Cats and chronic disease

Standard

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!

Blues

Standard

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!

 

Winter has arrived

Standard

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!

 

Don’t Say That (borrowed from Kendra)

Standard

Borrowed from Kendra’s blog this is a must read!

Thanks Kendra and cure4lupus.org for posting this on your blog. I “borrowed” it because it is so true. I also added a few of my own to it as well. Thanks so much!

Don’t Say That

Some very well intentioned family members and friends of Lupus patients can do and say things that can frustrate and hurt the patient. Here are a few examples:

“Lupus, my cousin has that, it’s not that bad.” – Lupus is very different from person to person and can even change drastically in the same person.

“Feeling pretty good today?” – This can make us feel like we are disappointing you if the answer is no.

“You look like you feel pretty good” – Looks can be deceiving.

“How do you feel?” – It’s not that you should never ask this, we just get it ALL the time, sometimes we just want to be a “normal” person that is not focused on Lupus 24/7.

“It must be nice to not have to work.” – We would not only gladly exchange our illness for work, but those of us who have been disabled by it, miss working and contributing in that way.

“You just want attention” – We certainly don’t want attention for this. A lot of times we get embarrassed by the focus and attention for something not only negative, but something we have no control over.

“You never want to go anywhere or do anything” – Believe us, we wish we could a lot more than you do! Please understand that we just aren’t always capable.

“I heard (…) cures Lupus” – It doesn’t matter how you fill in the blank, just don’t say it. Everybody and their brother has some “miracle cure” Number one we have tried it all already, and number two if it really cured Lupus it wouldn’t be a secret, we would know about it already!

“All you need is…” – More sleep, this vitamin, more exercise, etc. It doesn’t matter how you finish the sentence, just don’t say it. People are constantly offering us unsolicited medical advice. Unless you have a medical degree, we will stick to our doctors’ advice, that is enough to deal with!

Complaining about trivial things – Please use our experiences to learn to value the important things in life! Complaining about stupid, meaningless things can feel like a slap in the face.

Talk only about Lupus – While we do need to talk about it sometimes, we get real sick of it real quick. Sometimes we just want to do something fun and silly and try to forget we are sick for a while.

My adds are:

“Oh, yeah, right, you cannot help me” This implies that we are lazy or incompetent and do not want to be of assistance. In fact, the opposite is true. We were more than helpful when able, and if not able, we need respect as a person with feelings. Do not belittle me.

“You look like you have put on a few pounds” This is one that I get from time to time, more in my past. This implies that I am out of control eating and doingthis to myself. In fact, I take oral and IV steroids that cause me to balloon up each and every time and pointing out the obvious only makes my self esteem hurt. I know I have gained weight and I want to get it off, but I am sick and need these (poisons) meds to survive. Please think before you speak.

The best advice is to follow the patient’s lead. They will communicate what they need and hopefully understand that you are just trying to help even when you say the wrong thing.

Old Post called Depths of Despair

Standard

Depths of Despair

Recently, I am having some real issues with my health. Lupus has been flaring, despite the best efforts to keep it under control. For the first time since I have had this disease, I felt out of control and ready to give in. Give in to what, you may ask. I was ready to give up the fight and give in and have peace. Depressed, yes, who wouldn’t be when yoru body is wracked with pain, your joints hurt, your fingers are swollen, and you can hardly walk. This time, though, it was different.

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.

Reflections

Standard

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….