Letter to friends and family

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I have read this many times before but found it again and thought I would share it. It is written so well and expresses how lupies feel in general… I did not write this although it fits me well…

Enjoy!

A letter to be shared with friends and family
by Theresa Stoops in Florida

WHAT YOU SHOULD KNOW ABOUT ME

My pain – My pain is not your pain. Taking your arthritis medication will not help me. I cannot work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is not well understood, but it is real.

My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

My forgetfulness – Those of us who suffer from it call it brain fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age, but may be related to sleep deprivation caused by chronic pain. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.

My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

My depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from Chronic Pain as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My ability to control my appetite is broken, and nobody can tell me how to fix it.

My need for therapy – If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot- filled. If I can stand the pain, regular massage can help, at least temporarily.

My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days, weeks, or even months. In fact, the good days are what keep me going.

My uniqueness – Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, hip pain or shoulder pain, or knee pain, but I do not have exactly the same pain as anyone else. I hope that this helps you understand me,

I have shared these thoughts with many “Lupies”, as we call our self, and they agree with me. So when you see someone at the store who gets out of the Handi-cap space and they look fine — Do not judge them as you may Not know their Inner pain.

==== And always remember I LOVE YOU! ====

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List of autoimmune diseases

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I was researching autoimmune disease and  found this list of many of them. It is eye opening to say the least. I was amazed how many there are. I actually have several on the list. So, in my attempt to educate others on autoimmune diseases, here is the list I found from the webpage “American Autoimmune Related Diseases Association”:

List of Autoimmune and Autoimmune-Related Diseases

 

  • Acute Disseminated Encephalomyelitis (ADEM)
  • Acute necrotizing hemorrhagic leukoencephalitis
  • Addison’s disease
  • Agammaglobulinemia
  • Allergic asthma
  • Allergic rhinitis
  • Alopecia areata
  • Amyloidosis
  • Ankylosing spondylitis
  • Anti-GBM/Anti-TBM nephritis
  • Antiphospholipid syndrome (APS)
  • Autoimmune aplastic anemia
  • Autoimmune dysautonomia
  • Autoimmune hepatitis
  • Autoimmune hyperlipidemia
  • Autoimmune immunodeficiency
  • Autoimmune inner ear disease (AIED)
  • Autoimmune myocarditis
  • Autoimmune pancreatitis
  • Autoimmune retinopathy
  • Autoimmune thrombocytopenic purpura (ATP)
  • Autoimmune thyroid disease
  • Axonal & neuronal neuropathies
  • Balo disease
  • Behcet’s disease
  • Bullous pemphigoid
  • Cardiomyopathy
  • Castleman disease
  • Celiac sprue
  • Chagas disease
  • Chronic fatigue syndrome
  • Chronic inflammatory demyelinating polyneuropathy (CIDP)
  • Chronic recurrent multifocal ostomyelitis (CRMO) 
  • Churg-Strauss syndrome
  • Cicatricial pemphigoid/benign mucosal pemphigoid
  • Crohn’s disease
  • Cogans syndrome
  • Cold agglutinin disease
  • Congenital heart block
  • Coxsackie myocarditis
  • CREST disease
  • Essential mixed cryoglobulinemia
  • Demyelinating neuropathies
  • Dermatitis herpetiformis 
  • Dermatomyositis
  • Devic’s disease (neuromyelitis optica)
  • Discoid lupus
  • Dressler’s syndrome
  • Endometriosis
  • Eosinophilic fasciitis
  • Erythema nodosum
  • Experimental allergic encephalomyelitis
  • Evans syndrome
  • Fibromyalgia**
  • Fibrosing alveolitis
  • Giant cell arteritis (temporal arteritis)
  • Glomerulonephritis
  • Goodpasture’s syndrome
  • Graves’ disease
  • Guillain-Barre syndrome
  • Hashimoto’s encephalitis
  • Hashimoto’s thyroiditis
  • Hemolytic anemia
  • Henoch-Schonlein purpura
  • Herpes gestationis
  • Hypogammaglobulinemia
  • Idiopathic thrombocytopenic purpura (ITP)
  • IgA nephropathy
  • IgG4-related sclerosing disease
  • Immunoregulatory lipoproteins
  • Inclusion body myositis
  • Insulin-dependent diabetes (type1)
  • Interstitial cystitis
  • Juvenile arthritis
  • Juvenile diabetes
  • Kawasaki syndrome
  • Lambert-Eaton syndrome
  • Leukocytoclastic vasculitis
  • Lichen planus
  • Lichen sclerosus
  • Ligneous conjunctivitis
  • Linear IgA disease (LAD)
  • Lupus (SLE)
  • Lyme disease, chronic 
  • Meniere’s disease
  • Microscopic polyangiitis
  • Mixed connective tissue disease (MCTD)
  • Mooren’s ulcer
  • Mucha-Habermann disease
  • Multiple sclerosis
  • Myasthenia gravis
  • Myositis
  • Narcolepsy
  • Neuromyelitis optica (Devic’s)
  • Neutropenia
  • Ocular cicatricial pemphigoid
  • Optic neuritis
  • Palindromic rheumatism
  • PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus)
  • Paraneoplastic cerebellar degeneration
  • Paroxysmal nocturnal hemoglobinuria (PNH)
  • Parry Romberg syndrome
  • Parsonnage-Turner syndrome
  • Pars planitis (peripheral uveitis)
  • Pemphigus
  • Peripheral neuropathy
  • Perivenous encephalomyelitis
  • Pernicious anemia
  • POEMS syndrome
  • Polyarteritis nodosa
  • Type I, II, & III autoimmune polyglandular syndromes
  • Polymyalgia rheumatica
  • Polymyositis
  • Postmyocardial infarction syndrome
  • Postpericardiotomy syndrome
  • Progesterone dermatitis
  • Primary biliary cirrhosis
  • Primary sclerosing cholangitis 
  • Psoriasis
  • Psoriatic arthritis
  • Idiopathic pulmonary fibrosis
  • Pyoderma gangrenosum
  • Pure red cell aplasia
  • Raynauds phenomenon
  • Reflex sympathetic dystrophy
  • Reiter’s syndrome
  • Relapsing polychondritis
  • Restless legs syndrome
  • Retroperitoneal Fibrosis
  • Rheumatic fever
  • Rheumatoid arthritis
  • Sarcoidosis
  • Schmidt syndrome
  • Scleritis
  • Scleroderma
  • Sjogren’s syndrome
  • Sperm & testicular autoimmunity
  • Stiff person syndrome
  • Subacute bacterial endocarditis (SBE)
  • Susac’s syndrome
  • Sympathetic ophthalmia
  • Takayasu’s arteritis
  • Temporal arteritis/Giant cell arteritis
  • Thrombocytopenic purpura (TTP)
  • Tolosa-Hunt syndrome
  • Transverse myelitis
  • Ulcerative colitis
  • Undifferentiated connective tissue disease (UCTD)
  • Uveitis
  • Vasculitis
  • Vesiculobullous dermatosis
  • Vitiligo
  • Wegener’s granulomatosis

**NOTE Fibromyalgia and Chronic Fatigue are listed, not because they are autoimmune, but because many persons who suffer from them have associated autoimmune disease(s)

Toxic Fatigue

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Thanks to the blog “Purple Thoughts” for this entry. I have read it before and it is well worth printing here. Hope it educates and explains it better than I can.

 

THE TOXIC FATIGUE OF LUPUS

BY GLORIA ROSENTHAL

Almost all lupus patients have heard the phrase “But you don’t look sick” and we cringe inside, knowing the speaker’s words do not convey the speaker’s true meaning: “You can’t be so sick if you look so well”.

The fatigue that comes with lupus elicits the same reaction. Try to explain the feeling to a friend and the response is often “I get tired, too”. I want to pounce on those words and say “tired? You get tired? I want to screech that the fatigue that comes with lupus is as unrelated to a “tired” feeling as a hang nail is to a broken arm. Calling toxic fatigue a tired feeling is like saying a major flood is a minor trickle of water.

So let’s talk, first about what lupus fatigue is NOT. It is not a tired feeling. It’s not a “want to take a nap” feeling. It’s not a “lazy day, think I’ll take it easy” feeling. It’s not a “wish I didn’t have to do this” feeling. What it is: is a full-body exhaustion that makes you feel as if you have no bones, that if you didn’t have skin wrapped around your body, you would melt down into nothingness like the Wicked Witch of the West. Or that you are a melting candle, except a candle has a wick and there is nothing in your body that feels that solid. On the other hand, your bones can feel so heavy that lifting your arms to wash your hair in the shower is a chore akin to a weightlifter hefting a 200 pound barbell. His task is easier, though, because as soon as he puts the barbell down, he’s through. But after you’ve soaped your hair, you have to rinse it. That means those bone-weary, heavy arms must be raised again and after the shower, these “barbells” must be toted around all day long for they cannot be discarded like the weight-lifters toys.

Eating too, is an exhausting habit, especially restaurant dining. There must be something in the atmosphere and a three course meal that makes the lupus body say. “Hey hold on there, why are you lifting a fork so many times?” or “You broke off one piece of roll and now you want to exert that physical activity again for another piece?”

Am I exaggerating? Of course, but just enough to get a point across, a point that the fatigue that accompanies lupus is not like any other feeling. It is indescribable, but I know that as these words are read by my fellow lupoids, heads will bob up and down in instant recognition, though that frantic activity (head bobbing) will create yet another bout of exhaustion.

How do I handle this extreme exhaustion? If I’m home, I get into bed when it hits though the toxic feeling that accompanies the fatigue makes me think that once I do that, I will never be able to get up again. However, experience tells me I will come out of it and will feel better when I do. I never refer to this melting away as a nap; it’s my afternoon “coma” and my husband tells me it is almost impossible to wake me. If he must do so, it some times takes ten minutes of gentle shaking (and maybe one minute of bulldozing tactics).

If I’m not at home when it hits, and I push through it from sheer will, it will be with me for the rest of the day. Even if I give in to it later, even if I crawl into bed after it has been with me for hours, I will not shake it. Years of dealing with it has taught me why this is so: the fatigue that comes with lupus hits hard and wants to be pampered but it knows, better than I do, just how much coddling it needs. If I bow to it, I’ll revive. If I don’t, the fatigue shakes its finger in my face and says “Okay kid, you asked for it; now it’s the rest of the day for you”. And so for the rest of that day, I am that wicked witch, that melting candle, that weightlifter. I try to work around it. I tell my good friends they have to pick up for lunch out. If I drive to them in the morning, later, with fatigue as my passenger, I will have a foot that’s too weak to depress a brake and arms not strong enough to turn a wheel. Some people understand, some never will. Perhaps this will help the ordinary fatigued person see that there is nothing ordinary about lupus exhaustion. I’m glad I’m finished here, because my body is warning me that a bout is coming and I’d better be going. My bed looks inviting and my fatigue will thank me for “putting it there” by giving me a few good hours later on.

Reprinted from News & Views Number 45 – March 1995 Lupus UK.

European Lupus Erythematosus Federation

For a print friendly version click here  THE TOXIC FATIGUE OF LUPUS

Common symptoms of Lupus

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I got this list from the lfa webite. It is important to note that this is the tool doctors use to decide if lupus may be the answer. Please read and learn. Thanks! j

 

Common Symptoms of Lupus

To help the doctors diagnose lupus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.

  1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
  2. Discoid rash – a rash that appears as red, raised, disk-shaped patches
  3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
  4. Oral ulcers – sores appearing in the mouth
  5. Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
  6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
  7. Kidney disorder – persistent protein or cellular casts in the urine
  8. Neurological disorder – seizures or psychosis
  9. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
  10. Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
  11. Abnormal antinuclear antibody (ANA)

People with lupus also may experience symptoms that do not appear among the ACR criteria:

  • fever (over 100° F)
  • extreme fatigue
  • hair loss
  • fingers turning white and/or blue when cold (Raynaud’s phenomenon)

What is Lupus?

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This is from the Lupus Foundation of America’s web page. You can read more at www.lfa.org.

What is Lupus

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (“foreign invaders,” like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues (“auto” means “self”) and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

  • Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
  • Lupus is not contagious, not even through sexual contact. You cannot “catch” lupus from someone or “give” lupus to someone.
  • Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
  • Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
  • Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.
  • It is believed that 5 million people throughout the world have a form of lupus.
  • Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too.
  • Women of color are 2-3 times more likely to develop lupus.
  • People of all races and ethnic groups can develop lupus.
  • More than 16,000 new cases of lupus are reported annually across the country.

Angry days

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Hello everyone! I hope you are all pain free and doing good.

The title of this post says it all about the last few days. I am still sick with the flu. Fevers, chills, dry cough, runny nose, headaches and blah. Please do be extra vigilant to keep from getting this flu!! It is a misery and since those of us with autoimmune diseases are usually on immunosuppressants of some sort, hyper vigilance is called for. I thought I was being vigilant yet here I sit, three weeks into it and no relief in sight.

So I have been a bit grumpy, to say the least. I have several reasons. First, I am sick. No explanation needed there. Second, I have been sick for three weeks now. That will make you grumpy too. Third, after waiting over a week to see the PA at my GP’s office, I was not looked at for the flu, but instead they went by what I made the appointment for ONLY. That was acid reflux. Yep, I sat at the doctors and was told I would only be seen for what I had made the appt. for, nothing more. If I needed to be seen for the flu, I needed to make another appt. Same thing for my foot. Ok, the foot I can understand but the flu??? Oh, and since two immediate family members recently had cancer in the uterus and ovaries, I actually asked for an order to get ct scan done just to be safe. I mean, she was writing an order for a chest X-ray so why not? I told her why I wanted it. I was told that would be a entirely new appt and she would not write those orders for me! So, if I needed all these things looked into, then three more appts. would be needed. Seriously!!!

Now having worked in the medical field (nursing), I was flabbergasted!! I understand not addressing my foot issue, but to tell me no orders would be written for tests that I could get done at the same trip to the hospital was absolutely beyond my comprehension. Click, click print and done. Nope. When I said how much easier it would be to do them all at the same trip I was told ” people have to get them done at different times all the time”. Not exactly those words but actually ruder.

So, I have been toying with the idea of changing my doctor (gp) for a bit lately and today tipped the scale. I waited to see them even though I was sick, and have lupus, and yet I could not be treated for anything other than acid reflux!!!!

See ya family practice I have gone to for some thirty years!!! I will find one that actually treats their patients with compassion and caring!!! I have had enough!!!

First, I am on a VERY fixed income. Second, the hospital is in Dayton Ohio so I ration my gas and would like to make it all in one day. Third, I am a human being that typically will NOT go to the doctor UNLESS I am quite ill. You could even say slightly non compliant. If I make an appt. it is not a little thing to me. If I could afford all those visits in the first place, I would not wait until I have to be seen.

So, I got a handout about gerd, an order for a chest X-ray, and $83.00 poorer for wasting my time. This has upset me so much I came home and cried.

Now on to find a new doctor. My daughter told me of the one they see and I am thinking next month I can set up an appointment and see how it goes. I cannot afford another doctor appt this month. Sucks to be me right now but I will survive!

In the meantime, I can always go to the ER where they treat me with more respect and dignity then my family doctors “professionals”.

Still Alive

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Well I am still alive and kicking here in Ohio. I must say though, this flu sucks. I have gone from vomiting and diarrhea onto fevers, chills, aches and coughing with sinus pressure. Yeah, it sucks to be me right now.

No matter that though. I want to ask that all my readers do me a favor please. Actually two. First, please pray for my friend Brian and his wife. They live in Tennessee. Their new baby developed an issue and while at the hospital, it was discovered there is a heart issue. The baby was airlifted to children’s hospital in cincinnati and is scheduled to have surgery. This sweet couple need all the help and prayers they can get! On Facebook, you can read their story at the page, “Lucas Strong”. Please keep this family in your prayers!

Second, I have another friend whose grandson has a rare form of cancer. He had a none marrow transplant and has declined steadily ever since. He is soon now to have no more pain but his family, including my friend who is his grandmother, are experiencing emotionally devastating pain as they let him go. Ironically both children are at cincinnati children’s hospital.

So I ask for prayers for these two families who are dealing with so many different issues right now. You don’t need their names, since I know God knows who they are. I thank you.

As I write this I am watching the snow plow clearing our road. We got seven inches of snow a few days ago and have received around three inches so far tonight. I think our mild winter last year is resulting in the snow of this year.

I will be seeing two doctors in the next week and a half. Hopefully I can get this flu over with and move forward again. I just have not been well and that’s why I have not been on here.

Stay safe and warm out there!! ~Jen