Lupus, Loving Life and Paying it Forward...

 Several months ago, I started taking Benlysta infusions. I can honestly say that my energy level is better, but the pain and fever is still a 24 hour, 7 day a week battle. I guess one out of 3 isn't bad. The other thing I find is helping me is that I exercise at least 3 days per week. I still have major pain in the morning, but I have to say that, sometimes I push past the pain and do some stretching excercises just to get moving.
I also find that prayer to Jehovah and meditation on the Holy Sciptures does a great deal to combat depression and anxiety. I make it a point not to "confide" in anyone about every single issue that I face. I have had experiences where some people felt the need to "pity" me, and that is not what I need or want from anyone. When I'm ill, I want to be alone to deal with it. If I'm sick enough to be hospitalized, even then, I still want to be alone, except for my husband and Aunt. When people come to visit me in the hospital, I may feel the need to prop myself up in bed, and "entertain" them somehow. I don't need to feel that way, when I need to focus on getting better. In addition, I don't want anyone to use my experiences as their fodder. I defend my privacy fiercely, and that will never change.
Along with this new medication, Benlysta, there are major side effects, like migraines and during the infusion, I get a chill down to my bones, and my nose begins to run. Before the infusion, the nurse infuses Benadryl and Decadron, to decrease the sensitivity to the medication. When I first started taking it, after the infusion, later that evening, when I would urinate, I would wipe, and the skin around the meatus would bleed and the tissue would slough. Sometimes I would have to apply Desitin for at least 3 days after the infusion. Benlysta is strong medicine, but I find that it wears off at 3 weeks exactly! I'm going to see the Rheumy next month, so it will be then that I will ask her to change the frequency. From the beginning, this Dr. fought me about even taking this medication! The nerve! This is my body!
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.

Remember to live well and Love Your Lupie!

Lupus and Constipation...

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

Lupus and Infections

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.

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...

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

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

   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!

                                                                                                                 
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....

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....

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...

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

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...

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....

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...

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

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"

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

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

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

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

Lupus and Insomnia

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

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

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!

Lupus and Death

This is a photo of Grandfather Gillens when we were at a family reunion in Myrtle Beach, SC. It was a great time. My husband was with me and we just enjoyed being with each other very much. My Aunt Rose helped to get the whole thing up and running. I was grateful to be a part of the whole affair. The only time I was sad was when all the grandchildren would get up to make comments about the great grandparents, who were alive until the late nineties. If I had known the truth about my family, I could have known them, and perhaps I would have had a great memory of my own to recount. I went home over the holiday to spend time with Mother Rachel, my father and Grandmother Gillens. This was her first holiday without Big Papa. She tried to put that beautiful smile on for us, but I could see the sadness in her eyes, especially when we went to visit the cemetery. I asked my Cousin Frankie to take me there so that I could see where they buried Grandfather. When he passed away in June, it was the same time that my Brother-in-law, Leon passed away. I was so numb and so ill by it all, that I didn't have the strength to go with the family to bury my Pop Pop. Besides, I had a raging fever, and it was about 96 degrees that day. I just couldn't bear it. All through the service, I kept praying that I wouldn't pass out! After the funeral, Delois came back to the house with me, and I slept for about 6 hours straight. Even when I woke up, I wasn't hungry. I was to upset to eat. I had some water and drove back to Columbia with Delois. Well, on this trip, I got a chance to spend some time with my Dad, just talking and making each other laugh. He tries to put his best foot forward as well. The loss of his brother and father is daunting, but life has to go on. I got a chance to meet a friend of his. She seemed to be nice. Even though I wished that we had more time together, I know he needs his social life. I enjoyed him as well, but began to miss Andrew too much. I got on the road Sunday night and drove until I felt tired. I pulled over at a restaurant, got some food, slept and then got back on the road. I didn't know that I could miss anyone that much. I just needed to be here for him. I could feel him getting lonely, even though he wouldn't go into details over the phone. He felt that he didn't want to take me away from my family. I felt guilty for being away for so long. It took me nearly a day and a half to feel rested and like myself again. We're all caught up and comfortable again.Life is not easy, always trying to reconcile and divide my time fairly with family, friends, and Andrew. He's not one to be selfish, or ask for much of anything, but I don't want to neglect him in any way. I would just die if I ever knew I hurt him. He doesn't deserve that. Besides the deaths of Grandfather and Leon, this year has had an overall good impact on my life. Living with Andrew and being in love makes life easier and really worth it. Remember to Live Well and Love Your Lupie!

How A Lupus Flare Affects Your Loved Ones

Just recently I was released from the hospital with a really bad case of Gastritis, that included vomiting of food, bile , and some blood. I was just besides myself with PAIN and nausea. I just wanted to be left alone so that I could expedite the healing process. Meanwhile, I had no idea that my husband, though appearing to be calm, was very nervous and upset by the whole ordeal. He called on his family for support, when I begged him for discretion. When I'm ill, I feel entitled to be alone, as I have been for so many years. I was upset with my husband, but then a friend told me that he probably needed support to deal with this whole mess. I began to calm down and realize that my husband is just an extraordinary man, who has been bound to this person who happens to have an incurable illness. He was just looking for support. I had to come to realize that he is where I used to be. I'm used to being ill and hospitalized. He has to get used to it. I just loved the way he waited on me hand and foot, and came to be with me every night while I was in the hospital. I have no need to complain. When he hurts, I hurt, and vice versa. That's just how it is when someone loves you. Live Well and Love Your Lupie

Lupus and Exercise

Say what you will about exercise...it's the only way to tone your body and trim the fat. Thirty four was the magic number for me where my weight was concerned. Many people who know me would never think that it's an issue for me. I love my body, don't get me wrong. It's just that I have to be careful about what I eat sometimes. It's still not as bad as some women I know. I still eat a pint of ice cream at least twice a week! Will I ever stop this horrible thing? NO! I'll just increase my secret routine. You wouldn't believe how little time and effort it takes to see results! Everyone has that "thing" that works for them and them alone! The lovely thing is that I have never had a "belly bulge". The women from both sides of my family suffer from "Big Booty Judy" Syndrome! The bulk of my body is butt and legs! When I was a kid, I hated my body because I felt unbalanced. I've come to terms with it, however, I'm loving the Wendy Williams look. Many women in my family look like her as well, especially from the maternal side...big EVERYTHING! Nowadays, I've taken to the toning exercises that I've always done before vacations and photo shoots. Of course, my husband would love it if I gained more weight. He said that his mother was a large sized woman, and she was "absolutely beautiful." Indeed, she was, however, when I start getting close to 14o pounds, my knees start hurting when I descend the stairs. In addition, if I gain a lot of weight, I'll have no use for my wardrobe, including custom fitted furs, ect. I'd be screwed! It costs to fund a new wardrobe, not to mention the pressure on the heart and joints. The bottom line is, I love what I have, and if I had to gain it due to medications, like steroids that many Lupies have to take, then so be it. Women spend so much time hating themselves for what they perceive as imperfect. Guess what, we all have imperfections, even some of the most "beautiful people" in the world. Love begins from within. Life is great now. Why should something like a few pounds make me unhappy. I have a wonderful family, most of all, a great husband. Life couldn't be better, big booty and all! My life is proof that anyone can reinvent themselves if they want to. Live well and love your Lupie!

Lupus and Pain

I've posted a blog before about Lupus Pain, but tonight I think I need to add a little something. Sometimes people with Lupus suffer no pain at all. That's amazing to me! Well, I have PAIN all the time! I have worse pain in the morning, when I wake up. I have worse pain when there's bad weather on the way, or I'm getting my cycle. I have worse pain when certain "health care professionals" ignore me when I'm speaking to them about my symptoms. I recently had an experience with a Dr. David Blady, a Neurologist. I explained to him that I was having problems with dizziness and headaches, and that I had a minor "black out" recently. There were other symptoms, like problems concentrating, ect. He wrote notes down and performed an exam. Then, he said the most idiotic thing to me, "Well, for all the symptoms you're mentioning, you should have been dead by now, but you look like the picture of health!" I'm embarrassed to say that I envisioned myself hitting him over the head with a very blunt object! If he only knew! I had to bite my tongue, take a deep breath and whisper a few words of prayer! Self control is a struggle sometimes. So, I have an appointment with a new doctor tomorrow. I'll keep you posted on how she does. I've heard that she a good Neurologist. She came highly recommended by Dr. Goldberg, my shrink. In the above photo, is my friend Shannon and myself. She's one of those good friends that calls just in time and says the right things when she does. Our husbands are good friends as well. Good friends come in handy when you're in pain. I may not need to say much, but just need to hear a concerned voice of a friend. Usually there's nothing new to tell, but they call to listen anyway. That's comforting. Sometimes people say that they want to be there to help, but if you call them, they're not available, or sometimes they just don't call at all. Maybe they see themselves in you. Maybe their afraid that you're contagious or something.

Lupus...Lupie? What's in a Name?

I just read this blog where this woman is complaining about being referred to as a "Lupie", or a "Lupus Survivor", or whatever. She answered a question that I had on my mind from the time I began to read her blog...."Was she medicated?" Yes, she was! Who gives a rats behind whether or not people who have been diagnosed with Lupus are called "Lupies" or "Lupus Survivors"! The point is, whether you like it or not, we're here and we have something in common. It's true, that your opinion is exactly that, but guess what, when someone hears the term, Lupie, most of them know immediately that you're referring to someone with Lupus and not someone who is drunken or possibly "medicated". My take on the whole matter is that I have Lupus, it doesn't have me. I'll fight until the bitter end, although there have been times, when I felt otherwise. I am a Lupie, and I don't feel demeaned at all when fellow Lupies refer to me as such. As Lupies, we have bigger fish to fry, don't you think! Above is a photo of my handsome husband and myself. We just recently attended our Religious Convention at Jersey City's Stanley Theater. I wasn't able to attend all three days, but I took in as much as I could. Spiritual food is a valuable asset to assist in dealing with not only daily life, but serious illness as well. How refreshing it is to read the Bible, and find refreshment in these perilous last days we live in. Have a great day. Live Well and Love your LUPIE!

Lupus and Life!

I had a very interesting conversation with a younger cousin of mine today. Her name is Mommy. I don't know why we all call her "Mommy". She's the baby girl of the family. It would seem that we would call her older sister, Angel that name. Southern families are that way, though. i just love my girl, Mommy! I knew from the time she was very young that she was going to be an exceptional person! She's finally enrolled herself into school and is working. Unlike so many of our young cousins her age, she's trying to do the right thing! Eutawville, SC is a hard place to come from. It's takes special moxy to rise to the occasion on that deal! Our family has a disturbingly dysfunctional history that I resent to my very core! Speaking from what I know, my Grandmother, Katie gave a few of her children away to family members. She had 16 children that survived. She didn't have the financial means to care for them, so she "shared" them with various family members. I can tell you from my own personal experience, that decision nearly cost me my sanity! The family member that she gave my biological mother to was an insecure, hateful maniac, who only took care of "others" for the sake of the "glory" factor! The dysfunction that Annie Bell suffered, she passed on to not only her children, but also to that whore I had for a mother, Fannie Ruth) Gethers (Rice)! Every horrible and negative thing Annie Bell did to Fannie, Fannie turned around and gave me a double dose of it! If it had not been for me be soo strong willed and learning to think for myself very early on, I would be just as screwed up in the head as my younger sister, WynPsalm! And guess who gave away her older son, while continuing to raise the younger one....WynPsam! History only repeats itself if the one looking in the mirror doesn't have the will to CHANGE! Just because someone treated you poorly, it doesn't mean that you should do the same. Most of life is what you make it, and if you put your mind to it, you can change the situation you're in now, thereby changing your future! Not all women are supposed to have children. My biological mother was one of them. Being an attention phene and as selfish as she is, giving birth to a girl was probably the worst thing that could have ever happend to her! After all, I was reminded more than a few times that I should have been aborted or what have you. You see, some "mothers" are soo insecure and mindless, that they literally become jealous of their own daughters! Go figure! If I had a daughter, I would want to lift her up and carry her on my shoulders. I would want her to be more beautiful and far more intelligent than myself. Those are sacrifices that "real" mothers are willing to make for their daughters. For a period of time in my life, I actually said that I would not have any children, for fear that I could actually turn out to be like she was. Thank Jehovah, my therapist helped me to see that even though, unfortunately I came from her, I am not "her". I am my own woman and I have already proven that I can make wise decisions and am capable of handling conflict, while realizing that the world does not revolve around myself. Then, I thought, "Yeah, I was wise enough to keep my ankles off some guys dashboard! I was wise enough to go to college and realize my dream to become what I wanted to be! I knew that I was beautiful, but decided to use my brain instead to get ahead in my life!" And finally, all you lovely people out there, I learned to really love the TRUTH, whether it was good, bad, or ugly! With that being said, when you live the truth and love the truth, you don't mind being transparent and vulnerable to the ones you love; as a matter of fact, it's imperative that you are truthful and transparent for true love to come into your life and stay in your life. If you live a lie, you're not only going to hurt yourself, but you're going to hurt other people around you. If by some chance, your past has hurt someone, then the only loving and mature thing to do is apologize from the heart. Don't even bother opening your mouth, if once again, you are planning to LIE! Live Well! Live the Truth! Love your Lupie!

The "Lupus Look" and Me

Not every single day is a struggle these days. Having the support of my family and the love of Andrew makes all the difference in the world. I actually have the capacity to think bigger and better now. I'm resting a little better as well, that may have something to do with the fact that I've discovered that spooning is very therapeutic. It may not be easy to trust enough to love if you've lived the life that I have, but if you can just get past the issues and the obstacles, I pray that you end up with the kind of happiness that I am experiencing right now. The life I've survived is a testament to the who and what I am made of. I tell my story because I want the reader to discern. I want the reader to be better than me, faster than me, and heal just like me. My stories, though painful at times, are true. At times I may not mention the actual names of the individuals in the story, but I will always tell the truth, whether it's good, bad, or UGLY! I recall when I was about 8 or 9 years old, complaining to my Grandmother Katie that I was being teased because of my "looks". When I was younger, I was sort of a reddish/brown headed kid. My features were changing and I knew it, but I had no explanation for it. My Grandmother looked at me and told me that as I got older, I would change and begin to look better as I got older. She said, when your friends start getting older and losing their looks, you're going to notice that you're looking better and better. That's going to be your curse and your blessing." She then laughed. I have to say that I never believed her until a few years ago! The crazy thing is, now some people question whether or not I have an incurable illness! When I first started on my journey with Lupus, not knowing at first that Lupus was the diagnosis, I would go to different doctors and they would look at me like I was crazy! I couldn't believe that so-called Medical Professionals were "judging a book by it's cover" and not believing me when I would tell them that I was in severe pain, running fevers, losing weight, and having difficulty sleeping. One MD even told me that I should see a Psychiatrist, after seeing me only once in the hospital, before seeing my labs, which, by the way were out of whack! You don't want to know what my response was to him! Here I am losing a pound a day and suffering in every which way one could imagine! He actually wrote in my chart that he suspected that I had "Munchhausen's"! I was furious. Here he is looking at an African-American female in a state of poor health, wearing a head scarf, and complaining of severe pain. He probably looked at me and suspected that I was "drug seeking." I really despise people who take it upon themselves to judge me before they communicate with me! How stupid is that! Pain is subjective and no one knows the pain you feel and no one has the right to say that you don't have pain, when you're telling them that you do! I'm here to tell you that it is a CRIME! The next time you find yourself in the hospital, and you're requesting pain management and relief, and you're ignored, either by a nurse or a a doctor, report the matter to the Board of Nursing (after you have the name of the nurse, of course. The State Medical Examiner's Office should be reported to in the case of such a physician that would do such a thing. People with Autoimmune Diseases like Systemic Lupus have been ignored and brushed off long enough. It's time to start holding accountable the people who are supposed to be helping us, instead of criticizing and judging us. In my case, I once had a doctor, who would come to my room, stand at the edge of my bed and say to me, "How's my girl today?" I would repeat the same complaints and he would do nothing but just nod his head and shadow the charting of the nurses that had seen me. Then, he had the nerve to order 75mg of Demerol every 8 hours or so to "help" with the pain! Once I discharged myself from that hospital, I reported him to my insurance company for fraud. After receiving several of his bills, I wrote to him and explained why I reported him, and then I asked him how it felt to be IGNORED! Never heard from him again because he knew that my next step was to report him to the state! Of course, I have a wonderful doctor now. Dr. Kenneth Adessa is awesome! He returns all my calls, emails, ect. He keeps up with the latest treatments and research data, and he is compassionate. He will not let his patients SUFFER in pain and agony like I did for so long before him. Let me tell you, uncontrolled PAIN leads to trauma. Trauma is stressful, and stress to Lupus is like cryptonite to Superman! Nevertheless, I am not going to scale back mt efforts to continue to "look good." I have to tell you that on the days I don't feel well, I don't pull it off very well. And you have to have your "thing"...that thing that gives you a boost. For me, that thing is a gorgeous pair of stilettos! So, do your "thing" and enjoy! Love your Lupie and Love yourself to. Have a good one.

Lupus and Jealousy!

Have you ever been in a situation where you have a certain "friend" who likes to act as ethey like you, but you know that they hate your guts deep down inside! Jehovah gave us common sense and perception to help us identify our enemies, the ones who are wolves in sheep's clothing, however, ever now and again, we tend to get broadsided! One witch manages to slip through your B____ radar! I was consumed today with all the experiences I've had over the years with women who were like that. I'm thrilled to report that all those sorry, pathetic individuals have been extricated from my life! As for this Lupie, my every day is important and every friend is truly a gift, and I make sure that I treat them as such. Long gone are the days where I give "the benefit of the doubt" when in reality I was making excuses for "the friend's" less than friendly behavior. Nowadays, I call it how I see it and I don't waste time on foolish people and their drama! Recently, I met a female associate at religious function. Without even opening her mouth to say hello to me, she comes over to me and says, "What kind of make-up do you have on?" I was shocked, but I answered simply. I had to keep before me that I was in the presence of others, so I exercised restraint when she then had mitigated gaul to come over into my personal space, and touched the root of one of my locks, just so that she could see whether or not my locks are real! For the record, my locks are REAL, for all those insecure, and inadequate women out there! I have never worn a weave or a wig and more than likely never will! I love my self to much to get involved with someone so shallow and intrusive. This paticular woman is of course, looking forward to meeting new friends, because she just blew it big with a recent friend who no longer wants anything to do with her! Been there, done that! I'll keep you posted! Still loving my man the best I can and I'm sitll grinning and smiling fom ear to ear! One thing about it, as that we refuse to divulge any details about our marriage. I love my husband and I know he loves me. His love is healing, even his touch andis therapeutic. I wish for all of you the love that I have from my husband. He takes amazing care of me and his responsibilities as family head. Good night all. Live well and love your Lupie like it's the last day every day!

Lupus and Death

Hello People. This past week was one of the most difficult times in our lives. My Grandfather Gillens passed away last Monday and my brother-in-law passed away on last Thursday. They were both funeralized on this past Saturday, one in NJ and the other in SC. I was devastated to have to leave my husband here and travel to SC with my Aunt. I kept calling to check on him. He was so calm about everything. On the day of the funerals, I was so stressed that I flared and was running a high fever! I could barely think. After the funeral, I had to go to my Grandmother's house and get into her bed. It was too hot to go to the burial. SC is scorching this time of year! On the way back to NJ, we stopped in Winston to see the old lady. She was happy to see us and we her. We stayed until she fell asleep, although she told us that she wanted to come home with us. That always aches my heart to hear her say that. If I had the money, I would take care of her right here with us. I love her just that much. I was too glad to get back home yesterday. I was again feverish today, so I just rested. You have to give yourself permission to do that and not feel guilty about it. Lupus is a serious disease and if you don't give into it, it will push until it pushes you DOWN! I tried fighting it, but that wasn't smart. Each time, I just ended up in the hospital. It's your choice, you can fight it and suffer, or you can just rest and get the best out of the next day. "Live to fight another day." Live well and remember to love your Lupie!

Lupus and Herbs

I am sick and tired of these people contacting me regarding "herbal cure" for Lupus! If there was a cure, I would have jumped on it a long time ago. I have spent years taking all sorts of herbs that worked for a short period of time and then fizzled out like flat soda! I changed my diet, I exercise, I extracated toxic people and influences from my life, and I have a strong faith that I not only practice, but try to live by every single day! If there's any one out there with real cure for Systemic Lupus, then contact me, please. All that bull about Lupus only being incurable if you "believe" it is is a bunch of garbage! I believe the pain and fevers I have every single day! I believe the fatigue and the insomnia. I believe the hair loss, the memory loss, and confusion I sometimes experience! And yes, I was involved in several car accidents! I was actually hit by a car once! I also have relatives on both sides of my family with Lupus and other AutoImmune diseases. Are we all just seeing things that aren't there! If you don't have anything positive to say, then leave me the heck alone! I'll make do the way I have been, without your unfounded "advice" whoever you are!

Lupus and Looking Good!

This was me this past weekend at my cousin, Rahmad's wedding. He had a gorgeous wedding in Chicago. It was good seeing everyone. However, the weather was uncooperative. The cloudy weather and rain wreaked havoc on my body. The day after the wedding, I was confined to the bed with a fever. This put Rahmad's mom in a state and she told me yesterday that she was tempted to call an ambulance and have me carted off to the hospital. I tried the best I could to explain to her that I don't go to the hospital every time I flare. She kept telling me that I was not a doctor and that she was concerned over the fact that I was in bed and "didn't look good." You see, this is the bad side of having Lupus and not being in your own element. When I'm ill, I prefer to be alone. If I need something, I know when to call. I know when it's time for me to go to the hospital, and one day with a fever is not the time. Lupus does what it wants when it wants, and that's what most people don't understand! Here I am in this photo just one day before I was hit with what felt like a Mack Truck! Just 24 hours after looking like the picture of health, I was riddled with fever and pain, and all I could do was just lie there and pray for it all to pass. Delois was there and she kept checking on me from time to time. She made sure I had water and fruit; that was all I could tolerate. Nothing I said convinced Pat that I was ok, even with a fever and pain. She was bent on me going to the hospital and essentially said that as the "homeowner" in the "situation" that she was upset that I was sick in her home. She even said that it would never happen again. I don't exactly know what she meant by that, but I think if we have to go back out there, it would be best if we stayed at a hotel, because the last thing I ever wanted was to upset anyone with my longstanding history of Lupus and all.