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.

Could The Pain Get Any Worse...

This is one of 3 blogs for me. I have one for my path of self-discovery, one for use mainly to communicate with my young adult arthritis group, and now this one. This one is going to be different though. This is going to help me get through the wait for my right shoulder replacement. It is scheduled for March 29th, and it cannot get here soon enough!

Today is a particularly painful day for me for some reason. I have short acting pain meds that I can take at bedtime to get me through the night, but today, I got home and took one as soon as I got in the door. Now, as I type this the words are getting blurry, and any other pain that I have is disappearing very quickly, but not my shoulder. The meds are not even touching the pain! Incredible! It amazes me that nothing can soothe this pain.

So why would someone at age 35 need to get their shoulder replaced you may ask? Well, it isn't because I just want a new model, but I really don't feel exceptionally attached to this one either. I have a rare joint disease called avascular necrosis where the blood flow does not reach the joint, the joint dies, and the joint collapses. The only thing that can be done is to replace the collapsed joint. I had my left hip replaced in 2003, and now I will have my right shoulder replaced. I also have the disease in my other hip and shoulder and both knees. On top of that I have a form of arthritis called psoriatic arthritis and a connective tissue disease called sjogren's. Both affect my skin, joints, salivary glands, tear production, and lungs. I also have hypermobility diseasein my fingers, knees and elbows. I have high blood pressure as well as asthma and allergies.

So this morning I woke up with the pain so intense in my shoulder that I thought I wouldn't be able to even face the day. But ya know I did face it. I took a shower, fed the dogs, took them outside, and went and volunteered at the pregnancy center that I go to once or twice a week. I stayed there for the whole 4 hours.

I made it. Then I got into the car to drive home. How the hell did I drive in this morning? I cannot even put my hand on the bottom of the steering wheel today. How am I going to get through this week?

Sometimes I ask myself this, and somehow I muster up some strength to get through, but I really don't know how I'm gonna do it this time. I am being totally serious. I have strength sometimes that I never thought I could ever have, but come on, sometimes you just have to give up and stay on the couch.

I think I'm giving up. Is it giving up though when there is just nothing you can do? Well, the nausea is starting to set in. I remember why I told the pain doc that I cannot take pain meds during the day. I can't function. I get too sick when I take the pain pills during the day. But when you reach a point where you can't move anyway, why not take the pills and just go to sleep? What else would I be doing anyway? I mean could this pain get any worse? Oh God, I hope not!...