Letter to friends and family

Standard

I have read this many times before but found it again and thought I would share it. It is written so well and expresses how lupies feel in general… I did not write this although it fits me well…

Enjoy!

A letter to be shared with friends and family
by Theresa Stoops in Florida

WHAT YOU SHOULD KNOW ABOUT ME

My pain – My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is not well understood, but it is real.

My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

My forgetfulness – Those of us who suffer from it call it brain fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.

My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

My depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from Chronic Pain as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My ability to control my appetite is broken, and nobody can tell me how to fix it.

My need for therapy – If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot- filled. If I can stand the pain, regular massage can help, at least temporarily.

My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, weeks, or even months. In fact, the good days are what keep me going.

My uniqueness – Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else. I hope that this helps you understand me,

I have shared these thoughts with many “Lupies”, as we call our self, and they agree with me. So when you see someone at the store who gets out of the Handi-cap space and they look fine — Do not judge them as you may Not know their Inner pain.

==== And always remember I LOVE YOU! ====

Angry days

Standard

Hello everyone! I hope you are all pain free and doing good.

The title of this post says it all about the last few days. I am still sick with the flu. Fevers, chills, dry cough, runny nose, headaches and blah. Please do be extra vigilant to keep from getting this flu!! It is a misery and since those of us with autoimmune diseases are usually on immunosuppressants of some sort, hyper vigilance is called for. I thought I was being vigilant yet here I sit, three weeks into it and no relief in sight.

So I have been a bit grumpy, to say the least. I have several reasons. First, I am sick. No explanation needed there. Second, I have been sick for three weeks now. That will make you grumpy too. Third, after waiting over a week to see the PA at my GP’s office, I was not looked at for the flu, but instead they went by what I made the appointment for ONLY. That was acid reflux. Yep, I sat at the doctors and was told I would only be seen for what I had made the appt. for, nothing more. If I needed to be seen for the flu, I needed to make another appt. Same thing for my foot. Ok, the foot I can understand but the flu??? Oh, and since two immediate family members recently had cancer in the uterus and ovaries, I actually asked for an order to get ct scan done just to be safe. I mean, she was writing an order for a chest X-ray so why not? I told her why I wanted it. I was told that would be a entirely new appt and she would not write those orders for me! So, if I needed all these things looked into, then three more appts. would be needed. Seriously!!!

Now having worked in the medical field (nursing), I was flabbergasted!! I understand not addressing my foot issue, but to tell me no orders would be written for tests that I could get done at the same trip to the hospital was absolutely beyond my comprehension. Click, click print and done. Nope. When I said how much easier it would be to do them all at the same trip I was told ” people have to get them done at different times all the time”. Not exactly those words but actually ruder.

So, I have been toying with the idea of changing my doctor (gp) for a bit lately and today tipped the scale. I waited to see them even though I was sick, and have lupus, and yet I could not be treated for anything other than acid reflux!!!!

See ya family practice I have gone to for some thirty years!!! I will find one that actually treats their patients with compassion and caring!!! I have had enough!!!

First, I am on a VERY fixed income. Second, the hospital is in Dayton Ohio so I ration my gas and would like to make it all in one day. Third, I am a human being that typically will NOT go to the doctor UNLESS I am quite ill. You could even say slightly non compliant. If I make an appt. it is not a little thing to me. If I could afford all those visits in the first place, I would not wait until I have to be seen.

So, I got a handout about gerd, an order for a chest X-ray, and $83.00 poorer for wasting my time. This has upset me so much I came home and cried.

Now on to find a new doctor. My daughter told me of the one they see and I am thinking next month I can set up an appointment and see how it goes. I cannot afford another doctor appt this month. Sucks to be me right now but I will survive!

In the meantime, I can always go to the ER where they treat me with more respect and dignity then my family doctors “professionals”.

Still Alive

Standard

Well I am still alive and kicking here in Ohio. I must say though, this flu sucks. I have gone from vomiting and diarrhea onto fevers, chills, aches and coughing with sinus pressure. Yeah, it sucks to be me right now.

No matter that though. I want to ask that all my readers do me a favor please. Actually two. First, please pray for my friend Brian and his wife. They live in Tennessee. Their new baby developed an issue and while at the hospital, it was discovered there is a heart issue. The baby was airlifted to children’s hospital in cincinnati and is scheduled to have surgery. This sweet couple need all the help and prayers they can get! On Facebook, you can read their story at the page, “Lucas Strong”. Please keep this family in your prayers!

Second, I have another friend whose grandson has a rare form of cancer. He had a none marrow transplant and has declined steadily ever since. He is soon now to have no more pain but his family, including my friend who is his grandmother, are experiencing emotionally devastating pain as they let him go. Ironically both children are at cincinnati children’s hospital.

So I ask for prayers for these two families who are dealing with so many different issues right now. You don’t need their names, since I know God knows who they are. I thank you.

As I write this I am watching the snow plow clearing our road. We got seven inches of snow a few days ago and have received around three inches so far tonight. I think our mild winter last year is resulting in the snow of this year.

I will be seeing two doctors in the next week and a half. Hopefully I can get this flu over with and move forward again. I just have not been well and that’s why I have not been on here.

Stay safe and warm out there!! ~Jen

Emotionally Abusive Men

Standard

Thanks to another blogger for this post. I reposted it because it is so very true and if this helps one person out there, it will be worth it. http://betweenyesterdayandtoday.wordpress.com/2012/05/07/emotionally-and-verbally-abusive-passive-aggressive-men/

 

Do you find your partner losing his cool over things that are out of your control?
Does your partner blame and punish you for things that happen to him even though you had no role in it?
Does your partner bring up past issues to deflect you from the issue at hand?
Does your partner make accusations about you that have no truth to them?
Does your partner resort to humiliation, cursing and threatening you? Does your partner mock you, parrot you and twist your words?
Do you find your partner getting sullen suddenly and seem depressed or angry about small insignificant events?
Does he ignore the real issues that need attention and ignore them completely?
Does your partner complain constantly of you not appreciating him? Is he or never satisfied no matter how much  you try to please them?
Does he or she often curse life or others as being responsible for all their problems?
Do you find that he never takes up the responsibility of anything that happens to them?
Do you find your partner creating a world of his own and even if you show him a positive side of any matter, they tend to believe only what they perceive as ‘truth’?
Does he bring up past problems, difficulties and circumstances that he claimed to be over or had forgiven, only to throw them in your face when there is an arguement or he is in a rage?
Does he try to belittle you by bringing up things that you told him in confidence, and then use them against you to make you feel shame and guilt?
Does he show his pride in you for something you have accomplished, only to find fault in the same thing when his mood switches or you are in a disagreement

Does your partner use vulgar, demeaning language towards you?

 

Superiority—He is always right, has to win or be in charge. He always justifies his actions so he can be “right” by blaming you or others. A verbally abusive man will talk down to you or call you names in order to make himself feel better. The goal of an abusive man is to make you feel weak so they can feel powerful. Abusers are frequently insecure and this power makes them feel better about themselves.

Manipulates—Tells you you’re crazy or stupid so the blame is turned on you. Tries to make you think that it’s your fault he is abusive. Says he can’t help being abusive so you feel sorry for him and you keep trying to “help” him. Tells others you are unstable

Mood Swings—His mood switches from aggressive and abusive to apologetic and loving after the abuse has occurred.

Actions don’t match words—He breaks promises, says he loves you, and then abuses you

Punishes you—An emotionally abusive man may withhold sex, emotional intimacy, or plays the “silent game” as punishment when he doesn’t get his way. He verbally abuses you by frequently criticizing you.

Disrespect – Shows absolutely no respect for you, and women in general. He will put on a mask for the outside world, his friends and family to make himself look like the good guy, the all around nice guy, the helper, the boy-scout. But in reality, he is none of those things. He is a women hater and treats you like you are worthless.

 

Verbal abuse takes on many forms including criticizing, insulting, degrading, harsh scolding, name-calling, nagging, threatening, ridiculing, belittling, trivializing, screaming, ranting, racial slurring and using crude or foul language. Disparaging comments disguised as jokes and withholding communication are also examples of verbal abuse.

The passive aggressive never looks internally and examines their role in a relationship problem. They have to externalize it and blame others for having shortcomings. To accept that he has flaws would be tantamount to emotional self-destruction. They live in denial of their self-destructive behaviors, the consequences of those behaviors and the choices they make that cause others so much pain.

You will find, that even if you become sick, even with a chronic illness or god forbid terminal, the passive aggressive man seems to show fake compassion, no empathy, and will talk to you superfically and never be a comfort. He will not be your rock in your time of need. He will not inform himself about your disease like most normal husbands would do. He will not know what to tell other people if he is asked about you, becaus he wil not bother to find out for himeself. It is as though he puts on an act, tries to be the concerned husband, but in reality, he is resentful of you for becoming ill, and he will still expect you to carry the burden of the relationship even as you are suffering from your disease.

There can be a number of causes behind the development of passive aggressive traits in individuals. The most probable one is the growing up in a family or social atmosphere, where not much importance is given to an individual’s needs and wants, where expressing personal desires is not accepted and is taken as a selfish and self-centered nature. He would have parents that were overbearing and treat him like a child way into his adulthood. They have made decisions for him such as employment, relationships, education and so on. He is usually a mamas boy and is more comfortable being around women then he is around men. He is comfortable coffee clutching and gossiping. Being around his peers, other men, he feels inferior, insecure, that everyone is doing better then him. This is usually his own guilt, although he will never ever admit it. He knows he is a an inept husband and provider for his family.
Such an upbringing, plants a subconscious feeling in the individuals, like desiring something which they want is unfair and unacceptable. In such situations, children contrive to protect the relationship with their family members and friends which they cannot afford to jeopardize. As the child grows to be a man, out of a deep rooted fear, he will stay loyal to his parental family while putting his wife/partner down just to make them happy. He will likely be disloyal to his own wife and hurt her just to please the people that raised him, regardless of the devastating circumstances this will have on his wife. He will allow their disproval to come before the women he loves, their opinions become more important to him then the opinions of his wife, the women he loves. This is a disturbing picture, this is not a man by any means.

People in relationships have conflicts. But there is a right way and a wrong way to resolve them, and no matter what the other person does, no matter what a person’s “issues” are, abuse is the wrong way. Emotional cruelty and abuse are choices. A man can choose to be abusive or choose to be non-abusive; he can choose to be honest and straightforward, or passive-aggressive and covert, and no matter how hard a man tries to blame his partner, there is no justification for abuse.

If you are a victim of emotional abuse, you have to wake up to the fact that this person *does not love you* and probably hasn’t loved you for a very long time, if ever. Because the truth of the matter is, someone who can be emotionally cruel, malicious, and compassionless with people who have given him their love and their trust, is so absorbed in self-hate that he is incapable of loving himself, much less anyone else. What the abuser feels is obsession, not love.

If you find that you are having to explain the basics of respect and courtesy to a partner – if you are finding that he just DOESN’T SEEM TO GET IT, when you try to explain why his behavior or actions were disrespectful – run far and run fast. People who are capable of maintaining and contributing to a loving, supportive, healthy relationship, DON’T need to constantly have the concepts of respect, compassion, and consideration explained to them.

Just because he admits his behavior (and WATCH – some abusers are VERY good at acknowledging they did something without apologizing, or admitting there was anything WRONG with the behavior.), does NOT mean he is willing to change it, that he will not repeat the behavior, nor that he even believes he did anything unacceptable, hurtful or wrong. DO NOT take admission of an act as a sign of integrity, acceptance of responsibility, a show of remorse, or an indication of genuine caring, unless you see EXPLICIT behavior that demonstrates it.

It is NOT wrong, or unhealthy to want someone to love and care about you and care for you, and to want to reciprocate. It is only through this kind of openness that we can acheive true intimacy with another individual. And two emotionally healthy people, CAN do this without becoming co-dependent. Unfortunately, abusers violate the trust that this kind of relationship requires, and are incapable of true intimacy. They want you to be dependent. People who ARE capable of genuinely loving you in a healthy and safe way, DON’T WANT TO HURT YOU, and do not DELIBERATELY DO THINGS TO HURT YOU. They don’t play on your insecurities and they don’t wage psychological warfare on you. They don’t blame YOU for all the relationship problems, and they don’t fabricate problems just so you can be the scapegoat.

People who love you will treat you with respect, consideration, courtesty, honesty and compassion. If you are with someone who matches the abusive behavior that you just read, get help. The sooner you wake up to the fact that the relationship is unhealthy, and move on, the sooner your life will improve.

You Judging Me?

Standard

I just posted this as my facebook status because, well, I heard there are those who are questioning my doctors in the care they are giving me. So, in the spirit of letting them know how I feel, here is my retort:

Ok, this is for the people who think I should not take so many medications and that the medications are the reason I am so sick, well, think again! When you get a medical degree and can tell others what they should take, then I will listen to you. Until then, I prefer my specialists like a neurologist, an opthalmologist, a rheumatologist, and others who form what I call my “team of doctors”. Yes, they all  share what is going on with my disease. Yes, they all know what meds I am on. And guess what? They all agree to the care I am receiving. So, if you want to discuss my disease and care, please have the decency to call me and get the facts first before judging me! Thanks!

Seriously, that is what I said. What do you think? Too hard on them or too easy?

Coffee

Standard
English: A photo of a cup of coffee. Esperanto...

English: A photo of a cup of coffee. Esperanto: Taso de kafo. Français : Photo d’une tasse de caffé Español: Taza de café (Photo credit: Wikipedia)

Coffee is a unique thing to each person. When I was younger, it would wind me up and send me out to face the world with a bundle of energy. It was my energy! As time has progressed along with my age, I have found that my reactions to coffee have changed as well.

Coffee now is not the energy maker it was in my youth. I have found it to be the opposite now. I can drink a pot of coffee and go to bed and sleep. I mean, sleep really well. It seems that as my body changed with age, I have developed to the point that stimulants are no longer stimulants to me, they act as opposites now. Crazy, huh?

Conversely, when I take a narcotic pain medication, it reacts like a stimulant to me. I become energetic once the pain subsides. I am not sure how or when it happened, or even why, but I accept it as just being my unique self with strange body reactions. To think it all started with that first cup of coffee…

Itching Updates

Standard

Since I first posted “This Infernal Eternal Itching” I have been amazed at how many people out there, with and without lupus, who experience the same thing. From what I gather, their doctors are at a loss as to why it happens. Mine are.

My itching comes and goes. There are times when I feel like I could scream because of the itching and then there are weeks or even months go by and I do not have it at all. It would be nice if some doctor somewhere could figure it out. For those of us who suffer, we find new ways to deal with it. Please consult your doctor if it persists.  They may not have the answer, but they could help you to get relief.

I will say that it is nice NOT to be alone with this. I used to think it was all in my head, and that I was crazy. I now know that itching seems to be consistent among some of those with autoimmunes. I hope that you each can find relief! I am trying to myself. I do have a question for those who experience this: Do you find it gets worse at certain times of the year? Personally, I don’t see a correlation in mine but it does raise the question.