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!!!