The sickness, the sorrow, no talks of tomorrow: The drugs that keep me alive

Coumadin is an anticoagulant (blood thinner). It reduces the formation of blood clots. It works by blocking the synthesis of certain clotting factors. Without these clotting factors, blood clots are unable to form. Coumadin may also be used for purposes other than those listed in this medication guide (like in poisons used to kill rodents). This medication can cause birth defects in an unborn baby. Carry an ID card or wear a medical alert bracelet stating that you are taking Coumadin, in case of emergency. Coumadin interacts with many other drugs, and these interactions can be dangerous, even fatal. Avoid sudden changes in your diet. Vitamin K decreases the effects of Coumadin. Large amounts of vitamin K are found in foods such as liver, broccoli, brussels sprouts, spinach, Swiss chard, coriander, collards, cabbage, and other green leafy vegetables. Do not change the amount of these foods in your diet without first talking to your doctor. Avoid eating cranberries, drinking cranberry juice, or taking cranberry herbal products. Avoid drinking alcohol, which can increase some of the side effects of Coumadin. Do not take this medicine if you have:

• a bleeding disorder such as hemophilia;

• a blood cell disorder such as anemia;

• a stomach ulcer or bleeding in the stomach;

• a history of aneurysm, blood clot, or bleeding in your brain; or

• an infection of your heart, fluid or swelling around your heart.

FDA pregnancy category X. Coumadin can cause miscarriage, stillbirth, birth defects, or fatal bleeding in an unborn baby. Do not use Coumadin if you are pregnant. Tell your doctor right away if you become pregnant during treatment. Use an effective form of birth control while you are using this medication.

Before taking Coumadin, tell your doctor if you have:

• kidney disease;
• liver disease;

• celiac sprue (an intestinal disorder);

• a recent injury, surgery, or medical emergency;

• high blood pressure;

• severe or uncontrolled diabetes;

• polycythemia vera;

• congestive heart failure;

• cancer;

• overactive thyroid;

• a seizure disorder for which you take an anticonvulsant such as phenytoin (Dilantin) or phenobarbital (Luminal); or

• a connective tissue disorder such as Marfan Syndrome, Sjogren syndrome, scleroderma, rheumatoid arthritis, or lupus.

Tramadol is an atypical opioid which is a centrally acting analgesic, used for treating moderate to severe pain. It is a synthetic agent, and appears to have actions on the μ-opioid receptor as well as the noradrenergic and serotonergic systems. The most commonly reported adverse drug reactions are nausea, vomiting, sweating and constipation. Drowsiness is reported, although it is less of an issue than for other opioids. Respiratory depression, a common side effect of most opioids, is not clinically significant in normal doses. By itself, it can decrease the seizure threshold. When combined with SSRIs, tricyclic antidepressants, or in patients with epilepsy, the seizure threshold is further decreased. Seizures have been reported in humans receiving excessive single oral doses (700 mg) or large intravenous doses (300 mg).

Hydroxychloroquine is used to prevent or treat malaria infections caused by mosquito bites. It does not work against certain types of malaria (chloroquine-resistant). The United States Center for Disease Control provides updated guidelines and travel recommendations for the prevention and treatment of malaria in different parts of the world. Discuss the most recent information with your doctor before traveling to areas where malaria occurs.

This medication is also used, usually with other medications, to treat certain auto-immune diseases (lupus, rheumatoid arthritis) when other medications have not worked or cannot be used. It belongs to a class of medications known as disease-modifying antirheumatic drugs (DMARDs). It can reduce skin problems in lupus and prevent swelling/pain in arthritis, though it is not known exactly how the drug works.

This medicine can cause nausea, stomach cramps, loss of appetite, diarrhea, dizziness, or headache may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly. This medication may infrequently cause serious (sometimes permanent) eye problems or muscle damage, especially if you take it for a long time. Seek immediate medical attention if any of these unlikely but very serious side effects occur: sensitivity to light, vision changes (e.g., blurred vision, seeing light flashes/streaks/halos, missing/blacked-out areas of vision), muscle weakness. A very serious allergic reaction is unlikely, but seek immediate medical attention if it occurs. Symptoms of a serious allergic reaction may include: rash, itching, swelling, dizziness, trouble breathing.


and SOME of the meds I've taken in the past (can't remember them all...there have been so damn many)

Prednisone is in a class of drugs called steroids. Prednisone prevents the release of substances in the body that cause inflammation. Prednisone is used to treat many different conditions such as allergic disorders, skin conditions, ulcerative colitis, arthritis, lupus, psoriasis, or breathing disorders. Prednisone may also be used for other purposes not listed in this medication guide. Your steroid medication needs may change if you have any unusual stress such as a serious illness, fever or infection, or if you have surgery or a medical emergency. Prednisone can weaken your immune system, making it easier for you to get an infection or worsening an infection you already have or have recently had.

Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Call your doctor at once if you have any of these serious side effects:

• problems with your vision;

• swelling, rapid weight gain, feeling short of breath;

• severe depression, unusual thoughts or behavior, seizure (convulsions);

• bloody or tarry stools, coughing up blood;

• pancreatitis (severe pain in your upper stomach spreading to your back, nausea and vomiting, fast heart rate);

• low potassium (confusion, uneven heart rate, extreme thirst, increased urination, leg discomfort, muscle weakness or limp feeling); or

• dangerously high blood pressure (severe headache, blurred vision, buzzing in your ears, anxiety, confusion, chest pain, shortness of breath, uneven heartbeats, seizure).

• sleep problems (insomnia), mood changes;

• acne, dry skin, thinning skin, bruising or discoloration;

• slow wound healing;

• increased sweating;

• headache, dizziness, spinning sensation;

• nausea, stomach pain, bloating; or

• changes in the shape or location of body fat (especially in your arms, legs, face, neck, breasts, and waist).

They forgot to mention weakening of bones, joints and tissue, which can cause neucrosis, which I have in my right hip. A permanent damage, a permanent limp when it's bad. They also didn't emphasis that it can make you so depressed that you'll attempt suicide, your mood swings are so erratic that it's hard to function, your eye sight and hearing will be greatly changed and that you eat until it hurts.

Plavix keeps the platelets in your blood from coagulating (clotting) to prevent unwanted blood clots that can occur with certain heart or blood vessel conditions. Plavix is used to prevent blood clots after a recent heart attack or stroke, and in people with certain disorders of the heart or blood vessels. You may also have bleeding on the inside of your body, such as in your stomach or intestines. Call your doctor at once if you have black or bloody stools, or if you cough up blood or vomit that looks like coffee grounds. These could be signs of bleeding in your digestive tract. Avoid drinking alcohol while taking Plavix. Alcohol may increase your risk of bleeding in your stomach or intestines. Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Stop using Plavix and call your doctor at once if you have any of these serious side effects:

• nosebleed or other bleeding that will not stop;

• black, bloody, or tarry stools;

• coughing up blood or vomit that looks like coffee grounds;

• chest pain or heavy feeling, pain spreading to the arm or shoulder, nausea, sweating, general ill feeling;

• sudden numbness or weakness, especially on one side of the body;

• sudden headache, confusion, problems with vision, speech, or balance; or

• pale skin, easy bruising or bleeding, weakness, fever, and urinating more or less than usual.

• stomach pain;

• runny or stuffy nose, cough, sore throat; or

• mild headache or dizziness.

Azathioprine (or Imuran) is used to inhibit the immune response that causes rejection of kidney transplants. Azathioprine is also used for the treatment of severe, active rheumatoid arthritis. It is considered a "second-line," or "slow- acting" drug and is usually reserved for rheumatoid arthritis patients who do not respond to other first-line or second-line medications. Azathioprine can cause an increase in cancer risk when used long-term. This particular risk increases in patients with a prior history of treatment with other powerful immunosuppressants, such as Cytoxan, Leukeran, and Alkeran. It also increases the risk of serious infections. Azathioprine can impair fertility by reducing sperm counts in males. Because azathioprine's toxicity increases when taken with the gout medication allopurinol (Zyloprim), its dose is reduced with simultaneous use. Severely low white blood counts can occur when taken with other drugs that can affect the bone marrow or with ACE-inhibitor class drugs used to treat elevated blood pressure, such as Accupril and Vasotec. The safety and effectiveness for use in children has not been established. Azathioprine is transferred to the fetus and is avoided in pregnancy. The most common serious side effects of azathioprine involve the blood elements and gastrointestinal system. Azathioprine can cause serious lowering of the white blood cell count, resulting in an increased risk of infections. This can reverse when the dose is reduced or temporarily discontinued. Azathioprine can cause nausea, vomiting, and loss of appetite, which can resolve when the dose is reduced or divided through the day. Azathioprine can also cause liver toxicity (in less than 1% of rheumatoid arthritis patients). All patients taking azathioprine require regular blood testing for blood counts and liver function tests for monitoring. Other side effects encountered less frequently include fatigue, hair loss, joint pains, and diarrhea.


Zocor is a cholesterol-lowering medication that blocks the production of cholesterol (a type of fat) in the body. Zocor reduces low-density lipoprotein (LDL) cholesterol and total cholesterol in the blood. Lowering your cholesterol can help prevent heart disease and hardening of the arteries, conditions that can lead to heart attack, stroke, and vascular disease. In rare cases, Zocor can cause a condition that results in the breakdown of skeletal muscle tissue. This condition can lead to kidney failure. Call your doctor at once if you have unexplained muscle pain or tenderness, muscle weakness, fever or flu symptoms, and dark colored urine. This medication can cause birth defects in an unborn baby. Do not use if you are pregnant.


So if I don't take the Coumadin, i'll most likely die from some kind of blood clot. I have half a spleen, have had several mini strokes, 2 heart attacks and a clot can end up anywhere.
Tramadol is supposed to help with the pain, but all it does it mellow me out.
Plaquenil is suppressing my immune system so that the lupus stops attacking my organs and my joints. It's pretty unsuccessful, but I take it anyway. Apparently on a cellular level, it's working, even if I'm still in pain every day, showing signs of bad flares and sick. Funny how that works.
And here I am, 24 and childbearing age and not only because of the medication, but also my lupus, probably won't ever get the chance.

I try not to be bitter about a lot of things. Folks flake out because they can't handle seeing me this way (and in the past when it was worse, folks were even faster to leave) or being around something so "fragile" and feeling "so powerless."
How do they think it makes ME feel to be left alone with this?
Over the past 7 years, I've tried so many things to alleviate this god damn curse of a disease. Before with the Lupus and just my heart, I could deal. It was what it was and I did what I had to do. It's a muscle disease thats also attack my organs. My body is attacking itself, treating ME like the disease. Fine. But then I find out I've had this blood clotting things all along as well and it's a whole other ball of responsibilities, more medication, more monitoring, more risk.

It's been a couple years now that I've been taking the blood thinner. The doctor told me I have to be on it for the rest of my life. I might as well get my tubes tied in that case. Some folks say maybe things will change, maybe things will get better. But I've been experiencing these 7 years and seeing it change for the worse.

I smile. I work. I hang out with my friends. I live the joys of life. I do what I love to do. I experience things. I try to live my life as a good person and do good things and help people every day. I do the best I can. And still for some reason I am being punished with these illnesses and I don't know why. I try to figure out what I did. Of course I'm not perfect, but do I deserve this? Does anyone?
Right now I am in so much pain. My joints, my hip, my back, my legs. Why? And I'm not supposed to feel lonely with this. I'm left alone to deal and I'm not supposed to feel lonely? Either I'm treated like a damn fragile glass doll, completely discredited as if I'm making it all up, told that I'm not trying hard enough to get better OR left alone completely to figure it out on my own.

None of it is fair and none of it makes sense.
I keep thinking about going to a healer. Funny how I can heal others, but not myself. How I can sooth the sickness, touch the grief, bring the darkness out of anyone else and never for myself?

Maybe it's time to visit someone who can actually help me.

No matter how much information I try to show people, they'll never understand. And they never will. And they wonder why I just tell them to hell with it and keep alone. It's not worth it in the end. I'm all I have in the end. You just get use to it after a while and then you grow to only want to live that way.

Watch what you eat, get enough sleep, no drinking, don't mix the wrong drugs, get enough vit k, no sun, don't eat certain fruits, don't eat certain veggies, keep away from hard exercise, don't stay out late, don't get up too early, don't run, don't stand too long, no hot tub, no sauna, no beach, no children, no spouse, no friends, no life, no love, no nothing.