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!
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.
- 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)
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!
Lupus and Lymph Nodes
Ok, I confess that right now my lymph nodes are rather swollen so this information was gathered for my own personal use. I figured that if I found it interesting, then maybe others would as well. So, from the mayo clinic web page, here is the information I found.
Definition
CLICK TO ENLARGE Normal and swollen lymph nodes…Indulging Myself
As I was sitting here watching my Doctor Who episodes on dvr, I felt the need to have a doughnut. Yes, I said doughnut. So, I went out to the car and went over to Tim Horton’s, and got two doughnuts and an iced cappy to go with them. Indulgence? Yes. Good? Yes Happy? You betcha! Now, I do not do this often so this is indeed a treat to myself.. I think after the week I have had, this was nice.
Hospital Again
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
Spring May Have Finally Sprung?
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!!
Babies, Trips and ER visits
It has certainly been a busy few weeks around here. My niece is having her first baby in a month. In the last three weeks, she has been given two baby showers. Both were in Kentucky. Both involved a road trip to attend. With lupus, trips need to be planned. I did that. I enjoyed family time and fun and food.
A good friend of mine became a grandmother in the last few weeks too. There is nothing like that first grandbaby! Her grandson is so precious! I got my baby fix holding him after he came home, He is such a handsome young baby. I tell you, babies are all around me right now.
The trips and babies covered, now on to the ER visits. While I have been away, my daughter has had to go to the ER because of right side pain. After tests, it has been discovered that she has a kidney stone 11 mm in size! She will be seeing a doctor tomorrow to hopefully get that thing broken up and out! She called me and had forgotten that I was in Kentucky. After some calls, we got her help. Mom to the rescue even from kentucky!
My husband, in the meantime, had another seizure while I was gone too. He woke up on the floor beside the bed. Scary!
Now, I am heading home tomorrow. Everyone can settle back down since I will be close again. Such is the life of me. Crazy. Mi vida loca!!!
Crazy Me
I have been a little out of sorts lately. I have had to undergo a whole slew of tests and still have more coming. It seems I am falling apart. Not really, but it feels like it at times.
I will detail later what is going on. Suffice to say, I may need surgery in the very near future. Yuck!
In the meantime i am concentrating on good things. For example, this weekend I am going to Kentucky for my niece Megan’s baby shower. I am not driving so hopefully it will not be too bad on this old body.
The weather is crazy right now here in Ohio. I know that Ohio is unpredictable, especially when it comes to the weather but getting several inches of snow one day, causing car pile ups, school delays and such, and then it all melts the next day! Hm, wonder why I am in so much pain lately? I have no clue.<insert sarcasm here>.
This is a time of remembrance as well. Reflecting on the love God has for me by allowing his own son to die for my sins is a pretty big deal. This time of year reminds me that I am not worthy to be a Christian, yet God has provided a ransom sacrifice, in the form of His son, Jesus, so that I can be one. I am grateful for that gift.
I also found out that unbeknownst to me, I am a great grandmother! My granddaughter, Leng, had a baby girl seven months ago! Leng is my step granddaughter but I claim her as my own. Her beautiful daughters name is Jean. I understand why I was not told but no matter, I am a great grandmother!!! Happy happy joy!! Another little girl to spoil!!!
Thanks you all for letting me vent a bit. It is the way I can get stuff off my chest. You all rock!!!! Than you so much! Hope each of you have very happy days today and in the future!
Traveling
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.
FIRST RULE
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.
SECOND 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.
THIRD RULE
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.
FOURTH RULE
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.
FIFTH RULE
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.
Tremors In Lupus Patients
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,[1] 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.
Two Faced People - A Lot Are Around These Days
It seems to me that two-faced people have been surfacing around a lot lately. I do not get how people can be so great with you to your face and be nice and forthright, but behind your back, they say some of the most nastiest and terrible things about you and then you find out about it later. It is not a pleasant thing to hear.
Road Trip
Well, my neice is having her first baby and she lives in Louisville. We drove down to my sister in laws house to stay until the shower. She lives outside of Lexington. I am really looking forward to the shower and seeing my neice pregnant in person. I have only seen pictures to this point so I really want to see her.
The trip started out pretty well. The drive was not bad, we missed rush hour in Cincinnati which is always a good thing. We got down here and this is where it gets interesting. Road trips lately seem to aggravate my sciatica and so sure enough, it acted up. This made me unsteady (or more unsteady than usual). I laid down to rest it and needed to get back up. I called for my husband to help me and he said he was eating. I decided to get up on my own. I rolled off the bed and promptly fell onto my left side. I yelled for help and finally got up and dusted myself off and thought it was a one off. I was wrong.
When I went to bed, I fell asleep and woke to acid reflux. What fun!! I took meds and had to sit up until they went into effect. The short version is that I was up most of the night last night. I finally get back into bed around 6:30 am.
At 10:00 I was awakened by my husband asking me to get up and cook his breakfast of bacon, eggs and toast. I got up and did that and basically discovered that I hurt pretty bad from my fall. I tried to get a nap later this afternoon, but it just was not gong to happen. I am really hurting on my left arm and shoulder plus my rib cage and left knee. Hey, I do not do things halfway. Crazy.
Don’t get me wrong, I am having a great time visiting with family. I am just doing it in more than the usual amount of pain. Oh, and my blood pressure is high. My feet are swelling and did I mention pain on my left side?
So my first day and night have been eventful to say the least. Here’s hoping tomorrow will be better.
My New Blog
I am really excited to tell you all that I have a new blog! It is called “Life and Living”. It was created by me because I got to thinking about all the off topic things I post on here and now they will have a place!
I have only two posts on it so far, both reposts of items on this blog, but I would like to invite any who would like to subscribe to go to this address:
http://www.lifeandlivingjenlynn.wordpress.com
Let me know your thoughts and what kind of topics you would like to see covered. I am excited! This will free me up on this blog to cover the many autoimmune topics that I began this blog for and the off topic items can go on the new blog!
I am still trying to get it set up properly, so please bear with me as I iron out the kinks. You will see I am leaving the off topic posts on this blog, but I will be adding the new ones onto the new blog.
Thanks for your continued support and your readership and sharing all the things we go through when we have lupus! That will not change here at all. ~Jen
Gastroenterology
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!
Anniversary of Devastation
This is the one year anniversary of a devastating tornado that virtually destroyed my family’s hometown of West Liberty, Kentucky. I was not born there, but visited it most of my childhood with my grandparents on weekends when they took me “down home”. It is the “home” of my heart. Some family still live there. When I think of home, I think of this town.
Here are my thoughts on the anniversary of this terrible tragedy:
I still haven’t been to West Liberty since the tornado hit one year ago. I tear up just thinking about everything being changed. I have so many happy memories of it from my childhood and adulthood and in my mind it will stay the same. However, the reality will hurt once I see all the changes. So many affected. So much loss.
I know though, that this town is made of things much stronger than bricks and wood. Its heart is strong and its people stronger. The changes will hurt, yes, but the spirit of the town, it’s people, will remain strong and vital. That’s just how West Liberty is. It’s what I love most about this town that I call “home”.
It’s people will rebuild with that pioneer spirit that it was originally built with. It will be new, but it won’t. The people have not changed, just the buildings. I am proud to call West Liberty my “down home” !!!
Here I Go Again
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!!!
