#TellUsAnything: I’m Fighting Lupus

I’m a 38 year old single mom with a 17 year old son. I was diagnosed with lupus 15 years ago and have had it come and go in and out of remission. 

About six years ago it came out with a vengeance. We have tried every known medication, treatment, chemo all to no avail. Now my only hope is that a stem cell transplant will work, or that God will come and heal me. I don’t feel that my work here is done and I have been unwilling to give up the fight. But it’s been hard.

I went from doing all kinds of volunteer work with kids every day and working two jobs for me and my son, to being pretty much sentenced to a chair. I have been unable to do much, especially in the past year. The fatigue and pain gets unbearable. I cry over stupid things and wish that this was one big nightmare. But it’s not, it’s real and it doesn’t want to let go.

It’s hard on my family, especially my mom, to see me this way and I fight for all of them. But, what I do now isn’t living, especially when I used to be so active.

I pray all the time and I don’t understand why my prayers haven’t been answered. At first I said, I’ll go through this if it means one person could be helped. I still mean this, but with each passing day it gets harder to say that.

No one in my family has Lupus and I thank God for that every day. I would gladly take the pain for any of them. I spent most of 07 and 08 in the hospital. I was Lifeflighted eight times that year and they nearly lost me twice.

There are no support groups, not that I could get out anyway’s, in my area. I happen to stumbled up on this web site. If I can say one thing is that you can’t give up. You have to find that one thing in life that means everything to you and fight for it. Someday, someway, they will find the right answers to Lupus, and I hope I’m around to see and receive them.

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#TellUsAnything: Living with Fibromyalgia

“Mommy, open this, please?” my 3 year old son asked, as he handed me a cereal bar early onem orning.  I tried to tear off the top of the wrapper, but

my fingers would not move or grasp the wrapper!  Terrified, I tried opening it again, but to no avail.  I had lost all strength in both of my hands!  As calmly as I could, I asked my 7 year old son to open the cereal bar for his brother.  But inside, I was panicking because the weakness in my hands persisted for about an hour.  What was happening to me?  Little did I know that the morning of February 10th, 2008 marked the beginning of a myriad of severely painful symptoms.  My life was about to drastically change.

Over the course of the next few weeks, I started to experience alarming new symptoms.  In addition to the weakness in my hands, I noticed that the joints in my hands were very swollen and stiff.  I even took pictures of my hands from all angles to make sure that their odd shape was not just my imagination.

I would often feel sharp zinging pains in my extremities, especially in my hands, wrists, knees, and ankles.  My muscles and joints ached like I had the flu.  There were times when I would be convinced I had a temperature of at least 101, just to find out it was completely normal every time I checked.

My level of fatigue went from “full time single working mother” to “full time single working mother who also ran 100 miles a day.” I was physically exhausted from dealing with so much pain every day.  To make matters worse, I started noticing that when I woke up each morning, I would not feel refreshed, even after a full straight 6-8 hours of sleep. Instead, it felt like I only slept for one hour each night.  So not only was I physically exhausted, I was emotionally drained as well.  The overall level of exhaustion was indescribable, the worst I have ever experienced in my life!  But I was hoping that whatever was plaguing me would just stop on its own.

One afternoon in April 2008, after I got off work and picked up my kids, I couldn’t get home fast enough.  My body was overwhelmed with pain like I never felt before.  As soon as we walked through the door, I immediately headed for the couch, where I spent the next four days.  I had to call my mom to help me take care of the kids.

In addition to my existing symptoms, I also suffered from oppressive chest pain, muscles/joints that felt bruised, extreme coldness in my arms and face, and TMJ-like jaw pain. I also had the sensation that my aching spine and pelvis were going to slide out of my body.

I cried often, because I had no idea how to cope with these bizarre symptoms. I tried heating packs, ice packs, Tylenol/Advil, but nothing even remotely helped me.  My temperature was still normal at 98.6.  My mom, who is a nurse, thought maybe I had a virus, but most of the symptoms did not even resemble any virus I had ever had in the past, plus I was not running a fever.  Even after the four worst days of feeling severely “sick”, most of my symptoms never fully disappeared.

At this point, I was at my wits’ end, so I finally decided to get some help.

So, even though I was terrified of the possible outcomes, I made an appointment to see my primary care physician.  After reviewing my list of symptoms and seeing the pictures of my hands, he thought it was very likely that I had rheumatoid arthritis.  He immediately referred me to a hematologist, who wanted to test me for not only rheumatoid arthritis, but also lupus, mononucleosis, and multiple sclerosis.  He ordered some x-rays of my hands and a lot of blood work.  He also prescribed a week’s worth of steroids to see if that would help.

My daily life started becoming a real chore for me.  Everything and anything I usually did without a problem was now unbearable or overwhelming.  The mornings and evenings were the worst times of day for my pain, fatigue, and weakness.  I tried to stay strong, especially for my children, but there were days where I felt like giving up on everything. I tried talking to a few friends and family members about how I was feeling, but they would just say that I was complaining too much and/or accuse me of being a hypochondriac.  I had never felt so alone in my life.

The results of the blood tests and x-rays came back the following week and were completely normal.  Also, the steroids ended up not helping me at all.  Based on these findings, the rheumatologist suggested that I may have fibromyalgia.  He prescribed an NSAID called Mobic to help with my muscle/joint pain and an anticonvulsant/anti-neuropathy medication called gabapentin to help with my nerve pain.  The doctor said that diagnosing fibromyalgia was very tricky because there are no actual diagnostic tools. Instead, the diagnosis is made after everything else has been ruled out. He also wanted to wait and see how the next few months went with the new medications before confirming the suspected diagnosis.

During the following months, both of the medications had made a difference to where my daily activities became more tolerable.  I still felt very fatigued, but my quality of sleep seemed to be more restorative (due to the gabapentin).  My muscle and joint pain were definitely persistent but they were on more manageable levels (due to the Mobic).

When I went back to the doctor in August 2008, he reviewed all of my test results and evaluated me again, then officially diagnosed me with fibromyalgia, a syndrome characterized by chronic pain, stiffness, and tenderness of muscles, tendons, and joints (definition by MedicineNet.com).
The treatment for fibromyalgia includes pain medication and exercise.  The doctor advised me to continue with the medications I was currently taking and to try doing light exercise when possible.  He also warned me that my medication combination was not always going to be perfect.  He said it may take a few tries with various medications before reaching optimal pain management, and what works for me now may not work for me in a few years.

I was completely devastated, knowing that I was going to live with unrelenting complicated pain and severe fatigue for the rest of my life. Sometimes, in addition to medication and exercise, doctors recommend a gluten free diet to help alleviate fibromyalgia symptoms. Coincidentally, I had already been on a gluten free diet for 4 years already, due to having an auto-immune digestive disorder called Celiac Disease. Unfortunately, being on this diet did not stop me from having fibromyalgia nor had it eased its symptoms.  My doctor said that I’m one of the unlucky fibromyalgia patients who were not positively affected by a gluten free diet.  Sometimes I like to think that being gluten free has stopped my fibromyalgia symptoms from becoming uncontrollable.

A diagnosis of fibromyalgia carries a negative stigma in society because the symptoms are very vague and are not as clear-cut as other diseases conditions.  I have actually heard people say that there is no such thing as fibromyalgia, or that the symptoms are fake and they are all in the person’s head.  It is also widely believed that people who have fibromyalgia just want attention and/or medication.  There are many doctors who do not recognize fibromyalgia as an actual medical condition. Therefore, people who do have fibromyalgia usually have to see numerous doctors before receiving a diagnosis.  Luckily for me, reaching a diagnosis for my symptoms only took six months and involved seeing only two doctors.

Some people suffer for years before finding an answer. Since my diagnosis, additional symptoms have added themselves onto the original list, such as hypersensitivity to stimuli.  For example, if there is too much light or sound, I start feeling very overwhelmed and need to remove myself from the situation.  There are times where I cannot be touched, when even my clothes feel like too much overload on my skin and receiving a hug actually HURTS.  I also started becoming sensitive to the weather patterns, especially low pressure systems.  I jokingly call myself the “human barometer” because I seem to predict rain better than the weatherman!

During periods of damp or cold weather, my muscles and joints heavily protest, and in turn, the pain increases substantially.  I found that I have a low tolerance for any kind of exercise; it makes me feel worse rather than making me feel energetic and refreshed.  I have also developed difficulty with my short term memory and concentration (i.e.-“fibro-fog”), which has affected all aspects of my life, especially work.

Today, it remains difficult for me to deal with the pain and fatigue that I experience every day with fibromyalgia.  My doctor has changed my pain reliever from Mobic to Tramadol, which is a bit stronger, so my pain is at a tolerable level most of the time.  But I definitely have my share of bad days.

On a positive note, I have learned a few things from my experience with fibromyalgia.  I’ve learned not to push myself to do more than I can handle, but I’m still learning that it’s okay to ask for help.  I have also learned to prioritize what is actually important and to just take things one day at a time.  Having fibromyalgia has made me realize it is so important not to take anything for granted.

After my diagnosis, my rheumatologist had pointed out to me that fibromyalgia is not a deadly or destructive disease, which is very fortunate.  However, living with chronic pain and fatigue is still a difficult challenge, no matter what the cause or prognosis.  Yes, fibromyalgia is REAL.

Thank you for letting me share my story.

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#TellUsAnything: Organ Transplants and Polycystic Kidney Disease

Hello B.M,  We share the same story.  I too have a daughter with PKD (Polycystic Kidney Disease)and I am 45.  We also worry about each other.

The toughest battle we face is dealing with outsiders that have no idea what we deal with.  We try very hard to hide the sickness and take care of it, so no one has to handle us in the workplace.  If we do share a story with a co-worker, because we were out sick or hospitalized, no one really believes us.

The thing about PKD is that the sickness comes on hard and fast.  People can’t see the inside of you, so they think you are full of lies or something is wrong with your head.  This is the most painful thing about having PKD because you never know who you can trust to talk to about it, when you are really in need and fearful.

I have learned that even other patients with PKD, that do not have the same infections, can be just as ignorant as the healthy ones I come across.

I am due to have a transplant in the next year or two, and I think it will surprise at lot of people who think very little of me.  If they could live in my shoes for one episode, I think they might be very, very ashamed of themselves!  Terri B

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#TellUsAnything: Caregiver Blues and Adrenal Tumor Discovery


Hello.  My name is Pam and I am 47 years old.  I am a mother and a grandmother, and my job is that of a caregiver.

I am a diabetic type 2 and I have a thyroid condition. A few months ago I was having a lot of pain on my right side (too much stress on my body from my job) and I tried to live with it for a few weeks but one day it got really bad too where I couldn’t walk.  I went into the ER and they took a lot of tests and a MRI, that is when they found something else on the other side.

It is funny when you go into the ER with one thing and come out with two things wrong with you, just by taking a lot more tests.

I have a tumor on my adrenal gland. The tumor I have is called Pheochromocytoma (they don’t know if it is cancer yet since there is NO fatty tissue around it so they have to wait till it is taken out to determine if it is or not). My plasma metanephrines are very high similar to a urine test which makes adrenalin-producing tumor.  (sorry about the big medical words).

When I sit down, my blood pressure goes down, but when I stand up it goes way up, much more than it should. I have to have the tumor and my adrenal gland removed. I will be having the surgery next month (March).

There are days when I get an episode and it really throws me for a loop.  And being a diabetic, I do get those episodes and it really takes over. I am finding out that since I am a diabetic and that the tumor I have does produce a steroid into my system, that after I have this surgery my blood sugar counts will be lower than what it is now.

I take oral med’s and insulin twice daily and I am really hoping that this will help it in someway. I started taking sodium pills 5 times a day and then blood pressure med’s once a day. Before the surgery I will have to take a beta blocker.

Starting Monday, I have to get two blood pressure readings twice a week and heart rate tests to see how things are going.  There are a lot of symptoms, most of which I already have, but if they get worse I need to see my doctor.

I took the sodium pills for the first time this morning, and I should have dranked it with water like they said instead of coffee, because instantly I was sick.  But thank the Lord it lasted for five minutes.

I will be having a laparoscopic done but just in case I had to sign a form in case they have to open me up. Wow, that is a lot and you know I am kind of scared. I will be out of work for a month. The doctor’s said since it is going to be laparoscopic, I shouldn’t feel too much pain.  I don’t know what I am going to do in that time frame.  I hate being not able to do anything day in and day out.

I never had anything “serious” like this before.  Sure, I had a broken ankle and arm. I was semi attached to my twin, but my twin never formed and of course didn’t survive.  But my left side is smaller than the other about 4 in.

I had to have surgery on my right knee to turn the bone to slow the growth for the left side to catch up to the right side. And now I have this, and even though I am scared, I can’t wait untill it’s all done because of all the stress that is going along with it.

Thank you for letting me share my story.

– PG

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#TellUsAnything: Lupus can kill

I just read Brandi’s story and I’m so glad I did. I have lupus. I am an adult female, and I am on prednisone much of the time. I go back and forth with additional “chemo” drugs for lupus, like imuran etc. I have a brother with MRSA who lives in a nursing home.

He weighs about 450 lbs and frequently is hospitalized for cellulitis or pneumonia. He was recently at death’s door with sepsis. It was so bad that he was in a coma.

He is quite demanding, I have been dogged by him so often to come visit him or be with him when he is hospitalized. Others in my family (healthy) think I am being too cautious when I say I don’t want to anymore. The reasons are plenty.

First, he is rarely MRSA-free. He is on Vancomycin through a pic line about every other month. Even so, his nursing home never has an iso cart by his door, so no one can wear a gown, mask, or gloves When visiting. I have been told by my doctor that I HAVE to protect myself. The staff at the home is very rude to me when I have asked for such items.”What for?” they ask, snidely.

In the hospital, it is hit and miss. One time, the nursing staff has a sign on his door, an iso cart, and is very explicit that NO ONE enter without protection. Other times, the staff can be very cavalier about it, saying, “Oh, we don’t use all of that, most of us are colonized anyway.” Well, what about the other patients they are going to go see who are not well, and AREN’T colonized and don’t want to be!

No wonder MRSA is called the Super Bug, the Killer Bug. I have seen such an enormous amount of ambivalence, ignorance and downright dangerous attitudes and treatments, both in hospitals and nursing homes. Needless to say, my brother thinks I am a terrible sister, doesn’t understand, and tells me the staff thinks his family is wrong about our “information.” This, coming from a man who has had positive MRSA nose cultures, oozing sores on his body that never heal, and cellulitis because of the MRSA.

I am so sad for Brandi’s parents, I read the story in the Lupus Can Kill category. But I am going to print it out and send it to my brother and the staff at his nursing home. Maybe with better education, others won’t have to suffer.

#TellUsAnything: Young and crazy for my eating disorder

I was about 13 when I became bulimic. Being so young, I didn’t really know what it was, I just did it. I could eat anything I wanted, so long as I didn’t keep it in my body, it didn’t matter.

Sometime, in between that period, I developed hyperthyroidism at 15, that’s where your thyroid (which controls your metabolism among other things) goes crazy fast. A goiter developed on my neck. It wasn’t totally off-putting, but I figured as long as I was skinny, I could live with a weird neck. My doctor explained what was going on in my body, but the only thing I really paid any attention to, was all the weight I had lost or the weight I will lose through this problem. I thought to myself, quietly, that I was reaching my life long goal of being thin. Along with vomiting everything I ate, my thyroid was causing me to drop pounds left and right!

By my freshman year in high school, I was an absolute mess. I was withdrawn from my friends. In my mind, they didn’t understand the battle I was going through. One day I was studying with a group from a class in the library and they were sitting on the floor and I was lying on my back reading when one of them made the comment that I was so skinny they could see the floor underneath my back. I merely shrugged it off.

A few months later my best friend and I were taking pictures and she told me I had chicken arms! I told myself that she was just jealous of the fact that I was skinnier than she was.

My Junior year hit and I had a melt down. Rumors were going around school that I was anorexic. Suddenly, my achievement turned into a nightmare. I didn’t want to go to school, so I would make up some excuse to go home. My grades suffered, my friendships suffered, and my health suffered the most.

I finally broke down to my best friend and her mother (I was too embarrassed to tell my parents. I was worried what they would think of me) and I got help. To this day it is a constant struggle. I still get urges to vomit after I eat. I don’t think that part of my disease will ever be cured–but I do resist the urge–that’s something I can pat myself on the back for.

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#TellUsAnything: 47 years old and battling Anorexia

What Is This Disease?

I was 13 when I was diagnosed as anorexic. My mum was a single parent, so I got free school meals. The cue was longer for those paying for their meals, so I used to sell my tickets and buy cigarettes.

My mum worked very hard, so I never went home to a cooked meal, in fact, I rarely saw my mum. I got weaker and weaker often laying in bed until 4 p.m.

One day a friend rang me and insisted I come over. I walked out of my home and nearly fell over. My balance was totally off key, but I got to her house via pigeon steps. When I got there, my friend’s mother forced me to eat a plate of food. I ate it to appease her but I promptly threw it up. She ranged my mum and had a go at her, asking if she’d looked at her daughter lately. Fair play to mum.

My mum took me to the doctor the next day. I was told ‘if you don’t start eating you’ll end up on a drip in the hospital within a month.’ I had to eat (or try which was hard) a biscuit every hour, it was horrible but I got through it.

I still struggle with anorexia at 47 years old. It has stayed with me all my life and I HATE IT. What is this disease? Why does it happen? I don’t want to be a model at my age. It is an illness and I don’t understand it at all.

Thank you,

#TellUsAnything Eating Disorder Voices in My Head

Hello, my name is Cindy, and I am 25 years old. My eating disorder started at the age of 13, and has remained a voice in my mind since, some days I can defeat it, others it just takes over my whole body where I find myself tangled in a web of lies, hatred and  fear.

I am 5´2 weighing at 112 lbs, yet I am never content, but what bothers me the most is to gain weight, that is my biggest fear. When I started dieting at the age of 13, I wasn’t even fat. I guess I started becoming interested in boys and popularity. You start competing with others just to be the best. The problem is you never are your best.

You punish yourself, and I guess this was my way of coping with life. I know this sounds strange but it was like a drug for me. I would go for days without anything in my stomach but water. The feeling of having nothing in my stomach, feeling dizzy and tired all the time was like a high for me, and I felt proud because of that willpower and that sense of control and accomplishment. It was a way for me to deal.

I had ups and downs. My downs was when I would give in to food and gain. I would fall into a deep depression and beat myself up. I hated where this road was taking me.

I started experimenting with bulimia, since crash dieting was no good for me anymore. Instead of going down, I would fluctuate, and gaining and losing weight the way I did, marked my body for life, with these terrible stretch marks. I would binge until there was no tomorrow.

It was after I had my first child when I invited this new drug into my life called bulimia. I became very depressed. I was 18, with a baby and alone. At some time in my life, I met this wonderful person who is now my husband. I finally became comfortable with myself. I felt secure. I felt like food would no longer be an issue in my life, it would no longer be a pointless thought that invades me, my mind, and my soul.¨I was cured.”

I never admitted to having a problem until one day my husband admitted to have heard me various times purging after my meals (this was then while we were dating). I was 19 years old at the time and I weighed 101 lbs, still 5´2. He became the person I needed by my side, my friend, my partner, my love. He reassured me that I was beautiful no matter what and without applying any pressure. It was my husband who helped me fight this enemy. We were married when I turned 20, and we now have a 5 year old boy together.

I wish this story would have a happy ending. I am still hopeful one day that it will, but to all those out there fighting off this enemy, this constant battle with food, I feel for you. It is not easy and there is no easy way out.

Starting May of this year 2008, after 5 years of being freed from this disease I started once again, letting into this monster. I was weighing 131 lbs, and I guess I felt fine, until one day I became conscious about my weight. I stepped on a scale and that was it for me. This was 4 months ago.

I started once again crash dieting, throwing up my food if I eat the wrong things, or if I eat what is considered for me too much. I do not overeat, I do not binge, those days are over. However planning out my meals has become a daily routine in my head. As I eat I am thinking about what I will eat in my next meal. I look at myself in the mirror 20 times a day or more. I can never be good enough.

My daily meal routine a day goes like this: breakfast: 1 cup of cereal (special k with 3/4 cup skim milk) / one fruit (8:15 a.m.) lunch: 1 non fat yogurt drink / 1 healthy granola / 1 fruit (2:00 p.m.) snack sometimes: almonds, cashews (10 or 15) 1 coffee w/ skim milk and diet sugar dinner: 1 fruit plate with yogurt and granola crumbs. ( 8:00 p.m. ) and no more. Other days I might do exactly this but skipping the last part which is dinner. I always try to have my healthy breakfast.

I need to keep this under control because my husband loves me and I want to love myself. I believe that taking small steps at a time is important, at least you try. I do not want to throw up my meals. I know how strenuous that is on my body, so instead I try to keep to my daily food intake to a minimum, because I know that if I break this I will collapse. I do not starve myself, but my diet does consist of eating about 800 to 1,200 calories a day and that’s about it. Going from 131 lbs, to what I am today 112 lbs.

Thank you for hearing my story. And for all those who do not love themselves, and are suffering day by day with the same issues, I am here to let you know there is hope. Just let yourselves be loved. That is the one thing that has helped me pull through this, knowing that I am loved and cared for. That I have two gorgeous children that love me, and a husband that would give up his life just to see me smile.

I know that my problem is more focused on my depression and low self esteem I have for myself than anything else. But I refuse to let this enemy (anorexia/bulimia) take over my life, for I am stronger than that.

Thank you, CINDY 🙂

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