Lupus Living!

2011-12-07T11:38:00.001-05:00

Remember to live well and Love Your Lupie!

2011-12-07T11:20:00.001-05:00

Lupus and Constipation...

2011-11-05T06:27:00.003-04:00

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2011-11-05T06:27:00.001-04:00

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2011-09-24T20:16:00.001-04:00

This was a very painful and feverish day. Hope to start Benlysta very soon.

Lupus and Infections

2011-09-10T23:56:00.002-04:00

Earlier tonight, Andrew and I were at a family member's wedding, where we had a great time. It was our first time at a morning wedding. I usually like to have my honey all to myself on the weekends, but this was nice as well.
As Lupies, we have to be careful about what and where we eat. Actually, one of the favorite things that people like to do when they greet is a major source of infection transmission, and that is handshaking! Actually, it is safer to greet cheek to cheek, as opposed to handshaking, especially if the person you're shaking hands with doesn't wash their hands after using the restroom!
As Northern Americans, we use the most antibiotics, and we are sicker, and die a lot sooner than people in the countries we refer to as "third world" countries. For instance, there is something that Northern Americans do, that people in Asian countries do not, and that is walk into their homes wearing the shoes that they wore into the streets! The streets that we walk on have animal feces, urine, blood, and God only knows what else! The rains may wash some of it away, but it's still there! Then, we walk into our homes, wearing these same shoes, walking on the floors, carpeting, ect. Many of these homes have children that play on these same floors. You teach your child not to eat off of the floor, but we all know that babies usually put everything in their mouths, especially their hands, which more than likely has made contact with the floors! A child that gets infected with E. Coli will more than likely die of the illness! Adults may as well! I could go on and on, but I think you get the idea!
We don't wear shoes in our home and we don't allow our guests to wear them either. It's easier on the rugs and easier on my immune system, which is already compromised! If I do make contact with someone, I use my hand sanitizer immediately! I use Clorox Cleanup after cleaning chicken, especially. I use Clorox wipes to clean door knobs, cell phones, and every other object that is frequently touched. I'm a germaphobe, but not a OCD nut!
I had been wanting to write about this subject for quite a while now, and I'm glad that I did.
Love your Lupie! Stay well!

Lupus and Heart Damage...

2011-09-05T13:02:00.000-04:00

The information displayed in this blog are my own personal and truthful experiences with not only Lupus, but also my life. Please consult your healthcare professional before applying any treatments or medications that I may recommend.

This morning, I woke up with a pulse over 100, body aching, and even my teeth and gums hurt! A few years ago, I was experiencing palpitations and the awareness of my heart beating. I went to see a Cardiologist, and was subsequently diagnosed with Mitral Valve Prolapse and Tricuspid Valve Regurgitation, likely due to Systemic Lupus. This disease is relentless! I guess that's why it's called Systemic, because every single organ system in the body is affected or damaged in one way or another! I immediately shoved down nearly two bottles of water in an attempt to lower my pulse, and it did work, after a few minutes.
I went to see my Rheumatologist several weeks ago, and asked that I be prescribed Benlysta infusions ASAP. I did the research on it, and I've come to the conclusion that nothing beats a failure but a try. All drugs have a 50/50 potential, but I feel that this drug may be my only hope. I wake up every day with a fever, and pain that doesn't even matter if I describe it. I have a life to live. I'm a woman, a wife, a daughter, a friend, and I'm just too happy to be in the state that I'm in. What ticks me off is that she, my Rheumy is dragging her feet, telling me that she doesn't like the drug and she doesn't like this and doesn't like that, and wants me to read this information that she's mailed to me, as though I'm incapable of doing my own research! I was soo fired up at her I could have reached through the phone and slapped her! Well, what about the fact that I don't like the fact that I wake up every morning in pain, unrested, swollen, with fevers, and everything else that goes along with this lovely disease! I think she needs a dose of reality, and a taste of what I have been going through for all these years! She couldn't survive a week in my shoes! I usually wouldn't wish my own worst enemy this disease, but I wish it for her, for just one week, maybe then she'll shut up and stop dragging her feet where I'm concerned! I'm not usually this coarse, but I'm fed up with this kind of behavior from healthcare professionals. I'm in pain, and I'm tired of it, and I have found a drug that may help me, and there's this one idiot who is trying to stand in the way of what could be relief. Would you not be angry if this were you?

Lupus and PTSD

2011-09-02T20:56:00.001-04:00

This has been a very rough week for me, emotionally and physically! On August 29, 1993 I was involved in a major car accident in NC. I was driving from NJ to SC, when the transmission malfunctioned, causing the car to speed to speeds over 120 miles per hour. I traveled through nearly the entire state of NC weaving in and out of traffic. In the end I flipped the car 4 times, demolishing a truck and a Fleetwood. I ended up on the opposite side of the highway, right side up with about 50 NC state troopers around me! Even though the car stopped, I was still going over 120 miles an hour in my mind! I recall that they had to restrain me on the stretcher! I just wanted to escape, even though I have no clue as to where I would have gone!
While I was on that road driving, all I could think about was not killing anyone! I saw children playing in the backs of minivans, and there were even some people who were attempting to block me, thinking that they were helping the police! The 911 operator that helped me through most of that ordeal was Ray Dixon of Rocky Mount, NC. His voice was calm and encouraging. I felt as though he was right there with me. And those NC troopers were simply amazing. I get choked up just thinking about it!
People often say that time heals all wounds, but that is simply not true. As time went on, I would wake up every morning with the same nightmare, that I was flipping over and over in the car! Arthritis began to set into my bones. It was later discovered that I had a broken collar bone and rib, among a few other things. The emotional toll this accident took was nearly unbearable. I ended up seeing a therapist. I lost weight, I just "went inside myself" so to speak. I lost weight while battling frequent bouts of pancreatitis, as a result of the steering wheel injuring my abdomen. After that accident, my health began to dive. After symptom after symptom, and illness after illness, finally the diagnosis of Systemic Lupus was made. Dr. Adessa believes that the trauma of the accident brought on what was sure to come at a later time.
Even though this accident was 18 years ago, sometimes it seems like it was just yesterday. Even the sound of a car crash can trigger my symptoms! I guess it's similar to when a Vietnam vet hears what he thinks is a airplane flying too low.

Lupus and Living Strong

2011-02-24T00:51:00.001-05:00

It's not always easy being strong. I still have some days when I feel as though there's nothing wrong with me. I wake up feeling no pain, with energy, and no fever! Then, there are days when I just do what I have to do to push through it. Some days seem longer than others.
I draw strength first and foremost from Jehovah. If it were not for Him, I would have been dead long ago. After all Jehovah's done for me, I feel compelled to honor Him with every thing I have, until I am no more.

Lupus, Love, and Losing My Mind!

2010-12-24T01:29:00.000-05:00

Having Systemic Lupus and trying to live a normal life can be a challenge at times. I have always loved a challenge, but sometimes the Lupus whips my tail! There are days when I feel as though there is absolutely nothing wrong with my body, mind, and soul. Then, I have those days where my memory fails me. I feel as though my brain is a computer with a virus, and certain files have been "corrupted", or somehow suddenly "missing"! I used to be that person that was always at least 15 minutes early, and prepared for the task at hand. And now, I'm the, "Well, let's pencil that in." I don't like not knowing from day to day how I will feel as life passes through. Sometimes I feel as though I'm in a fog.....I could fall asleep during a flare, and awaken not realizing whether or not I slept five minutes or five hours!
I have to say that I had a fairly decent year until the weather changed recently. The sudden change from warm to cold seems to have sent my body into some sort of shock. The worst for me is the lack of energy. Several weeks ago, I was able to work part-time, and even help a new loved one by painting her apartment! What's frustrating is that I only have a small bedroom left to do, and I just can't seem to get enough energy to go over there and finish the job. I'm one of those people that likes to work until the job is done! Somehow, in my mind, it's unacceptable to "take a break". In my mind, it feels as though I'm "slacking"! I am one of those women that has to keep her home clean and decent at all times. I never leave dishes in the sink. I mop the floors just about every other day, and we don't wear our outside shoes inside our house! And as soon as we return home from the outside world, the first thing we do is come inside and wash our hands. I guess I'm a little anal-retentive, and a whole lot germaphobic! In addition, I just cannot leave the house unless my bed is made! I don't care how ill I get, I will never let my husband find me in a state of uncleanness. That's just how I feel I should be, even though it takes a lot of energy when I'm not well.
I also have this weight gain phobia. When I was younger, my mother would humiliate me by calling me degrading names and such. Even though my husband loves me no matter how I look, I find that I'm very hard on myself when it comes to weight management. I'm careful with my diet, especially during the times when it's difficult for me to exercise. I make sure to keep up with my water and fiber intake, and I will only take steroids in times of a Lupus crisis. Yes, there is a difference between a "Lupus flare" and a "Lupus crisis." With Lupus flares, I mostly handle them at home with assistance from Dr. Adessa. With the Lupus crisis, I very reluctantly get admitted to the hospital due to the fact that I usually dehydrate due to vomiting and appetite loss. During these times, I have no choice but to be admitted to the hospital, as all the meds have to be administered IV until I am able to tolerated anything by mouth again. There are no two Lupies alike. In my case, a Lupus crisis begins with symptoms of gastritis, like vomiting and appetite loss. The pain and fever usually tag along for the ride as well. Nowadays, I usually run a low-grade fever on a daily basis, and Lupus fevers are not reduced by meds like Tylenol or Motrin, or anything else for that matter. If it's not that high, I can usually just work around it. If it's too high, I'm forced into bed rest. With Lupus, your body dictates what your day will be like. You could make all the plans you want; if your body says "no", then all bets are off! The best thing to do is just go along with it, as though you really have a choice in the matter anyway!
I would never lie and say that sometimes I get downright angry with my body, as I feel that it has somehow "betrayed" me! It sounds crazy, but this is my blog. This is my story, and this is my truth! The disease may be disabling at times, however, having the courage to share my journey in the raw is somehow restorative and empowering. I often look back and wonder why I didn't have the courage to share my trials and triumphs from the very beginning! Some days I have Lupus, and some days Lupus has me. I've finally learned that it's perfectly OK to just "give in" to it so that I can live to fight another day! It's OK to lie down, as long as you have the desire to get up again. Blogging about this illness is not only a way for me to be expressive, it's also a way for me to be informative. If even one person is somehow assisted or uplifted by what I have to say, then laying myself bare in this blog is very much worth it.
I thank you all for your support and prayers. Andrew and I are more and more in love every day, and most days his love is all the medicine I need.
Live well, and please love and support our fellow Lupies. It can be a lonely world for anyone with this illness. That's all Lupus is, and illness, not a death sentence!

Lupus and Meds . that Hurt, Instead of Helping....

2010-12-13T15:29:00.000-05:00

For years I had been taking this medication called Reglan for GERD and Gastritis. Then, over a year ago I went to see my Gastro. that I had been seeing for many years, Dr. F. Devito. I told him that I felt as though I needed to go back on the medication, and he just sort of brushed it off, and put me on Nexium. The next thing I know, there are these commercials telling patients that if they had been taking these medications and experiencing certain symptoms, that they should stop taking the drug immediately and call this 800 number.
As though Lupus isn't enough to cope with, now I have Tardive Dyskinesia. When the symptoms are coming on, the first thing that comes on usually is, my face turns to the side, then the muscle spasms in the neck, that travel down my back. I also have tremors, and jerking of either my whole body or my hands. It's difficult to function at times. Alprazalam does help sometimes. Muscle relaxants are a joke! However, some doctors have a way of protecting other doctors. I'm being treated for TD, but my new Neurologist is reluctant to document exactly what I've told her. Many times, when new conditions arise, everyone wants to blame it on whatever. Now, some want to blame this "new" condition on Lupus, and not the Reglan that I took for over 8 years! Interesting!
So, it's been since June that I stopped taking the Levaquin, and my knees still swell, ache , and pop every day. My knees were the one area of my body that didn't really bother me, and now that's taken away as well.
I'm just tired of being in pain, and all the GI upsets. No matter what I do, the Lupus seems to figure it out, and do me one even better! Today, the Lupus wins. We shall see what tomorrow brings.

Lupus and Love of Self....

2010-10-22T01:50:00.001-04:00

A few weeks back , I travelled to Florida with a male friend of our family. We went to see a mutual friend, and her family. We had the best time there with Bernie and her family. I just love how close-knit they are, and they were very hospitable! On the way down, we stayed overnight and my Dad's and we did the same thing on the way back. I always love to see my Dad, any way I can. He got a chance to smoke my friend over, and I just loved being with my Dad. I just adore him!
When we left Bernie's home, we travelled to Tampa to pay a visit to my Cousin and her family. It had been a while since I have been there to visit with them. There is a new little one in the family, and I was especially happy to see her cute little self! My cousin, however, initially seemed happy to see me, then I began to sense some strange distance between us. When we were teenagers, we were really close. I understand that when people mature, they tend to "grow apart", however, I believe that some individuals choose to create distance between themselves and their "loved ones." I quickly began to see how fortunate it was that we had only planned to stay overnight and be gone the very next day. I know that she is just as private about her personal relationship, as am I, but I got the strangest feeling that there was something going on. I just couldn't put my finger on it. Lately, there hadn't been a lot of conversation between us. One minute, she seemed upset, and the next. I wanted to help, but I didn't know what or how to. We have a lot of things happen in the family, but everyone has to work that out for themselves.
My marriage to Andrew is awesome, and I could only pray for the same for those that I love and care for. In addition, while I was visiting with her, we were taking photos, and whatever. Then, she said some remark about my sending her so many photos of myself. I also sent ones of Andrew as well. Anyway, the next thing she said was, "You must really love yourself!" So, I got to thinking, perhaps this could be a part of what's going on in her world. Self love is essential in anyone's life, especially that of a woman or young girl. If a woman doesn't love herself, she will more than likely suffer from low self-esteem, and pass those sad, and lackluster feelings onto her children. The answer to that statement she made, is that I do, indeed love myself. I didn't always, in the past, but I do now, and I will forever more, no matter what! I want to exude confidence; not conceit. I am in a really good place in my life. I love myself. I love the life that I live. I love my husband, and I love the way he loves and treats me like a Queen. I wear make-up because I love the way it enhances my natural beauty, and I am not ashamed to go bare in the presence of my husband, because he loves me regardless! Sometimes a woman has to put the best on the outside, even if she doesn't feel it inside!
Loving yourself is a part of living well, so love yourself and love your Lupie as well.

Lupus and Real Pain...

2010-08-30T21:29:00.000-04:00

Today was just one of those days! The pain lately has just been nearly unbearable! The thing that drives me crazy sometimes is that doctors can forget that the physical appearance has absolutely nothing to do with how a person feels inside. The bottom line is that I am a woman, a girly kind of a woman! I love to do my hair and make-up! I never leave home without looking a certain way. It's not that I spend hours in the mirror, but I have standards that I live by and that's that. Sometimes I feel that if I can just get dressed and put on some foundation, the rest will fall into place. No matter what, a Lupie has to do what a Lupie has to do! I have to be myself. I have to be a wife to my wonderful husband. I have work to do, so there's no time to just sit and do nothing because I have pain. I have to live with the fact that 99% of my day may involve pain! Very reluctantly I take strong medicine to deal with the pain. Every one with Lupus is different; there are no two Lupies the same, so you may be reading this and it won't necessarily apply to you. For those of you who are like me, just get over yourselves and take the medicine! Fight fire with fire...I had to learn that the hard way! I tried every thing from herbs, detoxing, you name it! I took soo much Aspirin and Ibuprofen that I jacked up my stomach! Lupus pain is deep, reaching down into the bones, the marrow of the bones! It is not only bone pain, it's also muscle pain, and even the weather can exacerbate the pain! I can predict the weather before I even get out of bed or turn on the weather channel! It's no wonder that Lupus and arthritis go hand in hand. I'm a young woman with the bones of an elderly person! Then there are those few days when I feel that there's nothing wrong! On those days, I tend to overdo it...I'm getting better about that nowadays.
I have a good team of doctors, with Dr. Kenneth Adessa as my Internist. He's the best! He really takes his time to figure out what's going on... not one of those doctors who sees you for 2 minutes and out you go, no better than when you came in!
To live with Lupus is a daily fight. I want to talk about something that many people would rather not discuss. There was once a time when I thought that I would rather be dead than suffer like this, having to take a cocktail of strong medicines to just get through the day. The way I grew up, when you fell down and got hurt, you got up, dusted yourself off and kept moving! Lupus changes your whole game plan....you can make all the plans you want, but if you wake up with a fever and pain that won't respond to meds, you have to stay put! Meanwhile, your mind is in a million different places, and you're feeling like a loafer, or a loser simply because you can't get your body to cooperate with your the plans you have in your head! So then, you learn to write nothing in stone! You learn to say things like, "I'm planning on it." " I hope I can make it." Whatever you do, don't give up on living life! Smile anyway! Cry when you need to. However, be careful who you confide in. Not everyone can handle the weight of the situation at hand. Some people get uncomfortable when they are presented with a problem that they can't poke a stick at. And trust me when I tell you, when you're chronically ill, you will quickly discover who your "real" friends are! Who will really show up if you have to call them at 2 am because you need to go to the emergency room, and you just don't have the strength to be alone. No man is an island.
Now and again those hopeless feelings creep in and gnaw at my soul. I just remember that although I may be physically alone at the moment, I am not at all alone in the grand scheme of things. Satan would love nothing more than to see you desperate and dead! Remember the plight of Job. Job lost everything he had, even his children, his livelihood, and even his so-called friends. His own wife encouraged him to "curse God and die", but he refused! His hope remained in the true God, Jehovah. He was even aware of the hope of the resurrection. He knew that even if he died, he would die to Jehovah God, and as a reward for his faith, his health was restored! He was even blessed with more children, and more wealth than he had before Satan afflicted him, with pain to his bones.
Even as I sit here in pain, I thank my God, Jehovah. No, I am by no means perfect. The last perfection witnessed on the face of this earth was that of the Christ. I thank Jehovah for helping me to see what I am made of, and for helping me to see where I needed to rely on Him even more than I did before. It's easy to serve God when you have health, strength, the love of a spouse, family, and a viable means of income. Now just imagine having none of that, and still managing to smile, and love Jehovah, and still thank Him and worship Him no matter what you have, or don't have. Fight with grace, dignity, and a smile. Fight like a tiger.
If this message has helped just one person, then I am grateful.
Live well and Love Your Lupie!

Lupus Living With Anger and Graciousness

2010-08-22T19:27:00.002-04:00

We had a wonderful meeting this morning. The Watchtower was about Graciousness and mildness for the most part. I particularly enjoyed the part where it mentioned that children should also be treated with respect. When I was growing up, it was unheard of! Respect was something that only adults expected from younger ones, even if they didn't earn it! As we read on, I was unfortunately reminded of a former associate of mine, Penny. I saw her last week after her Uncle passed away. Her aunt and I are still close, so I figured we were bound to run into each other. Seeing her only irritated me in a way I should have expected! She was blunt, arrogant, and irritating! I very reluctantly gave her my new cell number, and took her number, although I know that I will never call. When she approached me the way she did, I yielded because I didn't want to disrespect her deceased Uncle and family. After all that she put me through, there could never be a friendship between us ever again. My time is precious to me and life is short. She used me once and will never have the opportunity to do it again. The old me would have had some very harsh words for her, but this time, I was able to stay calm and quiet.

Having Lupus helps you to learn to "trim the fat" out of life, thus getting the best out of it. Sooner than later, you realize that if the people around you don't mean well, it's best to stay away from them, and make certain that they stay away from you.

The life I live now is very loving and quiet. I'll guard the love I live now with every fiber of my being. I have the best husband, a roof over our heads, food to eat, and best of all we know the Almighty God, Jehovah, who imparts us strength and protection by way of His Holy Spirit.

A few days ago, I had a revelation: I'll always be in pain, but what matters most is how I respond to it. Most people don't know exactly why we suffer, so the not knowing incites anger and frustration. Through accurate knowledge, I understand why, so I channel anger and frustration into something positive and up-building.

I'm still experiencing side effects from taking the Levaquin a few months ago. My tendons and cartilage in my knees are tender and swelling, so I'm going to bed.

Live Well and Love Your Lupie

Lupus and REAL Family and Friends...

2010-07-05T22:02:00.001-04:00

I spent a lot of good times in the cozy little house in the photo. I think I was happy as long as I wasn't at Annie Bell's house. No matter what I did, it never satisfied her. What I know now, that I didn't know then, is that she was always miserable, and there could never be any satisfaction in seeing another person be happy about any thing. She would be the bird that would crap on your car minutes after you got is thoroughly washed!
My Dearest Cousin, who was more like the big sister I never had, lived in this house. She and I would lie awake at night, just talking our heads off, sharing our dreams and innermost secrets. Tammy was my heart. I lost a huge part of my soul when she took ill and died. She left behind her then, 3 year old daughter, who is now 23. I've lost many loved ones over the years, and each time I ask the question, "How many loved ones can a person lose before they begin to feel that they will lose themselves?" The pain of death first hit me hard when I was only 3. The only Dad I knew was diagnosed with Stomach Cancer and died very shortly afterwards. Ironically, Pop Pringle died in the month of June the same as Pop Pop Gillens. In addition, they were close cousins as well! This fact was well concealed for many years. Family secrets are a big deal in the Simmons-Ravenell Family! That pain and insecurity remained with me for many years until I found my genuine family, that includes my Father. When Grandfather Gillens died, it felt just as painful as when Pop Pringle died. It ripped my heart out and made me physically ill. I don't even know how I made the trip to SC and back from the funeral! And to see my Dad grieving and crying rocked me to the core. His pain magnified my pain!
Today I was really sad, reminded of the abuse in my early life after watching the show, "Intervention". Any of these poor souls could have been me. I feel their pain, but I guess the difference is, I prayed, went to therapy, and focused my anger through weight lifting. The angrier I would get, the more weights I would lift. All of these individuals with addictions had similar beginnings and experiences as myself. So, instead of judging them or looking down on them, I feel deeply for them. I know all too well that it could have been me! It's easier to drown your sorrows and pains in alcohol and drugs, instead of getting down on your knees and purging your soul to the only true God, Jehovah. Even though He knows what we need before we even ask, it is important to show trust and reliance on the giver of life! Alcohol and drugs cannot give life! Satan uses these tools to not only destroy the consumer, but also the family and friends who are trying to love him/her.
The anger that surges at times is eased by the love that I am finally experiencing from my father's loving and supportive family, and my loving and devoted husband. I finally feel the love that I never thought I would have. I finally feel the security that I lost when Pop Pringle died. Finally, I'm not being discriminated against for being who I was born to be. I'm shown genuine affection and not being accused of having "AIDS". I feel that even if I did have the disease, my true loved ones and friends would blanket me with tender love and affection, and stay with me until the end.
I told my cousin tonight that after all these years of suffering with this illness and alienation, that if I should die, I would die with love and peace that excels all thought! My dad is the best dad! I'd kill for him and die for him just the same! I feel the same way about my husband! No one could ever love me the way he has, so if I went now, it would be with a smile on my face and a wonderful sense of accomplishment! I found my Dad, after years of sifting through lies and deception, and I found the truest and purest love of my life in my husband, Andrew. Thank you, Jehovah!
Live Well and Love Your Lupie!

Lupus and Depression....

2010-06-06T15:33:00.000-04:00

Depression can easily take a hold on me when I'm flaring. I can count on flaring every month, before and during my cycle. Pain is a major cause of depression for myself. It's not easy to talk about, but I have to. When I feel this way, I just want to be left alone; no phone calls, conversation, and not much of any thing else. I do pray, whether I feel good or not. I don't always pray for pain relief, I pray for the strength to deal with all the hell that comes along with this horrible disease, Systemic Lupus.
My husband is very supportive, but I don't always share my misery with him. I don't want him to worry, feeling as though he cannot help me, since he cannot relieve my pain and suffering.
Today, I'm battling the pain and fever, with the cramps, ect. He's in the kitchen, doing his best to keep the place how I like it. What a great guy! He brings me comfort foods, like fig newmans and coffee. I just love how he loves me, and promises his love and support no matter what. Makes life more meaningful.
I wish you all the best. Live well and love your Lupie.

Lupus and Levaquin...

2010-05-12T10:51:00.000-04:00

These days, I am forced to be sedentary. Last week, I started taking Levaquin 500mg for a sinus infection and bronchitis. By about day 3, I was feeling really strange, having trouble concentrating. By Friday afternoon, my legs and knees were swelling. My feet were also swollen. My hips and knees started hurting, but the knees were hurting the worse! I took my pain medication, but it didn't touch the pain!
When I got home, I took my pants off, and both legs looked and felt like tree trunks! I elevated them, massaged them, but by the next morning, not much had changed. My husband suspected it was the new Levaquin prescription, so we looked it up online, and sure enough there were pages and pages of people complaining about how ill they got after they took Levaquin, especially those with severe joint pain and torn ligaments and cartilage! The one piece of advice that I took was from the one person that advised resting the joints for at least ten days, or until the swelling and pain goes away, that is, if indeed that happens! Some patients that took this medication complained that the joint pain took two or more years to desist! Some individuals had to even have surgery to repair the damage to torn ligaments and cartilage! So, here I am, still with the pain in the knees, and my right hip. It's hard to walk, therefore, it's hard to do just about anything else! It's depressing! Lupus is debilitating enough! I know that Dr. Adessa does his best to help me, but one of the contraindications of this medications is giving it to people with joint problems. So let my pain be your lesson and stay away from Levaquin! This drug is bad news, even for people who don't have autoimmune disease!
Hugs and kisses. Love your Lupie and Live well.

Lupus and The Pain from the Past

2010-04-12T17:03:00.000-04:00

I'm watching the Oprah Show and I have finally decided to reveal online that I was raped by my first cousin Steven Gethers when I was only 3 years old. It was a secret that only certain ones close to me knew about, but everyone should know. Our past has everything to do with our current and future lives. For years I held in that secret, thinking time would heal all wounds. Let me tell you, time heals no wounds. An individual that has been raped by any one is traumatized, usually for LIFE! That trauma manifests itself by illness, whether it be mental, or physical. Statistics show, that most Lupus patients have had some type of trauma in their past, and most of the time that trauma resulted after RAPE!
I am sorry that I never blogged this before. I rather feel that it was selfish of me, in a way. Knowledge is power, and I have a noble obligation to inform any one who will listen. And if you are reading this message, please pass it on and tell someone, because this Foul Beast, Steven, is living somewhere among someone else that he will try to rape, as well. He did the same to a few other family members as well. My Aunt Yashima informed me of this, but she didn't tell me who the other members of the family were. In our family, this jerk was protected, and excuses were made for him by that particular aunt, his mother, Bert Gethers (Ritter), and god only knows who else!
I was left as an infant by my birth mother, Fannie Ruth Gethers (Rice). I was also abandoned by the man that I knew as my father as well. I was raised by my great aunt, who was wholly ignorant, and not very easy to communicate with. I was alone. I had no one, so this left me wide open for this predator. That's the kind of child a predator is looking for! The kind of child that no one is paying attention to or cares for. I felt like I had a hole in my heart and it was years before I was even able to talk about the rape. I feel bad about that now, because my story could have prevented this from happening to someone else!
For years, I hated myself and suffered from low self-esteem and wondered if I would ever be able to have a normal, loving relationship with any one. I did every thing I could to survive what had happend to me! Thank God I went to therapy and found Jehovah, most importantly. I could have been one of those women who slept with everyone, looking for love in all the wrong places, or doing drugs to try to drown the pain and anxiety that results from such abuse.
I was too young to fight then, but I would kill now to protect myself, if I had to!
I try not to hold hatred in my heart for these snakes who chose to do this horrible deed, but hearing stories like mine, and watching these predators talk about what they did to their victims, it just makes me sick!@#$!

Lupus and "Letting Yourself Go"

2010-03-19T23:42:00.000-04:00

I am sitting here watching TV with Dee. We practically spent the entire evening together. She figured she'd keep me company since Andrew is working late due to the power outages in our area, and the surrounding areas.

Earlier, we were out power walking and talking. I had a revelation while we were chatting. I can really see how women in general can just let themselves go, in a sense. We do and do for everyone else, always putting ourselves last on the list. Even when it comes to minor grooming details like manicures and pedicures. The attitude for some women is that once they have the man, they can let themselves go, because chances are, he's not going anywhere or looking at any one else. How wrong that thinking is! Men are visual creatures, and they are always looking, even when they don't realize it! I have personally discovered that when it comes to a woman's appearance, "it pays to be polished"! The very thing that you think goes unseen, is very much seen...from the toes to the nose. If you're in to pleasing your mate, that's fine, but don't forget to please yourself a little. You see, many times when we are sacrificing for loved ones, they don't often realize just what we have done. When you take a little time to do something special, it makes you feel special, and then you won't reach the end of your day wondering where all the time went, and feeling under-appreciated by those you exasperated yourself for. Besides, when you take better care of yourself, you can take better care of those you love, and when you smile, it won't be because you're just "putting the best on the outside", as so many women do because they feel it's their duty, or their job.

Now that I have this marriage and home renovation thing in full swing, it's not always easy to think of me, but I make myself do something special for me every single day. In addition, I workout to help release the stress and keep the body in check. Sometimes when women don't like what they see when they look at themselves naked, they just "cover it up." When you're married, that's not always feasible. I refuse to look in the mirror naked and hate what I see. I refuse to make love in the dark because "I don't like the way I look." I have discovered that when you let 5 pounds go, 10 pounds will creep up on you. If you don't take care of yourself, no one else will! Take the time to luxuriate in whatever it is that you like. Don't get rid of that dress you love so much, but can't fit into, just work your tail off and get back into it! You will feel ten feet tall once you do! Trust me, I've done it and I'm still doing it! Drink plenty of water. Take your vitamins, and moisturize heavily at night, especially. And when you eat better, you will feel better.

My hubby's home y'all. Mama's gotta go! Remember to love your Lupie and Live Well!

Lupus and the Snow

2010-03-19T21:52:00.000-04:00

For the god only knows how many times, we are getting pounded with snow! The cabin fever is enough to drive anyone insane! I maintain myself by reading, meditating, and chatting with a few close loved ones.

Lupus Medication Side Effects

2010-02-16T17:22:00.001-05:00

Lately, I have been taking the medications Lyrica and Prednisone. Before I knew it, I had gained a few pounds. Mind you, I've been overweight in the past, so any weight gain tends to alarm me. I've never had an eating disorder, but I have taken drastic measures to drop weight. Those days are long gone. Your body is not meant to "yo-yo diet"! When you suffer from a chronic illness like Lupus, you had better realize that you're skating on thin ice, and there's no room for screwing up. You have to take care of your body and your mind.
Well, one of the side effects of Lyrica is weight gain. One of the side effects of Prednisone is increased appetite. All of a sudden, it occurred to me that I was hungry a lot more than usual. I have seen other friends of mine literally blow up like balloons! They reminded me of the balloons you see in parades! I was always fearful of getting to a point where I would need the steroids every single day and have that happen to me. Well, the docs have been bugging me from time to time to stay on a daily dose of the steroids. Finally, a few weeks ago, I consented, but not for long! As soon as the weather clears, I will be tapering off the steroids and probably stopping the Lyrica.
I started taking these meds because the pain was getting to be unbearable. I had this constant burning sensation in my bones, late at night and most evenings, and when bad weather was coming. The meds are helping to take the edge off sometimes.
The fear of the weight gain is not all about vanity. Weight gain means buying new clothing and more pain in my knees when I climb and descend the stairs. It means difficulty working out. It means covering up when I prefer otherwise.
I satisfy the frequent urges to munch with fruits and nuts, like grapes, blueberries, cashews, and pistachio nuts. They are very filling. I've stopped the butter pecan cold turkey! That was like taking crack from a crackhead! LOL!
Also, I've increased my water intake. I've noticed some trimming, but I won't weigh myself. I don't need the scale. I go by how my clothes fit. If I pull out the scale, I might be tempted to get on it every day, and I don't want to start that. I'll be bikini fit in time!
Below is a photo of my adorable cousins, KikiMama and Joy Joy! Joy Joy is very special because she's overcome being prematurely born. I'm so happy for how great she's doing. Just one more wonderful thing for me to live for.
Hang in there, guys. Keep smiling. Stay positive and love your Lupie!

Faces of Lupus II

2010-02-06T21:19:00.001-05:00

more about "Faces of Lupus II", posted with vodpod

Lupus and Insomnia

2010-02-05T02:03:00.000-05:00

It's almost 2AM, and my adorable husband is fast asleep. He has no idea how blessed he is to fall asleep within ten minutes of getting into bed. I envy that! I have "Sleep Envy"! He's just blessed, I guess. He just ought to be because he's a great guy. He's a hardworking family man, who's up at around 4:30 every morning, without the alarm clock. I used to be that way. I remember the times when I was just prepared for every thing and loved going to work early. I miss those days. We complain when we're at work; we complain when we can't work.
When I first started to go downhill with Lupus, I recall, all of a sudden being dead tired and aching, but unable to fall asleep. Then, once I did fall asleep, most times, I couldn't sleep through the night as usual. Then, there were times when I would sleep 10 hours and still wake up feeling like I was exhausted! I would lose my appetite; the mere smell of food would nauseate me. I would lose weight to the point where my co-workers would just stare. Only one or two people would approach me and ask if I was OK. The rest would just whisper comments or whatever.
After trying several natural remedies to help my insomnia, I finally gave in and started taking a prescription medication for sleep. For a good while, it worked, then my body would build tolerance and I would have to switch off for a while and take something else. Now, tonight I will probably stay awake until it's nearly time for my husband to wake up, and then I will feel my eyes burning, and finally pass out from sheer exhaustion!
The insomnia is also worsened when bad weather is coming. This weekend, we're expecting a blizzard, maybe.
One thing that doesn't work for insomnia is alcohol. For many Lupies, alcohol has a rebound effect. Besides, the sulfites in wine can cause joint swelling and pain, especially from white wine. Red wine doesn't bother me at all, but I don't use it as a way to get to sleep.
So, now after I'm done blogging, I'll soothe my mind by reading a few scriptures. Reading the Bible is something everyone should do. The Bible has the solution for every dilemma that mankind could ever face. Our God made us, and the Bible is the manual that shows us how to best live our lives and get the best from it.
I particularly draw strength from the experience of Job. He lost nearly everything he had, and yet he still kept his faith in God, knowing that God could would bless him. I guess I identify with Job because he was stricken and afflicted, even to his bones, that's how I feel with the bone pain that gnaws at me every single day. Like me, Job knew that even if he died, he could live again, in Paradise on Earth, as Jehovah promised. If Job could do it, then I could at least try!
Thanks for reading. Live well and love your Lupie!

Lupus and the Winter

2010-02-04T00:19:00.003-05:00

The winter weather can be very difficult for Lupies. It's strange when a person can predict the weather. My hands and feet swell and ache, just like my joints. My biggest problem is my constant back pain. It's always there, but it's worse when inclimate weather is on the way. I can feel it up to at least 3 days away! The good thing is, my husband is not demanding, and makes life with him very pleasant and easy-going. Just to see his face gets my endorphins going! Disability can be boring, especially in my case. I'm confined by certain temperatures. It was very difficult in the beginning. I just wasn't used to staying at home and not doing much of anything. Grandmother Gillens helped me to appreciate what I do have and she encouraged me to just rest as much as I can and not to "overdo" it. She knows that on the days that I feel well, I tend to get really excited and feel like I'm on top of the world! I have found that on my bad days. I have to focus on the fact that pretty soon, I will feel good again. The people around me are ok with my doing the very minimal on the days that I don't feel well. The problem is me! I keep feeling that I should always be doing something and that time is passing me by. Then, I remember the blessing in the fact that I am alive to fight another day. I thank Jehovah for the small things. You should too. Live well and Love your Lupie.

What Lupus Feels Like To Me

2010-01-15T21:20:00.005-05:00

Lupus, to me feels like having the flu every single day. Lupus is not necessarily a death sentence, but it does feel as though it is sometimes. The aches and pain can wreak havoc on your life. Simple tasks can seem nearly impossible when you're flaring and in pain, with a fever! Not every one can handle discussing the illness with you. For some, ignorance is a large factor. There's no reason for any one to be ignorant regarding Lupus any more. Chances are, you know someone with the illness. The responsible thing to do is research! Don't assume anything when it comes to a Lupie! What I hear a lot is, "Well, you look sick." I've learned to just smile and walk away. There was a time when that statement would just drive me crazy! It was like a punch in the gut. Sometimes I would say, "Well there are some dead people in the morgue that still look good as well." A person's appearance has nothing to do with whether or not they feel miserable. You have to keep in mind that people with Lupus do not have the flu! What we have is an EVERY DAY thing! Life goes on, and none of us can just sit around looking like they really feel all the time! Despite our illness, that may consume our lives, we have responsibilities, families, children, jobs, spouses, ect. And even our biggest supporters and partners, no matter how empathetic they may be, do not understand exactly what we go through! If you don't have Lupus, you will never understand the life experiences of the persons with it! I have discovered that with having Lupus, you have to be very careful who you discuss your illness with. Some people are narrow-minded. Some treat you as though you're an invalid. I don't always want to be asked how I'm feeling! Truth is, how I feel can vary from one day to another. Every day is a crap shoot, so to speak, that's what makes it difficult for a Lupie to work a full-time job or go to school. Some days, I wake up feeling as though I'm normal again. Then, there are days when I wake up feeling like a truck hit me! The weather plays a large part in how a Lupie feels as well. Changes in the barometric pressure can precipitate arthritis pains and fevers. Lupies usually know when bad weather is coming. Now I know why the old people always talked about the weather and their hurting bunions and such! For me, controlling my weight and pain are of primary concern. I have a difficult time functioning in severe pain. For most of us, pain is the norm, but severe pain is incapacitating and depressing, at times. Once you get the pain under control, you can get along with your day and do what you have to. I mentioned weight control because sometimes we may have to go on steroids and other medications that cause weight gain. Steroids also cause bone depletion. With Lupus, comes bone and joint pain, and with excessive weight, comes more pressure on joints and bones, so it would be wise to try and maintain a healthy weight. Mental health and happiness are a must for anyone with a chronic illness. When it comes to my life and how I handle my affairs, it's important that I eliminate any sources of stress and drama! Life got much easier for me, when I cut certain toxic people and influences out of my life. It wasn't easy at first, but in the end, I benefited. There's no time or energy for "people pleasing" and being abused and mistreated. For all those that don't love you for who you are, and embrace and support what you want to be, leave them alone! That time and energy should be used in more positive ways, like healing! Live well and love your Lupie!