I am repeating this post because, believe it or not, while I was at the doctor’s office today, the Arthritis Today magazine had an article about pets and arthritis. Ironic, but I figured it made for a re-posting of this older post. Enjoy!
I have a cat. Her name is Shelby. She was a foundling who adopted me. She is also so much more than just a feline friend.
Shelby has an intuitive nature that allows her to see when I am ill and respond to me. When I am in bed, like now, she is laying next to me. When I am asleep, she lays either next to me or above my head. Some days, she is not around and that is usually when I am feeling good. She goes about her business as she normally would do.
When my lupus is acting up, though, she is right by my side, purring and rubbing on me and trying to help me feel better. It is uncanny, (or should I say, uncatty) how she knows without me saying a word, that I feel awful. She is not overly in my face, but she is on the periphery should she be needed.
While my cat is unique, she is not the only one who is intuitive. I read a story a few years back about a nursing home that had “adopted” a stray cat. The cat was allowed to roam the halls and “visit” with the residents. This cat had an intuitve nature too. It was discovered that the cat would go to a particular resident who was imminently ready to pass away. When a resident was at this point, the cat could not be coerced to leave the room of the resident. It would stay until the person passed away. It became noticible to the staff and they would know by the cats behavior, whether there was an impending death or not. They felt that the cat didn’t want the person to be alone, so it would stay on the bed with the person until after they passed.
I also saw a story about cats and patients with AIDS. The story said that those patients who had cats, tended to live longer than those who did not have a pet cat. Cats were the pet of choice because they did not require as much work as dogs and chronically ill people may not be able to give a dog the exercise they need. Who knew?
So, my Shelby has this same empathy, but for me. She has been a true and loyal friend in my down times and always helps me with her presence. She is not a “talker” type of cat, but she is always here, by my side, when I need her most. She does not judge me, or make me feel I am worthless when I cannot do things. She is just here, faithfully, making me fell loved.
Funny that a cat can do that and so many humans can’t. We should take a lesson from the animals on this one!
Having a chronic disease almost predisposes you to develop some form of depression. Shoot, life can be depressing these days without the added component of a chronic disease. It is tough these days, in many ways. I am discussing the blues here. Not the sweet jazzy kind of music. I wish it were that easy.
The type of blues I am discussing is that deep dark place where depression takes that ugly turn into heaviness of your heart and mind and soul. Some of you out there will recognize this place as you have been there too. Others will not know what I am talking about. That is good if you cannot relate to what I am talking about. I pray you never experience it.
I am in that dark place right now. That all consuming darkness that roots out any hopes and dreams and effectively destroys them. The darkness also engulfs the heart and makes you feel worthless and useless. I know, sounds like a pity party. However when you are chronically ill, it can take on a life of its own. For example, when you are not able to clean your house, do the dishes or take care of your household, you feel useless. Your self worth takes a dive and you begin to wonder if you want to fight anymore.
You see, when you are dealing with a chronic disease you fight EVERY day, EVERY minute, just to do what most people take for granted. You are fighting an uphill battle and when you feel really bad it makes it even worse. It is no wonder that depression is there.
I am fighting this demon right now. It is winning too. I am really tired of fighting it and sometimes just wonder if I really want to continue fighting it. Giving up is an option, and there are days, like today, when I think how easy that would be. I am not suicidal. I do not want to harm myself. I just want to let go and quit fighting and let the natural processes take place.
I will fight though, because I do not want to die. I just feel like at times I am overwhelmed with daily life. I will get on with life and this will pass. Please do not judge me weak, because I have just been fighting for so long and I needed a break from the fight. Thanks!
I must confess that I have thoroughly enjoyed our Indian Summer this year. Now that it is December, the cold arctic air has arrived and snow along with it. The beautiful white fluffy flakes have been falling off and on for two days now. The roads have not been bad, considering it is the first snowfall of the season.
I ventured out yesterday to pick up a few groceries. Most normal people do not think twice about getting ready and heading out, even in bad weather. I got dressed and put my coat on and headed out. I got to the grocery and while I was shopping, I began to experience pain in my legs, specifically in my knees, ankles and feet. After checking out quickly, I headed back home.
I arrived home and immediately took my pain medication (the one that really does not much). I was a total grouch too. I seem to be a grouch when I am in pain. At least, that is what my family tells me. I recognize it as well. After what seemed like a long time, the pain began to subside somewhat.
I posting this because it shows how I can feel decent one moment and in a short time, feel intense pain in my joints. The pain was triggered in part by the cold air I had been in. I have found when it gets cold, my body rebels and causes pain to occur.
My story is not unique. Most of us lupies experience more pain and flares in the winter, and it seems that the colder weather does trigger the flares and pain. This is the time of the year I call my hibernation period. I call it that because I do not get out much, and actually go out of my way NOT to go out. It is the only way I can feel like I can control my pain.
On the plus side, this last week I had my yearly eye exam and it went well. I have a new rx for glasses so I have to get them soon. The cataracts are still growing, but they are not as invasive as they could have been. Whew! Unless they get worse, I do not have to go back for one year! I go once a year because of the medication I am on, called plaquenil. It is an anti malarial drug which can affect the eyes when used long term. I have been on this medication for ten years or more now. To prevent the possible side effects, I have to go once a year and do several tests just to make sure all is well.
Next appointment is with the pain clinic for my first visit and then I also have an appointment to see the orthopedic surgeon about my knees. Finally, I will see my surgeon that takes care of my stomach. This month is the month of doctors. The good news is that once it is over, I should be cleared again for a few months at least.
When you have a chronic disease like lupus, you develop a “team” of doctors who take care of various aspects of the manifestations of the disease. I personally see my family doctor, a neurologist, a rheumatologist, a surgeon, an orthopedic surgeon, and my opthalmalogist. On the periphery are my other doctors, which I see as needed. One is my cardiologist and another is the gastroenterologist.
Well, in the meantime, I will update as I go through all of these. I am hoping to have more survivor stories soon from some of my friends. It is my hope that even if it helps and encourages one person, it will be worth it!
My lupus has started into the neurological realm now and I see daily things changing that I cannot control. Things like, my memory for instance. Sure, I joke about this but it terrifies me to think I cannot remember things at time. The fog I am used to having is mild compared with this. It is frightening to think that, like alzheimers, I may sink into the world of no memories. It would scare anyone.
I am having more migraines, more pain, and feeling lost in the shuffle lately. Combine this with an eye doc telling me I am developing cataracts, and my straws are overloaded and my back is breaking. I know this is a little thing but it virtually sent me over the edge. I mean, come one, what else is going to happen? There I said it.
The unknown is scary. I can deal with many of the manifestations this disease provides me with, however, losing my memory is quite another thing. The edge came closer and I was ready to go on over. I am prepared to die, as it were, but I prefer to live right now. I have a lot of unfinshed business to take care of. Grandchildren to spoil and love, family to love, and friends and spiritual brothers and sisters to love as well. I have been saying that a lot lately to those around me. I love you. Simple words but powerful in their meaning. I want everyone who has touched my life to know how much it means ot me that they are my friends and family and that I love them all.
Not to get maudlin here, but the edge was there, all I had to do was give up. I can still see it. However, I have firmed my resolve now and feel much better about it. I am going to live my life and watch those grands grow up into young adulthood and be there for their important events. I have seen the other side, almost wanted to go there, but now I am determined that I am here, I am living, and I refuse to succumb to the edge. The precipice is still out there, waiting… for how long who knows? In the end, I can only think about today and what I have to live for. That will sustain me. Sharing my love of God with others, helping friends when able, and loving each person who is in my life. These are the things that are important to me.
I am glad I saw the edge. It knocked me out of the blue funk and back into the land of the living. Praise Jah for all the friends I have and for the will that was given me when I was at that low point. Thanks for the encouragement you gave me and this life that I am trying to improve to show You that it is not in vain. You alone are the Most High and You have given me the strength to continue. Thank you Father.
This week I found myself reflecting on several changes in my life recently. I do this on ocassion, it really helps to define the goals in progress and put a perspective on what I need to be doing. The hardest part is looking at the picture, warts and all, and evaluating the pros and cons of each thing. This can be hard, but therapeutic as well. It is not narcicisstic in the least, since it is for the betterment of myself and those around me.
A magazine I read recently had this to say about life, “”Happiness comes, not to those who seek it for themselves, but to those who seek it for others.” 8/1/2010 Awake. This statement is simple in itself but also profound in the meaning. I have actually been somewhat isolated because of a variety of reasons lately. I am sure I do not need to expound in the reasons why. However, I am in need of becoming more people oriented again.
The plain truth is I have become more isolated and that needs to change. I began this process by attending the all class reunion at the end of July. I have also visited with family I have not seen for a long time, and been around my grands as often as possible.
This is a beginning. Now, I need to move forward with the impetus that has been started. I have several ways I plan on doing this. One is to try to make every Christian meeting every week if possible. When not possible, I will tie in by phone so I get my spiritual meals and can become more active in the ministry again. When possible, I will preach in the field and help others to attain to everlasting life. I used to be so active and loved preaching, but due to a viariety of reasons, I have allowed myself to become stuck in a rut and not do as much as I would like to.
So, to meet this goal, I will be studying my bible again, and learning more each day as I get myself off the couch/bed and back into life. Even if I only read for five minutes and reflect on it, it is better than I have been doing. I know this is the most important thing I can do in my life so now the implementation is of the upmost importance.
This is a goal that I plan on working on in the days to come and see how much more I can praise God for all He has done for me, by sharing the bible truths with others. It literally can mean life to those who I can teach and life for me as well.
I will write how I am doing as time goes by and hope to be a better Christian by the end of this goal.
It all begins with one step… here I go….
That one word says it all! I have not been well lately, in a flare, and now my back has gone out too! I have to rant about it here though, since my family has seen fit to tell me to quit talking about the pain and buck up and get over it. Hence, the other reason for the one word title.
Apparently, discussing your pain and feelings about it is not allowed. You have to emit sunshine and rainbows and keep the other things in hiding, behind a smile to pretend all is well. Basically, it means that they are sick and tired of hearing about the issues I am having. If they think they are sick and tired, how do they think I feel? I guess that it is a moot point.
So, like the good little wife and mother I am, I will trudge ahead, doing my work and not uttering a sound of dissent, or even resting up. In the end, I guess I can relax when I am dead. Yes, this is a pity party in a way, however, it is also a sad fact that those of us with chronic diseases deal with a lot. No one wants to hear about our struggles. No one wants to hear our pain. No one wants to deal with the issues. We are forced to smile and pretend and then we get sicker, because we are trying to push it all back and in the end, it always comes back and gets us. So, the moral of this story is, I will trudge forward, but when I am flat on my back, do not expect me to jump up and continue, because it is the aftermath of the trudging I did when we were all pretending that nothing is wrong.
It is a sad commentary on those of us with lupus or other chronic diseases when we face this type of behavior in the world, yet we expect a warm environment at home and sometimes, we do not get it. I am thankful today, that I have this blog where I can vent and rant against this type of thing, and hopefully share with others who suffer the same types of problems. In this healthy way, I can get it out and let it go.
Thanks for letting me vent…
This is a repeat perfomance of a blog I posted a few weeks ago, but it bears repeating because it is a topic all of us with chronic diseases have to deal with on a daily basis. I did add more to it so it is not entirely the same post as before. Please read and understand us better… thanks!
It is just another day here in my life. I have had a difficult week. This flare is really causing me pain in my joints and in my head. I have gotten out and tried to do some things this week but the heat is also my enemy. Yeah, I know, I gripe all the time. For you normal people, it would seem that way. For those of us with these diseases though, griping is our way of letting the anger go, the anger that we have these diseases, they are incurable, and we have to live with them.
This anger we feel, because some people misunderstand our pain for laziness, and think we want to get the attention. That is not true at all! We are genuinely ill and with no cure, we are facing the rest of our lives with uncertainty. The wars raging on the inside of our bodies are not visible on the outside but they are still there, causing pain and discomfort.
So, do not judge us, please try to understand us. We cannot “buck up” and overcome our fatigue, pain and disease. If we do that, we are setting ourselves up for a backlash from our bodies. To a degree we can buck up, but the results are often days of pain following. We have had to learn to listen to our bodies cues, and if it says rest, we rest. If we are able to participate, we do that as well. We make plans knowing that we may or may not be able to follow through with them.
So please, try to understand and do not pressure us to do things or think we are less because we cannot do certain things on certain days. We feel bad enough without judgment from others. You see, stress can tilt the cart over even faster because we are made to feel inferior. Please listen, read and try to use empathy when dealing with us. We want to do the things others can do! We wish we could do things when we want to do them! It just is not possible to do it all the time.
We kick ourselves enough for our own inadequacies, we do not need another person kicking us too. Thanks for taking the time to read this and hopefully understand a little better why I may not do all things YOU think I should and can do.
Ok, so I admit it, lately I have not been blogging. However, the reason are many and also why I needed to be blogging again… a paradox but true. You see, I am in a flare and it has been particularly ugly. That being said, I have also been on steroids again to treat it.
I have been feeling pretty bad. Even with prednisone. No matter what I am taking. It sucks. Big time.
This flare is making me miserable and no getting away from it, it is a bad one for me. I cannot move at times and I lay down and sleep at all times of the day. I am having pain in my joints so bad I cry. I hurt when I drive, my ankle joint hurts. I really have downplayed it but this is a bad one. Add the misery of this heat and humidity, and I feel like never getting out at all.
Many of my fellow lupies have been having issues too, so I am not alone. This disease will not win!It can take my life, but not the living of it!
I know, I am complaining again, but if you felt like I do, you would be crying I tell you! Normal people have no clue how painful it can be just to get up and walk to the bathroom. Simple acts, like getting in and out of a car can bring excrutiating pain in the joints and therefore, are not to be done unless absolutely needed. Fingers throb in pain from the act of typing. The headaches from the prednisone tapering off are horrible! Now, add to that, having to try to act like you are not in pain, and you have my life.
My family is supportive in so many ways. My sons seem to cope better than my daughter, but they get it, all of them. Some days their mom is out and about and having a great day, and other days, you cannot get me out the door. Plans can be made, but only with the disclaimer that I may not be able to do them when they arrive.
I have to try to keep all the doctor appointments in line and make them but if they are not on my calendar, I forget about them. The memory is having issues, not like alzheimers, but all of my memroy, sometimes, odd bits will be forgotten, then reappeaar again. No rhyme or reeason. I hope the neurologist will get to the bottom of it. I have my emg this week, oh joy… and of course, the moving. Gee, wonder why I am so sick?
I am sorry if this is negative, but it is truthful and if I am not truthful, then I am lying to myself.
The bright spots in my life are my grandchildren. They give me a reason to hope, to believe, and to live. I am blessed to have them! I am thankful to Jehovah for them every day. My friends are another of my blessings. I have some outstanding people in my life who help me in so many little ways that they may not even be aware of doing it. They are my heroes and keep me fighting each and every day.
I guess I hope that if someone reads this and is one of the “normals” or people without lupus, they would see that life in our shoes is not pretty, or without substantial pain, but it is lived despite these things. I used to like helping others when I was normal, now I am thankful for those around me who give me help when I need it! I may look like I am not sick, but the war inside my body rages on and it is up to me to decide to have a good attitude or not. I cannot control the disease, however, I cannot let it control me. Yes, it hurts, yes, it is hard to live with, but I refuse to let it win!
I seem to be a little flighty tonight, but that is also what it can do to you. It is called brain fog, and it is a medical condition associated with lupus. This rapering down on prednisone is rough too. Forget about my fat “moon” face and the unwanted weight gain, the fact that the pain returns as you taper down is enough to make you cry! Then the mood swings from the drugs is there as well. It can be up and down and all around and if this is rambling, you can see how it can affect us! It sucks. Lupus sucks.
For today, I am choosing to be happy, and smiling, and loving. If I try hard enough, maybe the pain will give me a few little breaks and I can feel as normal as I can for a few minutes! If not, I will smile through it and wait until I see my neurologist and rheumatologist this week and see what they think… I will keep you updated!