I Digress

My Des

As I laid down tonight a feeling of defeat washed over me. I’m writing this as tears silently stream down my cheeks. I appear to have made an emotional digression. Without any scientific explanation, specialized education or medical back ground I am going to communicate the cognitive events that have led me to this episode.

Let’s see Perhaps a week ago I Volunteered for a few prolonged hours. I did this a couple days in a row. Don’t get me wrong the volunteering was great. Being of service is so rewarding and such a break from self. It’s the prolonged hours on a cement slab that were a bit of an awakening to me. I started to limp, and wine then promptly went home and iced various parts of my body, both nights. I spent a day demobilized and recovering. I have really been staying away from acting out on whiny behavior and limping because of the negative effects on my pain and psyche. I should have known I had pushed it too far. Perhaps it was ego or perhaps my overachiever that choose not to walk away before the job was done… Maybe even a little of both played a part. This prompted thoughts that I was not getting better I was just becoming less active and mobile thus decreasing pain…? First thought in my downward spiral

After exercising a couple times last week, I would come home feeling good and after I laid down to sleep became so riddled with pain. I was swollen all over my body and many joints including back, hips, knees and neck that I could not sleep. The good part is that this goes away after one night. I then am stronger and have a much stronger core. This is where my second thought compounded on the first, maybe this is something more serious. It’s the not knowing that always gets me slightly panicked. When I decided to research a little on my symptoms The computer alerted me to consult a doctor immediately due to the neck pain. Scary! I still can’t explain the knee pain…

Today my daughter and I walked a few blocks each way on a sidewalk. It was sunny and the air smelt crisp, clean and delightful. I started to get irritable on the walk back and realized I was in pain. After we made it home the rest of the day my knees have been burning and have swelled up. There is a sharp pain in my left foot when I step on it. Yes I definitely understand how pain can drive a person completely bonkers. Chronic pain being constant is maddening. Are these symptoms all related or are they not? What is causing these new pains? I have had people insinuate that it could just be normal pain… it sure feels new and not normal to me. Trying to figure out how I feel compared to what others think I feel is just a ridiculous process and it is super frustrating. This is when I started thinking that I have no idea what is going on in my body… I began feeling so helpless and the hopeless. I guess the tears make sense in that regard. Mentionings of being a hypochondriac drift through my thoughts. Commercials for doctors run through my mind preaching early detection is key. Horrific stories are found all over the web, books and news of people who did not reap the benefits of early detection. Do most women in their thirties suffer debilitating pain that radiates from low back and spreads through hips? Do you have pain that flairs up in your joints and rashes on your skin? Yes I suppose it could just be “normal”. I hope it is just normal body behavior but if it is then, my darlings, I may be thebiggest   wuss on the planet…people are going to have to work very hard to convince me of this because, I have overcome so much trauma, pain and difficulty in my life. that does not seem like a plausible explanation. I am open to any advice, any experiences that are like mine. I am willing to consider anything. Hec Ill even stop chewing gum at this point if it will help.

My family and I are living on one income for now so every dollar really counts and I find myself trying to guess the cost of a doctor visit and an x-ray for neck. sweat builds up as I consider all the possible ways it could go. Pay three hundred for doctor visit who sends me to x-ray for seven hundred, who then calls me and says I am fine (best case scenario) or refers me to a specialist who charges five hundred for the office visit to tell me I need surgery (less good case) especially since I am terrified of surgery now. Or I ignore it for free and it completely goes away (best case scenario) or I could ignore it completely and I have an aneurism and die (worst case) of course the worst case scenario could go any numbers of equally bad ways.  That is just analyzing what to do with the neck part. now let’s talk about why my knees and wrist are swelling and burning and my skin keeps breaking out in a rashes, Good Gad. Just The process of literally deciding what to do next could drive a person nuts. Yes I see why tiredness and fatigue, loss of ability, depression and frustration with people not understanding are the highest rated problems of any of us who live like this. It is a complex and overwhelming issue. A person really needs a team to make any kind of head way in this type of endeavor. I have even caught flak for looking stuff up myself online, slightly ridiculed for it. This is preposterous I have to be involved because it is invisible and I can’t afford live at a doctor’s office,

I know tomorrow I will be calmed down. I will spend time on ice meditating which brings me peace and joy. I have gained a new outlook on living on my orthopedic journey…I can now see there will be ups and downs, like most every process of life. So many decisions so many choices and so so so many unknown variables.

The feelings I have learned that triggered this negative response out of me are; feelings of helplessness, hopelessness, overwhelmed with information, fatigue, fear and of course being a burden.

Lord I pray before you today with gratitude. While I have had a hard day I feel confident that it will all be for some greater good. I know I have not been abandoned and that my purpose is becoming clearer each day. I am open minded, honest and willing to persevere and serve others along the way. Even if that means learning and teaching how to live, blessed in our current conditions.


Mind over Matter

Mind over matter

I have really been reflecting on my blog experience and I want each of you to know, when I write my experience it is just a reflection of my thoughts, feeling and experiences. I have no judgment on what path others have chosen. I know how different our pain and situations can be.

What I have been working on lately is pointing out in my mind when I have no pain. This has started by recognizing small moments. These moments feel like they are becoming more frequent. For many years now I have studied the balance between mind, body and spirit. I am so fascinated with this concept. When my body began hurting it took an unconscious effort to pull my balance back together. As my mind became more aware of my physical pain I really shifted out of balance. This was compounded by diagnosis and medical procedures like surgery. My thoughts became so negative that I was left in a sort of despair. Spiritually I became consumed with fear which is known to be lack of faith. Everything that makes me whole shifted out of balance.

This year I surrendered to my body and stopped frightening with it, I have come to realize that besides exercise (or pt) and healthy eating the only other option I have is to listen to it. The new concept I have been implementing works this way. Since I am powerless over my diagnosis, for example no amount of exercise will take away my hip dysplasia, I have begun to focus on the other two items of self I do have some control over. I am focusing on meditation and prayer which grounds me spiritually and is known to reduce pain and inflammation in a body. I have been mentally pointing out when I am not in pain or when I feel good physically. When I do these two things it starts to pull my mind body and spirit back in to balance. I know this may sound a little far-fetched to some people but I swear, it is working! My body is getting stronger and I am having less pain. Another thing I am playing with works with the same concept. After visiting with a doctor and mapping out problems, as we are supposed to do with them, I am writing down three things my body is doing well. Obviously we don’t go to doctors to fix what is right with us so I did find myself constantly reviewing what was wrong with me. Just another way to pick me up and balance out my mind and emotions so as not to become bogged down in my orthopedic diagnosis.

One struggle I have been experiencing is irregular and prolonged neck pain along with an uncomfortable knee pain. I have been going lightly on these area so as not to hurt them while I am strengthening my body and my core. I can’t help but think that this is the domino effect due to my original injuries. Since my body is interconnected when one area is injured it tends to affect the rest of the body. Am I falling apart one joint at a time? Only time will tell. In the meantime my spirits are high, I have hope and light in my life. I don’t feel like a burden on loved ones and I don’t feel lost. I have a purpose and I intend to fulfill it. I pray knowledge of your will for me god and the power to fulfill it.

How Do You Hide It So Well?

mandy3I have heard this question a few times. I am not sure why it does not sit well with me; however, each time I hear it I become lost in thought. Questions like, am I hiding it? How do I hide it, circulate around in my mind? I really feel like when my choices are limited all I get is my decision. Living with pain I have very few choices. It does not need to be hidden because it is not visible to the public. While I am the one who gets to feel my pain I know my family experience it with me. Most people would have no idea.

Option one, I can withdrawal from all activities. Withdrawing from activities has proven to not be healthy for my physical or emotional state. The body is meant to move. Being stagnant builds more physical issues on top of the original issue. Spine health reported that, disuse can negatively impact my musculoskeletal, cardiovascular, neurological and psychological and emotional processes. From my experience this has been very true. It has been very helpful to educate myself on disuse syndrome. Placing an exercise program in my life has helped me in every area of my life. But Only after the hardware had been taken out. Prior to my hardware removal, any movement was tearing my muscles up.

Option two is that I can live heavily medicated. Living medicated presents some other problems than the ones I have mentioned in my earlier blog entries. I have mentioned becoming addicted, living emotionally disconnected, crazy side effects and having muted emotions as some of the problems associated with living a pain medicated life. Another way this has been problematic is that when I would take medication I would overcompensate in daily activities because I felt no pain. I could not feel my bodies’ warnings. I would constantly over strain my body and not know until the medication wore of. I could not honor my body’s strengths or weakness while on narcotics. When the drugs wore off the pain would nearly drop me and it was indirect proportion the over activity I did while inhibited. It would be easy for me to consider this my “regular” back pain and push for more meds. This is yet another viscous cycle. Can you see or relate to what I am speaking of? I was literally hurting myself by not being in touch with my body and my pain.

My third option is to limp around whimpering each time I have pain. Now I am very familiar with this technique due to experience. My love language is “acts of service” so I love to serve and help others. It is literally how I show my love. I constantly felt the urge to explain to everyone when I was hurting. I wanted everyone to know why I could not help them, or for example come to their event. I needed them to know it was not because I did not love them or care. I felt bad that I could not do for others what I had always done. I could not meet my own standard of giving so each time I hurt I would whimper or explain it.

“I did not do this or that because of my pain.”

“I can’t come because I have to lay down due to my back.”

“I am resting because I can’t walk”

“The pain is so bad”

These are phrases that became part of my daily communication. This is part of how the pain and negativity snowballed in my life. I was constantly pointing out when I was in pain thus intensifying my pain. Now, I know and feel that I don’t have to prove it to anyone. (most days) People that love and care about me know because they have suffered with me. This is not made up in most people’s heads. No one would live like this if they did not have to. It is incredibly damaging to a person’s ego, esteem and confidence to constantly need help. Damaging to feel like a burden, to carry sitting pads around, not mop the floor or do daily activities and end up limping in front of others. Our pain is not fabricated and a majority of us do not have low pain tolerances. I would contend that it is the opposite with people who have chronic pain.

 My final option is that I can live my life in short spurts of activities and try to remain positive. This is the way I have chosen to live at the moment. I prioritize what is most important to me, time wise and then execute it in short amounts of time. I try to make sure I have time to rest my body in between activities. I make a choice to be happy. I try never to let my pain leak on my daughter and husband or stand in their way. I am more protective of my daughter than my husband since she did not choose to spend her life with me and he did;) I live with a level of at least a 4 on the pain scale every day. I consider a ten debilitating and unable to cry out in pain. Ten is pain that literally takes my breath away. Pain has become a part of my everyday life. My pain is often very insidious when it creeps from a four to a six. Often I will only feel irritated and tired before I realize my pain level has gone up and my body is done. I am getting better at associating “grumpiness” with my pain. I am not a naturally grumpy or irritable person; however, pain can take me there very fast. I chose this option because I just can’t stand to be sad another day. I will not be a victim of my circumstance today. Today I choose to be a warrior in my life.

I do believe when people have said that I hide it well that they mean it as a compliment.

So my answer is this…

I am not hiding my pain, I am just simply living with it.