Hello once again!
As the title implies, this post is about priorities and listening so they can be placed properly. I have been quite depressed as of late. My lupus is really ugly right now. I am having major issues with my gi tract from top to bottom. I am dealing with drama within my family. I am back on prednisone. Basically, I cannot eat well, cannot sleep well, and am a round moon face sicko.
I had a bright spot yesterday I thought. My rheumatologist wants me to start Benlysta infusions. I was in the drug trial with real drug and it helped me a lot. Once it was approved though, the drug trial ended. So, he wants to do these infusions to try for remission. Remission is a word I have not heard for years!
Back to the story. My rheumy’s nurse called and said she had done the legwork and for me, my insurance would only cover these at an 80/20 ratio. In other words they would pay 80% and I would pay 20%. Ok, what does that mean? It means it is cost prohibitive for me. However, she next tells me that my 20% equals $250 per transfusion. Still cost prohibitive for me. Now she tells me that there is this gateway program that will pay for the med itself. So, I only have to pay the office visit ($40) to begin infusions and as for the $250, I can be billed and pay as I can! Wow! That is great news! Finally it is looking like I might get some type of relief from this all pervasive pain!
So, I decided to share this good news with my husband. I didn’t even finish the details before he exploded and told me that there is no way we can afford this! He also told me to cancel finding out about any thing else related to this! He told me I was wrong to even consider it. Seriously! He said it would be another bill and that we cannot take this on.
He stormed out into his garage room. I was numb. I really was in pain emotionally now. I thought why try anymore? You know, if I had cancer would he do the same thing about a med? Is he really so self centered and blind that he cannot see or comprehend how insensitive he was? The answer, sadly, is yes. I saw a new side of him yesterday. It is a powerful revelation.
I have been here to help him overcome HIS issues and done whatever was necessary to make sure he gets care he needs. You know, the Golden Rule. I saw yesterday that no matter how much I give he will only take. He truly does not seem to care about any of my issues at all. He went so far today to say he didn’t want to hear anything about my call to another doctor regarding a different issue. Guess I know where I stand.
A friend of his passed away yesterday afternoon. (This was after our conversation above had occurred). Now today, he told me his friend isn’t having s funeral. His wishes were to be cremated and his wife was to hold a sort of wake. My husband, the recovering alcoholic, told me he was going and would have a drink for his friend! Wow! It is almost like he was waiting for an opportunity to drink. He assured me he was going to stay sober but only have that one drink. Uh huh, right. He might delude himself but I have seen this behavior before. I tried to reason with him about slippery slopes and how he was all but dead himself a month ago. He refuses to listen. Well, I tried.
I came back here with assurances of sobriety and caring for my well being. Bait and switch. Jokes on me. Bad day. Sorry to bring anyone down but this is my reality right now. I will survive. I will have to go on chemotherapy if Benlysta is off the table. Oh well, I actually want to live so we will see how this plays out. I am just so sad to see and hear how my issues do not matter to him. Actions speak louder than words so if his words match his actions then I am alone on this painful island. Well crap.
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!!
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…
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! ====
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
- Allergic asthma
- Allergic rhinitis
- Alopecia areata
- 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
- 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
- Devic’s disease (neuromyelitis optica)
- Discoid lupus
- Dressler’s syndrome
- Eosinophilic fasciitis
- Erythema nodosum
- Experimental allergic encephalomyelitis
- Evans syndrome
- Fibrosing alveolitis
- Giant cell arteritis (temporal arteritis)
- Goodpasture’s syndrome
- Graves’ disease
- Guillain-Barre syndrome
- Hashimoto’s encephalitis
- Hashimoto’s thyroiditis
- Hemolytic anemia
- Henoch-Schonlein purpura
- Herpes gestationis
- 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
- Neuromyelitis optica (Devic’s)
- 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)
- Peripheral neuropathy
- Perivenous encephalomyelitis
- Pernicious anemia
- POEMS syndrome
- Polyarteritis nodosa
- Type I, II, & III autoimmune polyglandular syndromes
- Polymyalgia rheumatica
- Postmyocardial infarction syndrome
- Postpericardiotomy syndrome
- Progesterone dermatitis
- Primary biliary cirrhosis
- Primary sclerosing cholangitis
- 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
- Schmidt syndrome
- 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)
- Vesiculobullous dermatosis
- 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)
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
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.
- Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
- Discoid rash – a rash that appears as red, raised, disk-shaped patches
- Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
- Oral ulcers – sores appearing in the mouth
- Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
- 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)
- Kidney disorder – persistent protein or cellular casts in the urine
- Neurological disorder – seizures or psychosis
- 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)
- Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
- 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)
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.
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!
Hello everyone! I sincerely hope that you have all had a great week! Our weather here in Ohio has been beautiful! Sadly, I did not get to enjoy it.
I had to prep for a colonoscopy which meant that I was tied to the toilet for the weekend. Yay me! I am glad that I had it though. It was on Monday morning I had it. I knew something was different when I woke up and discovered it took a lot longer than normal. I was also hurting a little. I have had lots of these since 2001 so I know the drill.
Anyway, I found that they had removed three small 2 mm polyps and one big 3 cm polyp. That big one was the worry. They have all been sent for biopsy and I find the results on Monday. Ok, whew!! Made it!!
Then, on Monday evening I began to hurt in the region of the big polyp removal. I went to sleep eventually but woke with more pain. I kept pretending to myself ( something I am quite good at) that it would go away. Instead, it got worse until finally I called the doctor at 4:30 pm. He told me to go to the ER and have a ct scan. Easy enough, right? Wrong!
I got there at 5:30 pm (driving myself, don’t ask). After triage and IV port in, bloodwork was sent off and they finally got a room for me. I went back and got dressed in hospital garb and waited. I saw the doctor around 8 pm and he ordered morphine for pain and zofran for nausea. Now I was scrambling texting trying to find a ride for later when I left. Remember, I drove myself ( again, don’t ask).
Finally I got my ct scan. The doctor returned and said my lymph nodes were inflamed around the area the polyp was removed. Great! The good news was my colon wasn’t perforated!! Ok, lymph nodes, sounds like lupus is acting up to me but what do I know?
I was then told I was being admitted. What!? Oh just great! So, now I am texting saying I am not needing a ride after all. Around 1 am I am taken to a room and after another hour of admission process I am finally able to rest a little bit. I slept for an hour before the lab came for blood again. Next was the tech for vitals. The nurse was next with meds. So, no sleep.
I must have seen seven different doctors on Wednesday morning. Finally one came in and said I had “alongmedicalnameicantrecall” syndrome that a few people get after a colonoscopy. Figures. This was the first time I ever had anything like this!
I was told if I could eat lunch, I could go home. Yippee!!! Well, after lunch, another doctor came in and said I would stay one more night just to be safe. Oh no!!! After she consulted with the other doctor, it was decided it was up to me! I dressed quickly and asked for my paperwork. Ah! The sweet smell of success!! I was breaking out!! Then, oops!!!!
They asked how I was getting home. Thankfully I had not had pain meds that day so I told them I was driving myself. It almost was an issue but in the end, they walked me all the way to my car and I was out of there!!!
I stopped and got my meds on the way home them got home. Took my meds and sat in my recliner with the intent of watching a few shows that were on the dvr. The joke was on me! Once I sat back my kitty jumped into my lap and I woke up at 8 this morning! Now, that’s not so bad but I went into the bedroom and promptly fell back to sleep. I finally woke up at 3 pm! I guess I was sleepy!!!
So, I must apologize for being MIA but it wasn’t intended. To beat it all, the weather today is cold rain!! All those beautiful days and I was out. Crap. Oh well, at least I am home now!
Please dear friends I would like to ask for prayers that my biopsy comes back ok. I am a little worried. I am not going to obsess but it is there until they give the all clear.
Hopefully I will steer clear of hospitals for a long time now. Well, one can hope anyway! Hope you are all enjoying spring wherever you live! ~Jen
Well my friends, I think we might actually have lift off for spring! A few times it looked this way only tone buried under snow again. Thankfully, I think the true spring has taken hold so off we go! I love this time of year despite my body’s trials. This time of year brings a sense of renewal to body and soul. The thoughts of beautiful things, such as flowers and babies fills my mind.
I have been in pain, yes, but somehow the beautiful weather dulls it a bit. Psychological, yes, most likely, but it feels great to be alive in spring!
I am planning my garden and getting excited to be growing heirloom plants that are more nutritional than the GMO substitutes available at most stores. I am happy to start my flowers too. I am also planning an herbal garden so I can use fresh herbs in foods. Yes, I love spring!!
Our lupus walk is approaching as well. Still have no team members and I am the only donater so far but I refuse to let it worry me. I have made it to this side of winter and today, nothing will slow me down!! Things will improve, I am sure!
I have also been working on organizing the house. I need to get things in order so that I can relax and enjoy the warmth of spring and summer that is quickly approaching! Funny thing, I never enjoyed spring cleaning before but after this particularly hard winter I find myself enjoying it!!
So off I go to face my day! I hope each of you will slow down and appreciate all Gods Works during this season of warm renewal of life!! I will be!!
When you have an autoimmune disease like lupus and others, you need to be travel savvy when taking trips. How do I know this? Well, I like to travel and find that proper planning and rest can make the world of difference to a lupus body.
I have found that when planning a trip, first consider how you are traveling. If by car, then the rules are different than from airplane. So, in an attempt to help others, I thought I would share some of my “tips” for traveling with an autoimmune disease like lupus.
No matter your mode of travel, the first rule is always the same, get plenty of rest before you go anywhere. Take your time when planning your trip and be sure to include this rule.
Do not “wing it”. Properly planning your trip and itinerary can make the most ambitious trip more manageable. I start by listing what I plan to take with me, as in clothing and accessories, and from that branch out into what I want to do while on my trip and places and/or people I want to see. This helps because by breaking it down to smaller components, you do not get overwhelmed and overdo it. It is important to do this, otherwise, you could be setting yourself up to a disasterous trip and full on flare! Simply taking it in bite size pieces before you leave can make all the difference in the world.
Rest. Plan rest stops for you and your body so you can do all the things you really want to do. For example, when I travel by car, I always plan on taking a day off the next day to let my body rest. If I push myself, then I get into a world of hurt. It is vitally important that we rest often and take our time. If traveling by plane, you can rest on the plane, especially if it is a long flight.
No matter how you travel, make sure you stretch your legs at regular intervals, and as often as you need to. This will prevent not only blood clots from forming in your legs, but also allow for your muscles to not cramp and for proper blood flow and joint movement. When you sit too long in one position, your joints tend to stiffen up and become painful. When by car, I try to stop once every two hours, no longer than that, and get out and walk a bit. It truly does help. In a plane, you can walk up the aisle and back down as you go to the restroom or to the snack area. If you are on a long flight it is important to do this for the reasons mentioned above.
Keep your meds close to you. If traveling by car, keep them in the interior of the car if possible and if by plane, keep them in your carry on luggage. This insures that you will not get separated from your vital medications. I never put my meds in checked baggage, ever! I always try to keep a small bag in the interior of the car to so that if I need something, it is in easy reach and not buried under a mound of luggage in the trunk of the car.
I hope you have found this to be helpful. I have learned these things by trial and error. I love to travel. I love to see new things. These hints have helped me to maintain a semblance of less pain as I see and learn new things in my travels.
To start this post, I find it is important to describe what the definition of tremor is. Here is the definition from wikipedia:
A tremor is an involuntary, somewhat rhythmic, muscle contraction and relaxation involving to and fro movements (oscillations or twitching) of one or more body parts. It is the most common of all involuntary movements and can affect the hands, arms, eyes, face, head, vocal folds, trunk, and legs. Most tremors occur in the hands. In some people, tremor is a symptom of another neurological disorder. A very common kind of tremor is the chattering of teeth, usually induced by cold temperatures or by fear.
This would seem to be a complete definition but the things I experience do not necessarily fit into this tight definition. I do experience hands shaking, sometimes lip quivering, and muscle twitches at times. The shaking I get that drives me bonkers is where it feels like the whole inside of my body is shaking and it may or may not show in my hands or other body area. It is quite frustrating and scary. It makes me stop whatever I am doing and have to try to lay down and rest to relax my body. It does not seem to be anxiety related either. It cans trike me at random and is puzzling and frightening. So, as I usually do, I thought I would research this out too.
Amazingly, I found not one shred of medical information regarding this, other than others who have had this experience. I usually find things on medical boards or places like medline or webmd but not in this instance. It made me wonder if any of you have had this happen to you too.
I know I saw quite a few others asking this same question as well. I know I am not alone in this. It just may take some time until more is known in the realm of medical professionals for me to find anything online.
I saw my new gastroenterologist the other day. Since I have been having so many issues with my colon, I knew I needed to see someone so my new family doctor referred me to this new doctor. He was awesome! He had us schedule a colonoscopy for the first part of April, hopefully by then these issues will be resolved enough to do it.
I feel so much better after seeing this doctor and I am so glad to add him to my team of doctors! My appointment was for 2:30 pm, I got there at 2:25. I was checked in and filling out forms and then called back to the room. The nurse was thorough and very nice. The doctor was amazing! Afterwards, I paid, got my instructions, and left. It was now 3:00. WOW!!! I love how these doctors value my time as much as their own! I like this new trend in medicine.
So, one major thing down, a few more to go. I still have eto see my new gynecologist for checking out that mass on my ovary. I am seeing my neurologist Friday. I see my surgeon next Thursday and the the following Monday, my rheumatologist. My ducks are lining up quite nicely.
Thank you all for your continued good wishes and thoughts and prayers. Things are on the upswing now! I am being proactive and hope things turn out well. I have a lot more living to do, a new grandbaby coming, and plans to do much more!
Well I am sorry to report that my infection never went away. A part of it lingered on from my recent hospitalization despite all the antibiotics I have taken. The pain was pretty bad so off to the ER again.
After tests, iv’s and a ct scan they discovered that this infection had not left. However, it was not as bad as before so wonder of wonders they sent me home with five new prescriptions! Hooray!!! I packed a bag in case they admitted me but so happy I didn’t have to use it.
One more thing… I asked about my blood count and I am now 12.1! 12 is the lowest number for not being considered anemic. I am working on improving that by eating protein. That is good news indeed!!
So, I am home, in my recliner, my kitty is sprawled out across my lap, and all is right for me. Hopefully, after two more antibiotics, this thing will be gone once and for all. Here’s hoping!!!
Yup, it’s me again. I loved all your responses to the last post about sleeping! It truly does help knowing we are not alone in this battle we are in!
As I am writing this post, I have the overwhelming urge to go back to sleep! Again. Considering all the sleep I have had lately, it still surprises me that I am so fatigued. Yet, I made myself get out today and get a few things. By the time I got back home, I was totally wiped!
Now I am sitting here with my puddy tat in my lap, in the recliner, and will probably fall asleep once I sign off. At some point I truly would like a day with no fatigue or pain. Just one! Yeah, I know, pity party for one here. I just wish I could do the things I want or need to do!!! That being said, I am thankful to have another day of life and I really do appreciate it! Even on these bad days, I am thankful to know that at least I am here! There are others who would trade me the chance if they could.
I hope you are all well and happy today! I am up and down. I will survive this day (hopefully) and think about a better day tomorrow! Keep the comments coming! I love to read your comments. Please do not feel neglected if I do not respond to each of them. Some days it is hard enough just to post and if I missed replying to your comments, please know that I read each of them and when the energy is there, I respond. Just have had a bit of bad flaring so not all that “chatty” online. It really means a lot to me when you share because I know that I am not alone too! Thanks to you all for your comments, encouragement and personal stories! ~Jen
Today began as any other. I got up and drank some coffee, sat down and took my pills. Next thing I know, I hear someone knocking on my door. By the time I come around from the fog, they had left. It was my mom. So I called her and then sat down again. Once again, the next thing I know, someone is knocking on my door again. I had fallen back to sleep once again! I answered the door to find my husband there. I am not sure he ever said why he came down here but his car would not start so he couldn’t leave. Long story short, his car is still here but he left in the pouring rain to walk back to his home. By the time I was fully awake, he had left.
Now I ate something and then sat back down. Seriously, I fell asleep again. I also discovered my lymph nodes swollen so my thought is that I am flaring up in my flare again and sleep is what is happening. It happens when I begin to flare up worse than “normal”.
So now here I sit, at 4 in the morning, wide awake and watching my programs I dvr’d. Hope I can get some rest soon.
So, how was your day? I hope everyone is doing well. Thanks for letting me vent a bit.
I have a common refrain these days when I look around my little house. The question is “Will I ever get this done?”. When I moved in here, in June, I got unpacked, well, mostly unpacked and then set about to settling in to my new digs. In the interim, I have been able to get more of my stuff and now find myself surrounded by bins and boxes of various things that I need to sort out and make decisions about.
It is a sad commentary for me to admit that I am surrounded by these bins and boxes and even though I do get a few things done each day, I find it seems to keep growing instead of diminishing. Is it breeding while I sleep? I feel certain it is something far simpler. Basically it is because, I have had a few set backs health wise and have had little or no energy to do most anything at all. When I do have energy, I am in catch up mode, catching up on dishes and such. That means that the bigger things surrounding me are still waiting for scrutiny, of which I have not had energy to do. It is a classic catch 22.
I am hoping to get over this hump and soon because I need to get this place winterized before the weather gets too cold. In order to do that, I need to find a way to get around these bins and boxes. It really only matters to me but I hate it being so messy. I will leave that for another day though…
Fall and Spring are two of my favorite times of year. The weather is in the optimum range during the day with a nip of chill at night. In Fall, the leaves are changing into brilliant colors that capture images in my mind. In Spring, the new leaves and stirrings of life after winter give me hope. It is a cycle. I am fortunate enough to live in a place that has four seasons (most of the time).
While I love this time of year, it does not love me. You see, with lupus and fibro and on and on, the weather changes actually can create problems int he form of pain and swelling and such. Add to that the pressures of the barometer and well, you can see it is not especially a comfortable time for those of us with lupus.
So I have been under the weather, so to speak, for a bit now. I have had pneumonia and a particularly bad flare. I am still recovering from them. I find I will be wide awake one minute then sound asleep a second later only to wake up and find that I have slept for a few hours. In other words, my body has taken over. If you are a lupie, you may have experienced this phenomenon as well. It is called “toxic fatigue”.
To help you picture how it feels to one who has it, think about how you feel as you wake up. Most feel refreshed, and ready to face the day ahead of them. If you have toxic fatigue, you literally are aware of being semi-awake but find it terribly hard to pull out of the fog that has you surrounded and is calling you back to sleep. You literally fight to wake up and get started on your day. Sounds kinda scary doesn’t it? Yet, that is how I have been for a few weeks now. It is indeed scary. I mean, what if I cannot wake up? I live alone so only my cat would know it. Is that maudlin thinking? Yes it is, but oh so true as well.
Have any of you experienced this toxic fatigue? How would you describe it? Please share your experiences! Thanks for reading!
- Lupus fatigue and catching a cat… nap (lupusadventurebetweenthelines.wordpress.com)
This is a moan, venting about the last few days. If you want to read it, fine. If not, fine. I just needed to get it off my chest. Thanks!
If you have ever been on prednisone, you wil know what am I talking about here. When I am on prednisone, I find myself suffering insomnia and running around cleaning and doing things. That is what prednisone does to me. Usually that is.
For some reason I have slept the last two days away, despite the prednisone. I found out why today. It seems that I have developed this tightness in my chest and ear ache and congestion along with a cough. Well I it is par for the course it seems. So, now I am sleeping even through the prednisone and feel like I can hardly move and walk or anything. That heavy feeling in my arms and legs and feeling like a huge weight is on me.
Thanks for letting me moan. Just sick and tired of being sick and tired.
It is that time of the year again, the time when the weather cools at night and the air is filled with the scents of fall. It is a beautiful time of the year! I love this time of the year! Unfortunately, my body doesn’t like it. The cooler weather triggers flares in many lupus patients. I am one of those patients.
As most of you know by now, I am in a major flare. Fully. I have joint pain, fatigue, blisters in mouth and nose, malar rash, and feel like poo. I called my rheumy and he called me in the poison I hate. Prednisone. Yes, it can work miracles, especially for us lupies. I just hate how my body responds to it. For the first two days, I was still miserable. Days three and four led to a flurry of activity as the prednisone kicked in and the adrenaline kicked in too. Of course, with the increase in activity, it also brings setbacks in other ways.
My body reacts to prednisone in a variety of ways. I almost always get the malar rash breakout when I first start it. Next comes the MAJOR hot flashes! I mean MAJOR! No sleep is another one. I get back spasms too, dunno why for those. Now add in intense itching, extreme hunger and insomnia, and well, you get the picture. Sure, it helps me fight lupus! It gives me energy and shows me how I can feel good sometimes. The minuses are many though and I hate this medication!
Alright, I know, it is a miracle drug that keeps many of us lupies alive. I understand that. I just wish science could find some other medication that does not have so many side effects and yet can stop a flare in its tracks! Until then, we have to get the different poisons, aka medications, and pray for the best.
I am thankful for the meds because seriously, they do help stop the major effects of this disease. The drawbacks come in the form of osteoporosis and others. I know this personally.
So, I have been MIA for a bit because I am either tearing into a project with this energy from the prednisone, or I am sleeping for 24 hours catching up. Such is life in the life of a lupus patient.
I am writing this post while I have so many things on my plate. I need to get the house in order for the upcoming winter, and from what I have heard, this house is horrible for drafts and cold. A previous occupant told me she would get up in the morning and open the oven, turn it on, then lay back down until it heated it up enough for her to get dressed for work. Yikes! Now, that being said, I do not truly know what it will be like but hey, gotta place to live so I cannot complain. I will get a couple of those little heaters to help out. I am also thinking of getting hay bales to put around the exterior ground level of the house to help with insulation. You see, the house is kind of rotting around the ground level from mold and rot due to not having the proper spouting leading the water away from the foundation. Yes, as you can tell, this is an old house. Ah well, I will deal with it all in my time frame.
Now, another thing on my plate is getting my finances in order. I have worked out a budget that, while tight, is going to get me what I need. No wants but needs. I can deal with it. The peace is wonderful and worth it. Just going to be living simply for the next bit but in the end I will be debt free and able to live better on my own.
On the negative side of things, my lymph nodes are swollen in my neck and I have blisters in my mouth along with severe pain in the joints. This is otherwise known as a major flare beginning. My rheumy is calling me in steroids to help combat this before it goes any further. I hope it helps. Daggone it though, I just lost all that weight and now will most likely gain some of it back. Well, I guess that is better than the pains of lupus.
I have been getting to see my kinds and grandkids so much more lately and that is a blessing. I admit that it has been so wonderful seeing them more often and getting to be a major part in their lives.
I am still dealing with my grief on losing my doggie Savannah. She is missed so much and yet knowing she is not in pain anymore makes the blow a little easier to accept. It will get easier over time but right now it still is a bit raw.
I will be posting my big shopping adventure tomorrow and show you all my freebies I got!!! Retail therapy does help me out…lol…
Hope you all are pain free and happy and enjoying the change of seasons in your area!
I posted this a year or so ago but feel it is worthy of repeating… thanks for indulging me! Enjoy! ~Jen
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!
I decided to make this post so you all could share your stories of your journey with these autoimmune diseases. I honestly think that by sharing, it helps us in the day to day, knowing there are others that are dealing with the same issues. So, please share your story by commenting on this post. I think it will help our community bonding and each of us personally. Thanks! ~Jen
Part 9 of this series, thank you for indulging me int his. From the Mayo Clinic website
Lifestyle and Home Remedies
Lifestyle and home remedies
The following suggestions can help you manage peripheral neuropathy:
- Take care of your feet, especially if you have diabetes. Check your feet daily for signs of blisters, cuts or calluses. Tight shoes and socks can worsen pain and tingling and may lead to sores that won’t heal. Wear soft, loose cotton socks and padded shoes. You can use a semicircular hoop, which is available in medical supply stores, to keep bedcovers off hot or sensitive feet.
- Exercise. Ask your doctor about an exercise routine that’s right for you. Regular exercise may reduce neuropathy pain and can help control blood sugar levels.
- Quit smoking. Cigarette smoking can affect circulation, increasing the risk of foot problems and possibly amputation.
- Eat healthy meals. If you’re at high risk of neuropathy or have a chronic medical condition, healthy eating is especially important to ensure that you get essential vitamins and minerals. Emphasize low-fat meats and dairy products and include lots of fruits, vegetables and whole grains in your diet. Drink alcohol in moderation, if at all.
- Massage your hands and feet, or have someone massage them for you. Massage helps improve circulation, stimulates nerves and may temporarily relieve pain.
- Avoid prolonged pressure. Don’t keep your knees crossed or lean on your elbows for long periods of time. Doing so may cause new nerve damage.