker than I needed it to to save my life...I received the answer to what was blocking me from getting what I needed and wanted out of life: Hexagram #28--"the breaking point". The almighty and great energy force of the world mirrored back the image that I already new. I had reached a breaking point and "the foundation's structure was collapsing from the bottom as well as the roof from the top caving in from being too weak." Imagine that. It gave me the answer from my blog....!!!!! I realized that I need to stop overloading myself with petty things, worrying about things that I cannot do anything about, and start understanding that God is in control of everything. When I realized this, a huge weight was lifted from me.

I also was given a shot in the butt by my doctor the day before to help with some of the pain and inflammation, but you see sometimes we have to look for the signs and make small changes to relieve excess weight off our shoulders so we can handle life...

Today, my answer to the same question was: hexagram #17 "the following". Following brings supreme success. You may not be able to change the direction of the wind, but by frequently adjusting your sails, you can arrive at your destination.

Those who would acquire a following must speak the language of their followers. Those who would be loved must become the envisioned lover of their beloved. Those who would prosper must bend with natural forces and the pressures of society. In matters of principle, stand firm; in matters of style and taste, swim with the current.

In all human affairs, change is constant. In order to stay fresh, old ideas and patterns must continually be discarded in favor of new ones. Only by being adaptable to the demands of the time can the highest good emerge. Only by adjusting to changing circumstances can you prosper. Remain flexible, and you will gain the confidence of those around you. Bend and you shall not break!!!!!!

When Life Gives You Lemons...

 
Welcome to the July Pain-Blog Carnival for How To Cope With Pain, some of this month’s great writing related to pain from other blogs and websites.  I hope you enjoy the selections! Mine was one of them!

I'm sure you've heard that before: When life gives you lemons, make lemonade...Well after a while, can there just be too damn many lemons?!? I mean, eventually, there is just no room for lemonade, or what if you don't even like lemonade? I actually don't really like lemonade. I like lemons themselves in tea or water or to clean with, but still, when they are basically flying at you and falling from the sky, and you don't know what to do with the damn lemons anymore, you have just had enough already, right?

OK, maybe lemons are just not a good analogy...

What I'm trying to get at, or basically just trying to say is that I have reached my breaking point. I can no longer make lemonade out of what has been given to me. Now, I'm a positive person, so this is hard to do to me. How did I get to this point?...Well, it seemed like each year I was diagnosed with 1 or 2 or 3 new diseases. I could handle that. Then we had to get the diseases treated. I could handle that. Then we had to get the diseases under control. I could handle that. Then the diseases would get out of control at different times. I could handle that. What I'm finding hard to handle is when they all start to get out of control at one time! That is what I'm finding hard, no wait, IMPOSSIBLE to deal with!!!!

The fibromyalgia gets under control for a while, but it flares just as my right shoulder collapses from the avascular necrosis. I have to stop using my cane for my right hip because my fingers decide to get all f***ed up at the same time!!! Meanwhile, my ankles become cankles! How the hell did that happen!!! They have swollen up so badly that I have no ankles anymore--crazy shit right? Oh and what about my elbows. They just don't work anymore. And my neck, that is of no use to me anymore. My lower back--the list goes on and on.......

So, today I go to see the rheumatologist. He looks at my fingers and tells me that I'm overdoing things, that I just can't do as much as I used to do when I was healthy, when I was NORMAL is what his brain was telling me. I'm not a normal person anymore. I KNOW that! I just don't always admit it to myself or to others, and I don't always accept it either. I think they call it DENIAL!! I'm not always in denial though. I go in and out of it. It is a state of mind for me. Most of the time, I completely understand and work within my limitations. Those other less often times, I set my goals and expectations extremely high. What happens is that I reach them just once and I'm done for. Once I reach them, I think I can do it again and quite possibly again. That is when I get into trouble with myself. That is when I cause problems with my body fighting back, and it's World War III inside and outside of my body, yes, yours truly!

Why do I do this to myself? I was just telling my friend yesterday that people with chronic illnesses, especially those that involve pain and arthritis, are the most stubborn people I know. I'm allowed to say this because I'm at the top of that list. I am so stubborn, type A personality, an overachiever, and a control freak! So isn't it strange that we would be the ones that would end up with a disease that forces us to give things up, makes us stay in bed, and stops us dead in our tracks? Or maybe it isn't that strange after all...Nothing a shot in the ass can't fix!!! Well, it can't hurt anyway. LOL!

Everything You Have to Go through Just to Get through The Day!

So as I sit at the infusion center at the hospital, in the basement besides, next to chemo patients and others like me. I'm generally the youngest person in here even though being 35 doesn't always feel so you. But people always say, "you're so young to have arthritis." This can be followed by an endearing "honey" or "dear" or I've even heard "darling". Well, I live in the South first of all, and secondly, a lot of people are a lot older than me that say this, and those seem to be the words that come off their tongues. Also, I find that people assume that I'm younger than I am chronologically. And we all know that sometimes that's a compliment, and other times it can be upsetting. Many times it depends on our mood at the time that people are making these comments.

So back to the infusion center...Every four weeks I prepare the day before by taking my prednisone, a pretty hefty dose to boot--20 mg three times that day. I also take 2 Zyrtec the night before I go for my infusion. I make sure the car has a full tank of gas, so my husband can drive me and then drive back home and then take the car to work and have the car for the day that day. I also make sure to get to the ATM to get cab fare because I won't be driving myself home afterward. We leave our home around 7:15 or 7:20 a.m. and head for the hospital. I make sure that my arms are warm and that I'm well hydrated because I'm a hard stick. I have been known around there to have been stuck up to EIGHT TIMES! Don't let this deter you from going on biologics if you have some type of auto-immune or inflammatory condition that requires it. It is worth it even after that. I have been on this particular biologic for a little over two years now, and am feeling much better on it, but after about 6 months on it, I had a reaction in the infusion center that was made up of hives, tightness in the chest, coughing, and stomach pains. They make sure now, and basically it is in my hands to do the home pre-treatment, to pre-treat with every infusion. Not only do I take my meds at home for pre-treatment, but when I arrive, they order my I.V. meds from the pharmacy, and 15 minutes before starting, push intraveniously 25 milligrams of Benadryl and give me 500 milligrams of Tylenol orally as well. On the day of my reaction, they stopped the infusion for 20 minutes and gave me another 25 milligrams of Benadryl by I.V. push, waited for the symptoms to subside, and decreased the speed of the infusion of my biologic, which I haven't yet mentioned as Remicade. So now, I must only get my Remicade infused over 3 hours, even though the FDA has approved the infusion for over 1 hour. It is just too risky to increase the speed.

So when I am finished with the I.V., and the nurse removes the I.V. and tubing, I am free to go. I walk to the main hospital through 2 other buildings and call the cab. He (I'm not being sexist; I've just never had a woman pick me up yet)usually picks me up within 10 to 30 minutes as I get more and more tired and groggy from all the drugs. I climb slowly into the cab and set out to my home. I pay the driver, go in, take the dogs out, and collapse on the couch for several hours. When I wake up, I generally take more Benadryl because I feel a bit itchy. I do some things around the house, and pass out on the couch again.

It seems like so much to go through doesn't it?

So Far Away...

I keep telling myself, it will be here before I know it. But wow, March 29th is a long time away. Not only is the surgery a long time away, but I have no family living close except my husband. I am having some family come in town to help out, but I really hate asking for help. I feel like I was able to get through a total hip replacement before with no help by family, so I should be able to get through this. But then I feel like that wouldn't be very fair to my husband now would it?

He is a wonderful caregiver/caretaker. Boy can I tell you some stories about my hip replacement. He had to do things for me that are never mentioned in your vows. Well, maybe loosely when you say "in sickness and in health" and stuff like that. Who would have thought that sickness would have included a brand-spankin' new state-of-the-art hip, titanium and ceramic, top of the line--set the insurance company back about $26,000. Now, off the subject a bit, does that mean that my net worth goes up? Just a question. So with this lovely new hip comes a not so top of the line walker. I did not get the best of its kind. I got the least expensive, fold-down type to be able to put in the back seat or trunk for easy travel. So back to what Jim never knew he was getting himself into...

Here I am just 48 hours post-op, and the surgeon discharges me to home. I was ecstatic. About what? Well, home I guess. But I wasn't gonna sleep in my own bed because I couldn't make it up the steps to the second floor to get to our bedroom. Instead, I got to sleep in our wonderfully uncomfortable sofabed. Also, something to look forward to was the fact that we did not have a full bath on the first floor, so no shower for me for a while, quite a while. Turns out, it took me a long time to rehab my way up those steps to the second floor. I had a lot of sponge baths. They are just not that sexy when given at home by your husband after 3 and a half years of marriage when you just had a total hip replacement at age 29 years. There is just nothing sexy about that. Jim did help me wash my hair in a water basin. He somehow thought that he could just shampoo my hair, and towel dry it, and then just comb or brush through it without any problems. Well, he learned really quickly that a woman needs conditioner, lots of conditioner! Wow, he thought, I can brush through that stuff you call hair finally!

Then after I mastered going up the steps, one step at a time, not alternating feet. Right foot, then left foot to the same step!!!!!! Yeah, I was getting nowhere fast! I finally made it to the second floor. Now I was going to get a long deserved shower. I had to have a chair placed in the shower because I couldn't stand for that long. So the question came out of my mouth. Do you think you could shave my legs? He thought about it. Why would I need to have my legs shaved? Was it for him; he didn't care if I looked like an orangatang. I think it was more for me. I just wanted to feel feminine again. So he reluctantly said yes. He took off his clothes and squeezed into our tiny stand up shower stall. Then, he slid down the shower wall until he was sitting on the ground. Then, he was literally squatting on the shower floor with my Intuition razor. He shaved my legs while the shower sprayed him in the face. He was clearly uncomfortable, but he continued to shave my legs everytime I asked him for about 4 months.

After that I came up with an incredibly amazing invention, which Intuition should totally patent. I bought a sponge with a handle and cut off the sponge. Then I took the Intuition razor and used about 5 hair rubberbands and wrapped them around the handle to apply the razor to the handle. Voila! An Intuition razor on a stick!!! Perfect for those hard to reach areas, like legs! For me, I couldn't reach anything yet.

I couldn't even sit comfortably at the kitchen table yet. I felt like when I sat at the table and leaned forward to eat something off my plate, that my hip wouldn't allow me to bend that way yet. So, it took me forever to feel comfortable, both physically and psychologically, to go out to eat at a restaurant. I felt like I needed to sit all the way up toward the table and have something propped against my back. That way, I would never have to actually lean forward. I was already forward and leaned over my plate. My hips didn't have to move at all.

So for me, to revisit a replacement surgery, makes me revisit every single part of that first surgery--smells, tastes, feelings. It is hard to be in pain. But it is also hard to kind of know what to expect, and fear that all over again.