Oh to Remember Better Days

Today is beginning to turn into a beautiful day! I would love to enjoy it. To do so, I need to be in the shade (where it is noticeably cooler) and wrapped in a warm blanket. Yeah, I am that person. If I can get warm, I might shed the blanket but who knows?

As I write this, my husband is weed eating the yard he mowed yesterday. It is good to see him out doing things and feeling so much better. I am so happy for him to be as normal as he can be despite his issues.

Today I have two people on my mind. One is a dear lifetime friend of mine who is undergoing a tonsilectomy today at age 53. She had some growths and needs them removed. The doctor doesn’t think they are cancerous but will biopsy them to make sure. I am thinking of you Joanne!

The other is my niece, Alli. She has been having all kinds of issues in her tummy lately. She has been unable to keep anything down for over two weeks now. I hope they find the problem and resolve it. She is undergoing scopes today to find the issues. I am keeping her in my thoughts as well.

As for me, well, I see my rheumy on Thursday. I am discussing with him possibly some prednisone and a few other items. I wanted to get back on the benlysta trial that is similar to the one I did a few years ago but I am not eligible because I was on the other one! So, I need to see about getting on the infusions, which my insurance will not cover. Why is it so hard tog et care for us lupies? I mean, approve the first drug ever for lupus and insurance companies make it cost prohibitive for the patients who need it! I wish we went back to when the doctors actually made these decisions, not some pencil pusher in an office building.

Well, enough ranting for today! I will close with a few pics of the parmesan bread I made yesterday. Have a great day out there everyone!!

I Was Wrong Again

I thought that spring had finally come to our area here in Ohio. I was wrong. We are getting ready for rain tonight and tomorrow, and following that rainy cold front will be temperatures back in the 40′s. Really! I cannot make this stuff up!

I wondered why all day yesterday and today I was swollen in my joints and hurting all over. Now it all makes sense.

I just wish that Ohio’s bipolar weather would settle into one season. Warm, cold or hot. I don’t really care at this point. Just pick one and stick with it. This 80′s in the afternoon and 40′s overnight stuff is hurting me and many of my fellow autoimmune folks. Just stop! Yeah right, like I can change the weather…ha ha.

Hope you are not hurting in your area from crazy weather like we are here in Ohio! Have a good one!!

Letter to friends and family

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! ====

List of autoimmune diseases

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)

The Results Are In

As I stated previously, I had a colonoscopy done a week ago on Monday. Things did not go as I expected. Not to rehash but they found four polyps, three of which were benign and small and one which was questionable and 3 cm in size!! I got worried.

Now as a lupus patient, it is not wise to get too worried, but I wanted to be prepared in case it turned out to be bad news. You know, think the worst and hope for the best. Uh huh. I did just that. I scanned the internet for colon cancers and what a malignant polyp looked like. I checked out treatments for cancer. Basically I scared myself to death. Whew! Job is now complete.

I went on Monday for my follow up appointment. My gastroenterologist told me that the big polyp was a type of precancerous cells that is fast at changing to cancer. It could have been worse had I waited much longer to have this procedure. He said he feels sure he got most of it out. It does not warrant another procedure for one year. No more than one year. If I have any issues before that, we will decide how to proceed sooner. In the meantime, he is double checking the tests that were done, along with the hospital records to make sure al is well and we can wait. Whew!

Crisis averted for now. So, now I am feeling a little more relaxed and not so stressed. Thanks be to God! I wanted to share this good news with you all because I am prone to share bad new easily enough so good news should be shared too! Thanks for the prayers!

This says it all don’t you think?

Image

Toxic Fatigue

 

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

 

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?

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.

Cats and chronic disease

I am repeating this post because, believe it or not, while I was at the doctor’s office today, the Arthritis Today magazine had an article about pets and arthritis. Ironic, but I figured it made for a re-posting of this older post. Enjoy!

 

I have a cat. Her name is Shelby. She was a foundling who adopted me. She is also so much more than just a feline friend.

Shelby has an intuitive nature that allows her to see when I am ill and respond to me. When I am in bed, like now, she is laying next to me. When I am asleep, she lays either next to me or above my head. Some days, she is not around and that is usually when I am feeling good. She goes about her business as she normally would do.

When my lupus is acting up, though, she is right by my side, purring and rubbing on me and trying to help me feel better. It is uncanny, (or should I say, uncatty) how she knows without me saying a word, that I feel awful. She is not overly in my face, but she is on the periphery should she be needed.

While my cat is unique, she is not the only one who is intuitive. I read a story a few years back about a nursing home that had “adopted” a stray cat. The cat was allowed to roam the halls and “visit” with the residents. This cat had an intuitve nature too. It was discovered that the cat would go to a particular resident who was imminently ready to pass away. When a resident was at this point, the cat could not be coerced to leave the room of the resident. It would stay until the person passed away. It became noticible to the staff and they would know by the cats behavior, whether there was an impending death or not. They felt that the cat didn’t want the person to be alone, so it would stay on the bed with the person until after they passed.

I also saw a story about cats and patients with AIDS. The story said that those patients who had cats, tended to live longer than those who did not have a pet cat. Cats were the pet of choice because they did not require as much work as dogs and chronically ill people may not be able to give a dog the exercise they need.  Who knew?

So, my Shelby has this same empathy, but for me. She has been a true and loyal friend in my down times and always helps me with her presence. She is not a “talker” type of cat, but she is always here, by my side, when I need her most. She does not judge me, or make me feel I am worthless when I cannot do things. She is just here, faithfully, making me fell loved.

Funny that a cat can do that and so many humans can’t. We should take a lesson from the animals on this one!