Monday, October 31, 2011

Throbbing in my head

I get throbbing in my head when I do too much, which is not much at all for a normal healthy person.  I could have just cooked dinner and get completely exhausted and my head will start to throb.  It is a very strange feeling because it is not a headache.  If I get stressed out over something I also get this bad feeling in my head.  I am not sure if most people with lupus get this or what but it is not pleasant.  I wish just being happy or excited over something would make me able to bypass this feeling but it doesn't.  Some people have said to me that I need to be positive or when something good happens that it should make me feel better.  My illness is not dependent on my moods, meaning, if I am happy my lupus symptoms will go away.  It is not depression that causes my illness, my pain, my head throbbing.  When I get excited over something like a new pair of fantastic shoes I still feel sick.  Actually getting overly excited exhausts me.  I even have to take happiness in stride!  I just want people to know that lupus is a disease that we cannot control, we cannot be so positive that we feel better.  I try to think positively most days but it does not change how I feel.  Here is some information from the lupus-mayo clinic website about lupus.


By Mayo Clinic staff Lupus is a chronic inflammatory disease that occurs when your body's immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.
Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus — a facial rash that resembles the wings of a butterfly unfolding across both cheeks — occurs in many but not all cases of lupus.
Some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs or even sunlight. While there's no cure for lupus, treatments can help control symptoms.


By Mayo Clinic staff No two cases of lupus are exactly alike. Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterized by episodes — called flares — when signs and symptoms get worse for a while, then improve or even disappear completely for a time.
The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. The most common signs and symptoms include:
  • Fatigue and fever
  • Joint pain, stiffness and swelling
  • Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose
  • Skin lesions that appear or worsen with sun exposure
  • Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
  • Shortness of breath
  • Chest pain
  • Dry eyes
  • Headaches, confusion, memory loss
When to see a doctor
See your doctor if you develop an unexplained rash, ongoing fever, persistent aching or fatigue.


By Mayo Clinic staff Inflammation caused by lupus can affect many areas of your body, including your:
  • Kidneys. Lupus can cause serious kidney damage, and kidney failure is one of the leading causes of death among people with lupus. Signs and symptoms of kidney problems may include generalized itching, chest pain, nausea, vomiting and leg swelling (edema).
  • Brain. If your brain is affected by lupus, you may experience headaches, dizziness, behavior changes, hallucinations, and even strokes or seizures. Many people with lupus experience memory problems and may have difficulty expressing their thoughts.
  • Blood and blood vessels. Lupus may lead to blood problems, including anemia and increased risk of bleeding or blood clotting. It can also cause inflammation of the blood vessels (vasculitis).
  • Lungs. Having lupus increases your chances of developing an inflammation of the chest cavity lining (pleurisy), which can make breathing painful.
  • Heart. Lupus can cause inflammation of your heart muscle, your arteries or heart membrane (pericarditis). The risk of cardiovascular disease and heart attacks increases greatly as well.
Other types of complications
Having lupus also increase your risk of:
  • Infection. People with lupus are more vulnerable to infection because both the disease and its treatments weaken the immune system. Infections that most commonly affect people with lupus include urinary tract infections, respiratory infections, yeast infections, salmonella, herpes and shingles.
  • Cancer. Having lupus appears to increase your risk of cancer.
  • Bone tissue death (avascular necrosis). This occurs when the blood supply to a bone diminishes, often leading to tiny breaks in the bone and eventually to the bone's collapse. The hip joint is most commonly affected.
  • Pregnancy complications. Women with lupus have an increased risk of miscarriage. Lupus increases the risk of high blood pressure during pregnancy (preeclampsia) and preterm birth. To reduce the risk of these complications, doctors recommend delaying pregnancy until your disease has been under control for at least 6 months.
  • Tests and diagnosis

    By Mayo Clinic staff Diagnosing lupus is difficult because signs and symptoms vary considerably from person to person. Signs and symptoms of lupus may vary over time and overlap with those of many other disorders. No one test can diagnose lupus. The combination of blood and urine tests, signs and symptoms, and physical examination findings leads to the diagnosis.
    Laboratory tests
    Blood and urine tests may include:
  • Complete blood count. This test measures the number of red blood cells, white blood cells and platelets as well as the amount of hemoglobin, a protein in red blood cells. Results may indicate you have anemia, which commonly occurs in lupus. A low white blood cell or platelet count may occur in lupus as well.
  • Erythrocyte sedimentation rate. This blood test determines the rate at which red blood cells settle to the bottom of a tube in an hour. A faster than normal rate may indicate a systemic disease, such as lupus. The sedimentation rate isn't specific for any one disease. It may be elevated if you have lupus, another inflammatory condition, cancer or an infection.
  • Kidney and liver assessment. Blood tests can assess how well your kidneys and liver are functioning. Lupus can affect these organs.
  • Urinalysis. An examination of a sample of your urine may show an increased protein level or red blood cells in the urine, which may occur if lupus has affected your kidneys.
  • Antinuclear antibody (ANA) test. A positive test for the presence of these antibodies — produced by your immune system — indicates a stimulated immune system. While most people with lupus have a positive ANA test, most people with a positive ANA do not have lupus. If you test positive for ANA, your doctor may advise more-specific antibody testing.
Imaging tests
If your doctor suspects that lupus is affecting your lungs or heart, he or she may suggest:
  • Chest X-ray. An image of your chest may reveal abnormal shadows that suggest fluid or inflammation in your lungs.
  • Echocardiogram. This test uses sound waves to produce real-time images of your beating heart. It can check for problems with your valves and other portions of your heart.
Lupus can harm your kidneys in many different ways and treatments can vary, depending on the type of damage that occurs. In some cases, it's necessary to test a small sample of kidney tissue to determine what the best treatment might be. The sample can be obtained with a needle, or through a small incision.

Treatments and drugs

By Mayo Clinic staff Treatment for lupus depends on your signs and symptoms. Determining whether your signs and symptoms should be treated and what medications to use requires a careful discussion of the benefits and risks with your doctor. As your signs and symptoms flare and subside, you and your doctor may find that you'll need to change medications or dosages. The medications most commonly used to control lupus include:
  • Nonsteroidal anti-inflammatory drugs (NSAIDs). Over-the-counter NSAIDs, such as naproxen (Aleve) and ibuprofen (Advil, Motrin, others), may be used to treat pain, swelling and fever associated with lupus. Stronger NSAIDs are available by prescription. Side effects of NSAIDs include stomach bleeding, kidney problems and an increased risk of heart problems.
  • Antimalarial drugs. Medications commonly used to treat malaria, such as hydroxychloroquine (Plaquenil), also can help control lupus. Side effects can include stomach upset and, very rarely, damage to the retina of the eye.
  • Corticosteroids. Prednisone and other types of corticosteroids can counter the inflammation of lupus, but often produce long-term side effects — including weight gain, easy bruising, thinning bones (osteoporosis), high blood pressure, diabetes and increased risk of infection. The risk of side effects increases with higher doses and longer term therapy.
  • Immune suppressants. Drugs that suppress the immune system may be helpful in serious cases of lupus. Examples include cyclophosphamide (Cytoxan), azathioprine (Imuran, Azasan), mycophenolate (Cellcept), leflunomide (Arava) and methotrexate (Trexall). Potential side effects may include an increased risk of infection, liver damage, decreased fertility and an increased risk of cancer. A newer medication, belimumab (Benlysta) also reduces lupus symptoms in some people. Side effects include nausea, diarrhea and fever.

Coping and support

By Mayo Clinic staff If you have lupus, you're likely to have a range of painful feelings about your condition, from fear to extreme frustration. The challenges of living with lupus increase your risk of depression and related mental health problems, such as anxiety, stress and low self-esteem. To help you cope with lupus, try to:
  • Learn all you can about lupus. Write down all the questions you have about lupus and ask them at your next appointment. Ask your doctor or nurse for reputable sources of further information. The more you know about lupus, the more confident you'll feel in your treatment choices.
  • Gather support among your friends and family. Talk about lupus with your friends and family and explain ways they can help out when you're having flares. Lupus can be frustrating for your loved ones because they usually can't see it and you may not appear sick. They can't tell if you're having a good day or a bad day unless you tell them. Be open about what you're feeling so that your friends and family know what to expect.
  • Take time for yourself. Cope with stress in your life by taking time for yourself. Use that time to read, meditate, listen to music or write in a journal. Find activities that calm and renew you.
  • Connect with others who have lupus. Talk to other people who have lupus. You can connect with other people who have lupus through support groups in your community or through online message boards. Other people with lupus can offer unique support because they're facing many of the same obstacles and frustrations that you're facing.

Sunday, October 30, 2011

Antibiotic therapy for rheumatic diseases

Antibiotic therapy for rheumatic disease has been studied and used for decades with success for thousands of sufferers.  Why is it not more well known and why are there so many rheumies that do not have this information or use this for treatment?  Antibiotics are low cost, low side effect, easy tolerated, and easily found drugs.  They are so much less damaging to the body than other gold standard forms of treatment such as methotrexate, Imuran, Cellcept and many other harmful drugs.  Why is it not on lupus websites?  This is not a conspiracy theory type of treatment, it does not have a negative effect on the medical community or on drug companies, so I am not sure why not all doctors treating these diseases are not using antibiotics.  I first researched this on my own via google and found articles proving the effectiveness of antibiotics in inflammatory diseases (rheumatic diseases) and I was surprised that this was not on any websites (mayo clinic, LFA, SLE, etc.) that list treatments for lupus.  I researched this form of treatment because I was on Cipro for a bladder infection and was surprised at how much better I felt, with the only difference being that I was treated with antibiotics.  I knew that this was not just in my head I had no thoughts that Cipro would do anything helpful or other wise for my disease.  I was pleasantly surprised that my rheumy knew about this treatment and was just as happy about me starting it as I was, I was very fortunate, because there are many in this field that do not know about antibiotic use for lupus.  I have been on Doxycycline for a month in a half or two months (sorry, lupus brain fog) my husband and I can definitely see a difference.  For example, I can get out of bed in the morning before my prednisone and pain meds kick in, I used to have to wait an hour or so after I took my medications to get out of bed.  I can exercise more often, I can walk stairs a little better, I can go out for longer periods of time.  Keep in mind that I have failed a prednisone taper that I was on for about two weeks, so this is no miracle cure. I still felt very awful during my taper and my fever got too high to continue.  I do believe it is helping quite a bit, it is worth a try, and I have had NO bad side effects.  Here are some links for information documenting some studies of the usefulness of antibiotic therapy for rheumatic diseases, i.e lupus, RA, etc.  I hope this can help many more patients sick like me and together we can find our strength and healing.  Best wishes and gentle hugs.

Antibiotic therapy is based on the theory that inflammatory rheumatic diseases such as rheumatoid arthritis, scleroderma, lupus, juvenile rheumatoid arthritis, polymyositis, ankylosing spondylitis, etc. have an infectious cause such as mycoplasma and other bacterial L forms. Significant evidence supporting this theory has been published in medical literature for decades. The use of low dose antibiotics, particularly from the tetracycline or macrolide families, attack the disease process at its source, namely the infectious agent. In contrast to the treatment of ordinary, acute bacterial infections with faster growing bacteria, the bacterial forms which trigger the chronic infectious disease processes are much slower growing organisms; thus, the antibiotic protocols prescribed for treating the rheumatoid diseases are based on the use of long-term, low-dose antibiotics, usually given only three days per week - sometimes more frequently.
This therapy is equally effective in patients with severe and/or long-standing disease as it is in those with mild to moderate disease. Thomas McPherson Brown, M.D. (1906-1989), a well known rheumatologist who practiced in the Washington, D.C. area, pioneered this treatment over fifty years ago and successfully used it to treat over ten thousand patients during his lifetime.
In contrast, however, the toxic medications used by rheumatologists today in conventional therapy are prescribed to try and control or suppress symptoms rather than to eradicate the underlying bacterial infection, which is the root cause of the disease process. These more toxic drugs may or may not be effective. If they do work, it is only a matter of time before they either lose their effectiveness or the patient develops side effects, forcing him/her to discontinue usage of them. The patients often are left worse than before they ever started the medication.
The ultimate decision about whether this antibiotic therapy is appropriate for you should be made with advice from your physician. Treatment must be tailored to the individual patient. While this therapy is effective for the vast majority of rheumatoid patients, it does not always work for everyone. If treatment failure occurs, then other misdiagnosed medical problems must be investigated carefully, always keeping in mind that one can have more than one disease process as well as more than one diagnosis going on in one's body at the same time.

Thursday, October 27, 2011

The reality of predinsone

Tapering down on prednisone can be one of the hardest things to do when suffering with lupus.  I call it my abusive boyfriend and we have a love/hate relationship. I have been on this drug for almost three years.  I have been on high dose and low dose and moderate doses.  My normal dose being 4mg low dose, and I never thought the struggle with coming off of a non addictive drug would be so hard.  It is funny when people ask me if I am an addict because of prednisone, hehe, there is NO rehab for prednisone, I wish there was.  It is not addictive, it doesn't make me high, it just makes my inflammation so much less that I feel MUCH better.  Our bodies (everyone healthy or sick unless they have an adrenal gland disease, makes this hormone) Cortisol (hydrocortisone) is your bodies naturally producing steroid hormone.  Also know as glucocorticoid, which is produced by the adrenal gland. Essentially this is what prednisone is, being that prednisone is the synthetic, man made version of this hormone.  When you take prednisone even in short term you must start high and go lower on dosage.  Tapering.  On long term use the body gets lazy or smart, whatever, and your body stops producing this hormone, or depending on dosage relies on the extra hormone.  For healthy people who go on this drug or for others that do not have lupus or lupus like disease, can taper and just have the normal bad effects of tapering.  Moodiness, soreness muscles and or joint, fever, nausea and vomiting and most dangerous adrenal crisis.  These are the effects or withdrawal symptoms everyone gets from taper off of steroids, sounds bad enough right.  It must be done slowly and under a doctors care.  When one has lupus, we get all of these and the added bonus of lupus flares.  Which can cause all of the withdrawal symptoms ten fold.  We can normally feel withdrawal type symptoms daily from lupus with out withdrawing, because these are just symptoms of our disease.  When I taper I feel all of these withdrawal symptoms with depression.  Every thing seems sad, and I am very upset with my disease during my tapers.  I want off, there are many side effects from being
on steroids some of these I have had and some I have had to fortune to not suffer.  Weight gain, moodiness, sleeplessness, increased sweating, high sugar (diabetes), fluid retention, acne, stomach bleeding and ulcers, higher cholesterol levels, higher blood pressure, early cataracts and glaucoma, osteoporosis, muscle inflammation, adrenal gland suppression.  I have some of these but not all, but getting off is much more of a discomfort than being on.  Prednsione can make someone with inflammation feel so much better, it made me walk again within hours, it is a miracle drug for so many diseases.  BUT it can also become so damaging, it is a double edged sword, and I hate to love this drug.  This is why we need more drugs, safer drugs for those of us with lupus and other autoimmune disease like lupus.  I hope more people can understand the effects of prednisone now.  We are not drug addicts, and I am not knocking drug addiction it is a very serious disease, but I am not getting high from prednisone I am just trying to live better on it.

Tuesday, October 25, 2011

Today is going to be a good day!

I am going to be positive today, I feel okay and I am going to make a conscious effort to have a good day.  I am thankful for my many blessings and today I am going to count them.  I usually do this on most days trying not to let my disease get me down.  I have a beautiful life filled with love and joy.  Healthy, intelligent, happy children, handsome, kind, loving husband, wonderful kitty (if you know him, you understand just how fantastic this rescued cat is), helpful, fun, sweet friends, great neighborhood (excluding one or two strange families).  The list goes on and one for instance, I have health care which is very important for someone with a chronic illness, my husband has a good job, my children go to a fantastic school (report cards did not come out this year yet so I may post differently later, he, he).  I am also very thankful that lupus has not gone into any major organs as of yet, fingers crossed it stays that way.  Today is a day I will reflect upon my many blessings.

Monday, October 24, 2011

Drama Queen...

I called my rheumy today about trying Benlysta, I had been hearing great things from fellow lupies.  I have no clue why I got my hopes up thinking maybe this would be my savior.  I thought maybe now I will get my life back, feel like me again.  I was so positive and it was going to work for me.  My call back was a no, it is not appropriate for me due to my disease manifestations.  Meaning, I am not sick enough via blood work or this is what I take as the meaning.  I have been on prednisone going on two years and I have gone up and down, usually on purpose and a couple of times by mistake.  Lupus brain fog.  I am taking this badly I am being such a drama queen.  Why am I so upset over a drug I never tried, and I don't even know if it would even work for me??  For some reason (due to my prednisone use) my blood work does not correlate to how I feel.  My blood work looks good because I upped my prednisone to 20mg before my blood test by mistake, and I felt great for a week or so.  Sometime I think I have more than just lupus, there has to be more wrong with me.  I'll go into my rheumy and tell him, I have these symptoms I have more than lupus.  Well, these are all lupus symptoms, I know.  I am just a pain in the butt to my doctor, I know I am.  I don't listen so well but I want magical treatment with no bad side effects and I want to pretend that I am not sick someone else is.  Who me no, I am not weak, I am strong.  Whatever, I am being a drama queen a lot of people cannot take benlysta.  I guess I should be thankful I am not sicker than I already am.  I am just confused!!

Saturday, October 22, 2011


My shower took everything out of me today.  I feel like even while I lay in my bed resting that I am not resting enough.  The effort that it takes to breathe is too much and it hurts to breathe.  I try to take deep breathes to calm myself but it makes me more annoyed because it hurts!!  I have a comedy show to go to tonight and I have been afraid that I would be too ill to go, too tired.  I am worried that it will be too long and I will get my migraine back, get nausea, vomit, just lay still and beg to feel better.  I know how it feels to go out for a few hours and pay for days.  It makes me wish I never had anything to do because it is stressful to think about how hard it is to go anywhere.  Things that a healthy person would not think twice about and would look forward to, a comedy show, fun, relaxing, enjoyable.  It does not sound stressful to a normal, healthy person but anyone with a major illness can related to the what ifs.  I have learned that I can no longer have certain expectations, I cannot expect to feel well enough to go to school functions, out to dinner, out with friends, shopping.  I cannot expect that if I do have the energy or feel well enough to do those things that I will be fine after.  I will always have to lay down in bed for hours, maybe days, maybe nauseous, vomiting, with a fever, in terrible pain, hurting when I breathe.  Like some sick game of torture, a voodoo doll some one is twisting, poking, throwing, pounding on.  I wish I could sleep but my pain keeps me awake, too exhausted to sleep, sleep takes too much energy.  Maybe tomorrow I will be done with my lupus nightmare, I will be healthy again, I will go on a 3 mile run outside looking at the beautiful foliage.  I will play soccer with my kids, paint with them, bake their favorite apple crisp, cook their favorite dinner.  I will have all of this energy and I will be well, I will be me again!  But I know tomorrow I will be living with the wolf, tearing at me, tattering my soul, forbidding me to live freely.  I will be imprisoned in pain and exhaustion.  I will be confined to this illness.

Friday, October 21, 2011

Migraines and my head and doctors

Migraines, they are not a symptom of lupus or one of the criteria but they are one of the many pains that most of us deal with.  I get migraines daily, and I really do not feel like adding a neurologist to my list of specialists.  I take excedrine migraine every morning after I take my prednisone, but do not do this because it can cause your stomach to bleed.  I still have a headache but it is tolerable.  I also get this bad feeling in my head like pressure and if I don't lay down it gets worse, and I will get nauseous and vomit.  I have no clue why I get this bad feeling but it is always worse when I flare, when I am severely anemic or if my thyroid is off.  My thyroid has been level for a over a year, luckily that is easily taken care of unlike lupus.  I have described this feeling in my head to doctors and they are clueless, maybe it is part of my migraines maybe a neurologist is best to check this issue out.  I am just afraid of what another specialist might find, or if they would be willing  or unwilling to listen.  I have had enough bad experiences with doctors and I am delaying the awkward meeting.  Sitting on the cold examining table, Vulnerable, judged.  Wondering if I am worth his/her time, skills, testing, patience.  I have had one awful experience with a female doctor a rheumy, well it was more than once because I saw the woman on two different occasions.  I couldn't walk at the time so I can only imagine how badly she would treat a healthy seeming person.  Maybe I should only see male doctors, they don't usually decide to hate me at our initial meeting.  Although, I have had some excellent female doctors especially for female reasons, like pregnancy or a pap smear.  I think I would pick a male specialist as long as it is for something that does not require a speculum.  Maybe next time or the time after that or the time after that, I will speak to one of my doctors about my head problems, if I remember.

Wednesday, October 19, 2011

Let's talk medications shall we!

There are so many medications that most people with lupus take, some are for the disease itself and others are just to be more "comfortable" when dealing with the awful symptoms of lupus.  I take only one medication not lupus related and that is synthroid which is for my thyroid replacement hormone.  I had severe graves disease and had to get RAI to kill my thyroid, I tried the anti-thyroid meds first but I had bad side effects and could not tolerate them.  I take prednisone, doxycycline (new antibiotic treatment for lupus), protonix for stomach problems, bleeding, ulcers, nausea, tramadol for pain, vicodine for pain, excedrine migraine for migraine daily, (I take everything at least once daily), iron pills high dose for my severe anemia, zofran for nausea, benedryl to sleep, plaquenil for lupus.  I maybe be missing a few and depending on which doctor or specialist I see I have more for some issues.  I used to take two different heart medications but I am off of those now and those were due to severe graves.  Most of us with lupus collect autoimmune diseases we usually have more than one, and we get more over the years.  I am trying to stay off of methotrexate but I know it is in my near future, I am on antibiotic therapy first because it has less side effects but I am afraid that it is not working well enough.  A lot of people with lupus take methotrexate and other types of "prednisone sparing drugs" so they can get off of steroids.  Methotrexate is no angel and I am not ready to add another "dangerous" drug to my doses.  I am a lucky lupie because I am not being pushed on this drug, I am going to ease into, some people MUST go on it and do not have a choice.  This is why drugs like Benlysta are so important because we need need less harmful drugs to choose from, drug companies need to develop more less harsh medications.  Lupus is such a complex disease, probably one of the most complex because it can go into any part of your body without notice and destroy it.  Lupus does not follow any rules, and can go from mild to severe in days.  It still kills people, I know of quite a few people on many online support groups that have died due to the wolf.  Beautiful, kind, courageous, mothers, daughters, fathers, sons, people that add so much to so many peoples lives.  All of us take many medications, but some cannot be saved, some fight hard but lose their battle.  My love goes out to all those that have lost their lives and to their friends and families.  I tip my pill bottle to all of you lupies that have lost your battle.

Tuesday, October 18, 2011

Pain, pain and more pain...finding peace

How is it that everything can hurt in different ways at the same time?  Throbbing, aching, deep, sore, nagging, stabbing, pressure.  It hurts when I breathe, my ribs hurt, my joints hurt, my shoulders hurt, my back hurts, my eye sockets hurt, the top of my head hurts, my feet hurt, my wrists hurt, my knees hurt, my thighs hurt, my chest hurts, my elbows hurt.  Yes, I mean everything hurts even my organs feel sore.  Sometimes I would love a nice few days of a gentle coma to relax the pain out of me and allow me to rest, no pain, no worries.  I would feel the waves of serenity flow over me allowing myself to enjoy the comfort of quiet.  AHHHHHH!!  I will envision the beach and hear the relaxing waves that is what I do when it get windy at my house.   I pretend I am beach front and the waves are crashing making a beautiful harmony.  Calming, wind smelling fresh, salty, clean.  The lull of the ocean flow, so serene, peaceful.  I am part of something so much bigger than lupus than me, I am part of the beautiful earth.  Enjoying mother nature in all her glory, so impressed with her strength and magnificence.  Now I will be at peace.

Monday, October 17, 2011

Waking up with the wolf...this will work just try it

When I went to sleep last night I did not really think I would wake up renewed with vigor.  I know that when I wake up with the wolf, I am in pain, that is if I have even been able to sleep through the pain.  I eat two crackers and take my prednisone wait a few minutes and take my migraine medication and wait...for the pain to gently subside so I can get out of bed.  I need to take my boys to school, thank god for the heated front seats.  I am just starting my daily drug cocktail which never ends because I take my synthroid in the middle of the night.  I am always up anyway, and I cannot take it within four hours of most of my other medications, this is the only way I can make sure nothing interacts with it.  Stairs are always fun, I hate them and in turn they must hate me my legs scream in pain, up and down, up and down.  People in AA take life a day at a time, with lupus I take life minute by minute, I think I know the wolf but it laughs at me and will throw anything in my way.  Day by day would be a blessing, not that the disease of addiction is anything to blink at, it is a very serious disease that kills many.  I know how it feels to have people not take your disease seriously, I have people all the time that tell me, "I know someone, who knows someone that's a friend of my cousin, that has lupus, and they are fine and very active, more than I am!"  It is said smugly like I would choose to not walk for five months, like I am doing something wrong, maybe if I exercised more, I used to run everyday and lift weights 3 times a week.  Maybe if I ate healthier, I did that b/c I was too sick to eat much of anything, nothing changed.  Maybe if I thought more positively, or meditated, I do both nothing has changed.  Maybe if I got a massage, I tried that I couldn't get out of bed for three days after.  Maybe if I tried yoga, I did that I could only do the breathing and had a wonderful one on one session, it made my breathing even more painful than it already was.  Maybe if you try, herbal remedies, ha that's dangerous for me, I have to get the okay from my rheumy and that is usually a no because these are drugs too, just sold at the GNC.  If it boosts the immune system it is dangerous for me.  Why, because it is my own immune system that is attacking me.  Why, because that is what lupus does, because my body hates me!  Drink more water, I drink almost a gallon a day, hasn't helped.  Everyone has a remedy that would help them if they had the wolf, they wouldn't be as sick as I am because they know how they would deal with this disease.  It would be better than I do, and they would be cured.  I am not positive enough, do not exercise enough, don't eat well enough, don't stand on my head enough.  I wish any one of things things would work, I have tried and before my diagnosis I tried a lot of herbal remedies because I never felt well, nothing worked. 

Sunday, October 16, 2011

My daily struggle my love of prednisone

Welcome to my lupus blog.  You will have to excuse my errors that I may have while writing, it is part of my lupus brain fog.  I struggle everyday with this disease that has made my life difficult.  I know there are a lot of people with this disease that are much sicker than I and for that, I feel like ingrate.  I do feel very lucky for many things in my life, I have a wonderful supportive husband, intelligent, healthy children, I love my house and most of my neighbors, my boys go to a wonderful school.  I have so many things to be thankful for, but one thing hangs over everything I do, my lupus disease.  I wish I could say that lupus does not define me but it makes every decision for me, because this disease has taken over my life and left me almost useless, I am unable to control my life, lupus dictates what I can do, how much I can do, where I go, how I feel.  I don't feel like me anymore I am Mrs. Lupus, it has taken so much from me.  I am practically bed ridden on those few good hours on a few good days, I can go out to eat, shop or socialize however I pay for doing these normal things.  I will get very ill, nausea, vomiting, body pounding and throbbing in pain, exhaustion.  Even speaking to a friend on the phone can leave me in agony.  Healthy people have no clue how much energy it takes for people like me to do things they would never think twice about and I am happy for them.  I get told that I look so healthy and have gotten some pretty harsh remarks from people that think sick has a different face than me.  I am what sick looks like because lupus hides with in me and it does show it's ugly face sometimes, if I allow people to see me with out make up, or if I could ever get off of steroids, I would get very thin.  Prednisone is a devil with a pretty face, it makes me feel so much better and quickly, it gave me the ability to walk again within hours of the first dose, but it stabbed me in the back.  It made me dependent on it, not in a drug addict way, in a way that my body needs it to help fight against the bully, lupus.  I hate that I love this drug, because as much as it helps my disease, it hurts me and laughs at me with it's evil ways.  It makes me gain weight, moody, get high cholesterol, and other things that could pop up at anytime.  I try to taper but it makes my lupus symptoms so much worse as if I did not feel sick enough.  It never fails every time I have a few good hours, on a few good days, I start to taper .5 mg and the fun begins.  People often ask what about other drugs, especially doctors other than my rheumy, I tell them I am on many other medications but prednisone was my night and shinning armor and rescued me from the big bad lupus monster.