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.